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Unusual symptoms
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Unusual symptoms

I have had unusual symptoms going on for almost two years now. First I had pins and needles sensations widespread over my body and occasional muscle twitching and after a few weeks it went away. A few months later the sensations and muscle twitching came back with some other symptoms such as ears ringing, lower back pain, hamstring muscle cramps, some bladder incontinence, and a general shaky feeling. I visited a neurologist because of a concern that it might be MS or something else and had an MRI and general exam. The Dr. said the MRI came back clear and my exam was normal. She felt MS was not a possibility because my symptoms were widespread and it doesn't usually appear like that. True? I was recently diagnosed hypothyroid and she felt that it was probably all related to my thyroid disorder. I have been on medication for a few months and still have these symptoms off and on. Do you have any advice? Thanks for your time.
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Avatar_n_tn
Sorry to hear about your symptoms. Glad that the MRI and exam were ok. Your doc is partially right. When there's widespread numbness and tingling along with other scattered symptoms, it's difficult to localize the lesion to specific spots in the brain that may be damaged by MS. However, there is a small amount of patients who DO have nonspecific, vague neurologic symptoms that don't localize anywhere and the MRI shows classic MS spots throughout the brain and spinal cord. In your case, though, the MRI (should have brain AND spine) was clean which makes the diagnosis of MS much less likely. If you didn't have the spine imaged, you should talk to your doc as MS can show up there too.
Hypothyroidism can certainly be a cause of your symptoms. Once treated adequately, your symptoms may improve. Another test that may be helpful is an EMG to see if this a problem of your peripheral nerves. Laboratory workup such as ANA, sed rate, blood count and electrolye profile can also help rule out other potential problems such as lupus and other rheumatological disorders. Finally, you can always seek a second opinion. Good luck
54 Comments
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Avatar_n_tn
Hi,

I have been having similar symptoms for the past 30 - 40 days:
tingling in my legs and feet
wake up numbness in my hands
lower left eyelid twitch

I went to the doctor on April 18th and she did a full blood test to rule out "common" things that cause numbness (diabetes, thyroid, vitamin deficiency, anemia, etc.)  My tests all came back normal.  

I am making myself a nerve end obsessing about the possibility of MS.  I spoke with my Dr. about this and she does not seem overly concerned.  I want to go see a neuro but she doesn't think it is necessary.  I wish I didn't have an HMO, I'd make an appt. myself.  I go back to my primary on May 16th and I'll try to push her again.  

I've also been trying everyday to post a message on this board but it tells me that it is full.  I can't believe I finally found someone with similar symptoms.  Please keep me posted on your progress.

Good luck to us all
God Bless,
Lisa
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Avatar_n_tn
I understand what you are going through. I have had very similiar symptoms that you describe.  About 2 months ago, I had numbness/tingling almost all over (hands, arms, feet, lower legs, back, neck, face, head).  I was convinced I had MS.  I went to the doctor had some routine blood tests.  I also had a brain MRI which came back clear.  I then developed some small jerks and twitches (fasciculations).  I went to a MS specialist at the Mellen Center who said I had benign fasciculations and had nothing to worry about.  He would not order any more tests.In my blood tests, I had some elevated T4 (which may be hyperthyroid).  I have read that hypothyroid can cause the numbness/tingling though.  From what I understand, it is more uncommon to have widespread symptoms with MS (particularly when it first presents itself).  I was feeling better about it, but now I think I have a bladder infection or something as I am having increased frequency of urinating.  So now I am freaking out again as this can be a symptom of MS.  I would try for more tests if possible at least to ease your mind - like some MRI's or something.  Make sure they are closed if you can handle it. But it sounds like it is probably your thyroid or something benign.  Has others had similiar symptoms - numbness/tingling, twitches, bladder infections?  I am very scared.
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Avatar_n_tn
i too have had all of the above symptoms.  I went to my family doc- had routine bloodwork- all normal.  he suggested a neurologist.  Then had a ton more bloodwork and an emg.  Blood was normal but emg showed an unknown neuropathy.  Then had a mri of spine and brain- all normal.  Then a spinal tap- normal again.  Doc suggested either Mayo clinic or a chicago university.  I went to a hospital in chicago and repeated blood and emg.  They told me I was fine and showed no signs of neuropathy and that if the docs office was cold it could have thrown off the test(im glad i spent 2000.00 on a test for no reason).  After all is said and done I'm  twitching all over all the time i cant exercise my legs cramp my toes cramp my stomach knots up and i am the most ******* healthiest person in the world.  The docs says im fine and that its beningn faciculation syndrome(please, thats like saying your arm hurts and then telling you you have arm hurting syndrome).  If they dont know then admit it dont assign some stupid *** term that means nothing.  My neuro told me to see a colleage of his for  further testing.  **** that.  These docs dont listen to you, they finish your sentences, they look at you like your some ******* hypochondriac, they rush you out to get to the next patient so they can get to the golf course.  I am at the point that if i am sick or  dying then so be it.  I cannot afford any more useless tests and worthless medication or time off of work.  I  hope you all have more luck than i did.  If you go back into all of these logs not a single person has ever had a correct diagnosis from any of their docs-ever.  Stop wasting your money and get on with your lives.  michael  ***@****
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Avatar_n_tn
Hi,

I am 36 years old and have had symptoms for at least a year now.  I started with head pressure above my eyes, behind my ears and at the crown of my head.  It progressed to singling in my arms and legs as well as painfull muscle twitching, ringing and pressure through my ears.  Leg and hand stiffness.

I, too, have had the brain MRI for MS, an EMG (twice), full body nuclear bone scan, an array of blood work, and evoke potential test, sinus xray, neck xray.... so on, so on, so on.

Everything negative (good, I guess, except that I am still in pain).

If any of the others on this site figure out what they have, please let me know.  I, too, am getting the "what now" from my doctors.

Good luck to all.  (I am happy that everything is negative so far, but like you, I am wondering what the heck is going on.)



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Avatar_n_tn
I think I'm beginning to agree with Michael. Either we're healthy or we have some disease, we won't know what it is until it's totally obvious to the medical community. My new sense of normal is different than before and I'm having to adjust to that fact. It's just been very frustrating in the meantime to accept that reality. You can't put your life on hold waiting for someone to tell you something specific that you have.I'm seeing more posts to this board with these type of symptoms and I've never seen anyone write back with a final diagnosis of a disease.
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Avatar_n_tn
I have just started having these symptoms (almost 2 months) and I am starting to wonder if I will find out what is wrong with me or if it will just go away or if I will have to just learn to live with it.  

It started with just tingling and numbness in one hand and arm accompanied by pain and burning - and has progressed everywhere - including my face.  I have some bladder problems and some muscle twitching and spasms.  I am also extremely tired - all the time. I have had blood tests for thyroid, diabetes, lupis - and a c-spine MRI - all negative.  No one seems concerned because my motor ability "does not seem impaired."  

It is frustrating to know that something is wrong with your body - and to have doctors tell you that nothing is there.
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Avatar_n_tn
Isn't it funny that if they can't find any objective symptoms then there must not be a problem.  My gross motor abilites are also intact by my sensory is just haywire.  The pain I have in the back of my head/neck somedays is just unbearable. The pins and needles in my hands and feet tend to come and go.  Ringing in the ears, and sound sensitivity that literally startles me. Stomach problems like spasms in the throat and feeling like rocks sitting in my stomach. The fatigue OH the fatigue!! My muscles just ache which feels like I just completed a strengeous work out but actually I am barely able to get out of bed and the next day my muscles won't hurt at all.  I have had many tests all negative like the rest of you so it must "all be in my head". I actually was told by a doctor that I was "hormonal". I have been tested for lyme, lupus,and thyroid. No tumor or spinal problems.  I am waiting for another neurology appointment to look into MS or perhaps a neurotoxin of some sort. I know there is something wrong with me.  I have always been healthy and all these problems came right out of the blue. I am determined to find a answer no matter how long it takes.  I wish everyone the best and hope you find answers soon!!
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Avatar_n_tn
Hi  (esp Terry-Sue)

I too have similar symptoms and went through the same frustration with doctors just scratching their heads and throwing anti-depressants at me. I eventualy went for a second opinion to a neurosurgeon and went through the same tests (blood, mri, eeg etc) which were pretty much normal but he also did a lumbar puncture (spinal tap) and found my pressure to be too high (Intercranial Hypertension). This can cause all sorts of neuro problems and is frequently missed by non-specialists. From my experience a spinal tap should be a mandatory step for any neurological condition that does not have a clear cut diagnosis.

It is very tempting to assume MS with these symptoms (as I did and got very scared) but similar problems are reported by folks with confirmed conditions like Meniere's Disease, Pseudotumor Cerebri/Benign Intercranial Hypertension (PTC/BIH) or Arnold Chiari Malformation (ACM). It is certainly worth mentioning these to your doc to at least get them eliminated.

Since becoming ill I have done a lot of research on the internet to try to understand why I feel so bad. It makes you realise you may not be a hypochondriac after all!

Roger
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Avatar_n_tn
Hi,

I have been dealing with dizziness/numbness&tingling in the head, neck, hands and feet/ringing in both ears/frequent urination/gross fatigue/memory problems/muscle weakness for over three years.

During the past couple of months I wake from a sleep and the tingling and numbness is really bad.  It's wierd because my head has these waves or short circuit feelings.  I have had lots of test, tried chiro, accupuncture, massagage therapy, tens therapy etc:  I did have tests showing elevated mecury levels so I recently had my 7 mercury fillings removed at a cost of 7K.
And recently started a Detox product called NDF.  I HAD NO IDEA SILVER FILLINGS ARE 50% MERCURY!!!!!!!!!!

Last year I spent 11k out of pocket on tests and trying different treatments.

My 5 year old daughter and wife have seen me constantly sick for over three years now and I promised to take them to Disney for a few days.  My daughter is so excited but, I am sick.  Maybe we will just try to go and put it into the hands of the Lord.

Last year was a bad year for my daughter as she broke her arm and while vacationing with her mom in Brazil had an accident and received 2nd degree burns down her arm and leg.

It seems like a lot of people in all age groups have these peculiar symptoms.  Most Doctors I go to say I am to young for these symptoms, they normally happen when your much older and the body ageing (aging).

If anyone would like to email me my email is:

***@****
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Avatar_n_tn
I have also been having similar problems. My sympthoms havebeen a little different thought. I have had shakyness, nervousness, chest pain, abnormal pressure feelings in my eyes, tingling in  my back and fatigue. I am wondering what could be causing this. I am currently going to an endocrinologist and have recently (within 3 yrs) been diagnosed with hypogonadatrophic hypogonadism. I am currently taking growth hormone injections and testosterone gel for this. If there is any suggestions on what the cause might be, just post me a message right on the same page that i did and i will check up on this periodiocally.
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Avatar_n_tn
Although it doesn't resolve the problem, it is really helpful just to hear from others with the same problems.  

Thanks,
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Avatar_n_tn
Has anyone read about fibromyalgia?  I may have it spelled wrong, but I read a book about it, and it sounds alot like the symptoms we all have in common.  I have had most of the same symptoms, but I also had the vision in my right eye go blurry, which prompted my doctor to do further tests.  But since he can't figure out what's wrong with me, I think he has given up. Its so frustrating to explain this over and over, and have the doc tell you that you're fine.  I'm not fine, I feel like hell.  I know of a doctor in Fargo, ND, who is an OB/GYN, but has gone through all this for a friend of mine, and came up with the diagnosis of fibromyagia, and she had many of the same symptoms too.  I'm trying to get in to see her, even though my insurance won't cover it.  Good luck to you all!
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Avatar_n_tn
I too have been through unusual symptoms for, get this, seven and 1/2 years now.  It has been hell.  For about one year I have tried every day to post on this site and have had no such fortune.  I keep trying though.  I do know this from experience though, do not keep skipping from doc to doc!  You lose alot of your reliability in thier eyes when you do that.  it is ok to get a second  opinion but try to stick with one or no more than two and get all of your records!!!  Keep a symptom diary and give an updated version of it to every doc that you see.  I have muscle twitching, pain, spasm, swollen node, burning, pins and needles, weakness and sometimes outright paralysis.  I have also had EVERY TEST known to mankind and many of them two or three times.  I have no answer.  If the doc on this site reads this...please find time to listen to my story, please.  For the rest of you, just try to get through every day and just live.  Kiss the people you love and love being alive even if you do not especially love the physical body you have.
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Avatar_n_tn
I have similar symptoms for 9 months now :(
At first i had a tingling right foot and after that it progressed to my hands (the extremeties in general). Rapid temp changes can cause unplesant paraisthisias too. All tests seem normal (brain MRI and spine CT scans), and the neuro physical test (reflexes etc). I am pretty sure my prob is on the spine though as when i strech/bent the symptoms get worse. The last few months my right foot feels tired and stiff, some docs say that its stress while others try to blame it on an old marijuana smoking habit that i had (i ve totally quit for 3 years now). The thing is that as some1 else pointed out, i have to adjust to a completely different reality and its difficult. The symptoms are not very intense but they do get worse as time goes by and the only thing i can do is to pretend they are not there :(
All this has changed my personality quite a bit, i have really learned to deal with my problems and i always try harder.
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Avatar_n_tn
I've had similar symptoms on & off for past several years. Was diagnosed with Pernicious Anemia 3 yrs ago & started B12 injections for life.  An endinocrinologist diagnosed the PA.  Most bothersome symptoms are pins & needles sensation in both feet, ice cold feet, muscle cramps/spasms/twitching, & nerve pain in both arms.  Past few months I had every test imaginable & all were normal. Present neurologist relates symptoms to Pernicious Anemia. I just have to learn to accept it. You can treat the symptoms but you can't reverse permanent neurological damage.
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Avatar_n_tn
Hi -

I have been reading this forum, as I have had some very troubling symptoms for some time.

- About 6 months ago, I started having some tingling/numbness in my feet, and spasms/twitching in my calves. It never went away, but I just ignored it. It sometimes goes away, but always comes back.

- About 7 weeks ago, I woke up with my hands numb and tingling, which after a couple of weeks turned into burning and/or cold sensations in my fingers and up my arms and elbows.

I went to a neuro at Columbia-Presbyterian here in New York, and had some blood work and an EMG done. He was looking for peripheral neuropathy. Everything was normal, except for a pinched nerve in the sacral area, which the neuro said should not be giving me any of these symptoms. I had a Brain and C-Spine MRI - the neuro said it was normal. There were some small white dots on the brain MRI, but he said he has seen these before and they are normal.

- The past 2 weeks, I will feel the twitching and spasms in calves and feet, and I noticed that my toes will jerk and move. Now it it happening in my hands and fingers! Has anyone experienced this, WHERE THEIR TOES AND FINGERS JERK AND SPASM, ALMOST LIKE A TIC? I am so scared.

The tingling and numbness is moving around now too - the right side of my face, my ear, my lips, and I get cold, tingling feelings shooting around my body, esp. the extremities.

I am so scared and have been crying for weeks now every day. I am getting married in four months, and feel like I have nothing to look forward to. I am so scared that this is MS or some other horrible neuromuscular disease.

I am going to another neuro at Cornell Hospital, and am going  to request another EMG, Brand and SPINE MRI, spinal tap, and ask what other types of bloodwork can be performed.

Does anyone have any advice or similar experiences? Should I be asking for the doctors for anything else? I am so scared - please help. Thank you so much. Vicki
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Avatar_n_tn

Hi, I'm 27 years old and last year in October 2001 I started having a stomach pain/disturbance that ended up in acid reflux (U know the gnawing pain in your throath that feels as if a semi-tire spinning slowly) . I took Prevacid and it got fixed. 2 months later my symptoms:

1. Pain in the abdomen area (left and right) and a feeling of nausea. I feel as if I've been poisioned 1.5 months of constant sickness. Went to doctors (same routine depressed,  it's in your head etc.) I also started to have hypertension and panic and depressive attacks.
Not because I was unhappy but due to the sickness.
I also had a 38 hours insomnia that accompanied all of this. I knew then that I'm about to step into something very unormal with my body. I work out and I'm in good shape so this is not an issue.

2. Not much later my nausea started to expand and I started to have some unexplained pains inside my head just as electrical pulses and sickening pressure at the base of my skull that felt as if I'm about to faint. The headache seems to be worsened after meals. I also had upper/lower jaw pain that was running through my teeth (randomly) as if I had taken severe bites out of ICE/LEMON. This is very weird since I was never sick in my life. I've been on blood pressure medication and serotonium resoration (paxil) I still believe that all this malfunctions are comming from the  middle of my body (abdomen area) I don't know if I have IBS or what in the world I have. It seems that if I allow air into my stomach and expunge it out I get a little relief (that one needs practice :-)) I've been in this condition for about 8 months already and still don't know what's going on. #2 also looks loose and not like it used to be before. I'm also affraid to drink water (paranoia of lead poisoning etc) Diet coke seems ok.

3. February 2002, I started to have muscle spasms and involuntary twiches (small scale). When the nausea was severe; which it was for me for about 1.5 month, all I did is sit around and do absolutely nothing. I looked ok from the outside but something very weird was going on inside.  I'm in good shape and nothing is visible from the outside. I did notice when I had severe pains inside my brain that my pupils were contracting and expanding visibly like my heart beat. Very odd.

4. Latest news, March 2002 now I have something new. Pain in my head is 80% less and the new adition is I get dizzy as if someone unplugs me for just a second. I get a sensation of motion sickness that lasts for just a fraction of a second and comes at random times.
My teeth only hurt when I go to sleep (upper rabbit teeth) they feel as if someone is applying current to them and mostly when I lay on my back. What in the world is wrong with me.

5. I started trying pot as some friend suggested. Yes it does help the nausea (more like it blocks it) but I get the "current" like pain inside my skull and the jaw/teeth pain instantly after smoking. This seems to be triggered by the weed. It does help me go through the night but with these side effects.
I don't want to smoke weed, I'm not a drinker nor a smoker. Nausea seems to come and go and sometimes i feel sharp stabs around the liver area and sometimes in the opposed side in the pancreas area. Most of the time when I'm nausiated it comes from those two places.
I did notice that if I interact and do things the pain goes in the background but I think that's about it. I just forget about it. I'm already sick entire of this weird illness. If anyone has any idea what's going on plz e-mail me.

QUICK DESCRIPTION OF MY SYMPTOMS.

A. Pain in the spleen area.
B. Pain in the pancreas area.
C. Pain in the middle upper abdomen.
D. Pain in the liver area.
E. Heat flashes.
F. Weird discomfort.
G. Bowels don't look normal, very loose and lots of      mucus. Long time since hard healty feces. only 10% of time they look ok.
H. Trembling (I solder electronics every once in a while)
and just found out that I can no longer hold the soldering iron steady (I'm 27)
I. Vision blurring... not all the time.
J. Stabbing pain in the eyes.
K. Mild background pain at the base inside the skull daily.
L. Stomach acid. (does not come up my esophagus)
M. Motion sickness without being on anything.
N. Sex drive down to 0.
O. Even when I'm ok I still feel the nausea in the background just waiting to get me.
P. That lead heavy pressure in the back of my skull radiating through my gums and snapping & popping.

The only thing I can confess is that I do go to sleep very late at nights (computer geek) and being doing it for about 8 years. Still I've never had anything like this.
The worst is that doctors don't know what this is.

Speculation... IT's being  happening to many people lately starting in year 1999' and up.

Anyone that experiences these symptoms please feel free to e-mail me to discuss them further or possibly to develop a pattern of everyone that has this, we might find out what's triggering these. Dust, detergents, animals, water, athmosphere changes, going outside, smoking marijuana, we need to know.
Unless the government is restoring the country with our medicine money.



****************UPDATE 05/01/02*****************

Latest Update, my nausea/ibs symptoms subsided I now experience the back/base of the skull pain/pressure and random pulling on my teeth upper and lower. I still have pains left & right of my upper abdomen. I also experince extreme teeth sensitivity only in my upper "rabbit" teeth but only when laying on my back.
I can wake up with no pain then after any meal or a glass of water I instantly feel the pulling/lead sensation in the back/base of my skull. Also when this occurs I feel sounds as if wafers (popping & snapping sounds) slowly squashed in the back of my head at the base. When this inflating feeling occurs it stops just seconds from being intolerable I also feel as if air is being released through my nose. Activity seems to make these symptoms less painfull and sometimes if I get caught up in a discussion I even forget about them.
It's still verry annoying since I had no health problems prior to October 2001.
I still don't know what's wrong nor my doc.

HELP!!  


l8r and good luck to everyone and I'll pray for all of us this condition is not something to be unserious about.
I'd rather have stiches that this ****.

***@****



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Avatar_n_tn
I have read everyone symptoms.  I feel better that I am not alone however I feel bad for all of you.  I know we can't all be crazy.  The past several years have been health hell for me.  I been where all of you have been and I 'm wondering where we are all going to end up.  I will pray for all of you till God touches you with His healing hand.  That includes me.  My scariest symptoms showed up lately.  I can't open things.  My hands & feet swell to double their normal size.  Muscle twitches and muscle contractions.  I can't close my hand, tear paper, lift, or snap my fingers.  It's scary.  So far all test show up negative.  Can't have an MRI.  Got metal in me!  Spinal tap is next!  Any ideas out there?  Test suggestions?
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Avatar_f_tn
Dear colorgirl~
What kind of metal and where? Did some one specific say you can not have an MRI?
I have a plate of titanium on my skull an have brain MRI without any problems. I would discuss that more with the radiologist to make sure you can not have one done.
Good luck! Amo
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Avatar_n_tn
I have been experiencing symptoms like these for 1 year now.  It started with back pain and heart palpitations.  It has turned into: tingling, numbness, headaches, stabbing pains in head, eye pain, muscle weakness, tons of air in abdominal area, twitching (muscles and vascular it seems), heartburn, nausea, sharp pains in sides, chest pain, and on, and on.  I have been tested for most major problems (cardiac, pulmonary, endocrine, and neurological) all have come back negative.  The only link I can see to all of this is a stressful event.  I find that 'normal' is a bittersweet memory these days.  Not giving up yet.
Email me if you want to discuss
***@****
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Avatar_n_tn
I read where Tim Clark said "During the past couple of months I wake from a sleep and the tingling and numbness is really bad." This was the first mail I read that referred to this and it is absolutely terrible to wake from sleep (if you are lucky enough to fall asleep) with this tingling and numbness. I also have been waking gasping for breath. Can't sleep more than 2 hours at a time. I have all the other symthomes  mentioned, i.e numbness and tingleing in feet arms hands, fingers and I am finding it harder and harder to cope.  Every day every day every day.  I also have tightness around feet, ankles and neck witch gets worse when I lay down.  This numbness is even on my lips and tounge.  I hardly ever have a good day or night anymore.  I am so tired.  Am going to nuero and am having mri on this week. However nuero said he never heard of numbness traveling all over the body the way mine does. In MS episodes are more targeted and he said even if the MRI comes back pointing to MS he will not say that is what I have.  Am keeping a daily journal.  Does anyone else have this "numb/tingle feeling that gets you awake?"
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Avatar_n_tn
I have had all the symptoms noted in the posts above. I HAVE been diagnosed with MS. I was diagnosed about 2 1/2 years ago.
I went on with these symptoms (all the ones all of you described) for probably 2 or 3 years (being called a hypocondriac (spelling?). Finally was diagnosed when I had a blind spot in my eye. That is when they did the MRI and found the plaques on my brain. Sorry may not use all the right terminology.
I am currently having a lot of problems with the tingling in hands and feet and numbness. My Neuro sent me to a plastic surgeon to take care of the carpal tunnel he says I have. (and boy do I) but now my plastic surgeon says I need to consult with a vasticular surgeon.. that I am having problems with circulation also.
When I do anything with my arms up high.. they go numb.
I have anxiety attacks (well my dr calls them that) and I take Paxil for that.. it causes extreme headaches and I am trying to get on something different.
I have taken Nuerotin for the pain in my joints and muscles but it made me convulse. The original drug they gave me for my MS (Avonex) caused me to sieze. I am now on Copaxone. Daily injection.
Things change every single day.. new symptoms new feelings.
I know that it sucks to have something and you dont know what it is... and it is a relief when you find out that it actually is something.. and you arent crazy after all... but for all of you out there that have not been diagnosed with MS.. I hope for your sake its something a little less cruel... Ms to me is a cruel disease... it lets you think everything is going to be ok.. then bam.. something new... some get sick.. some never do... its just a very unfair disease.
Blessings to you all and I hope you all become well.
Oh by the way.. I also have Hypothyroidism. (take levoxil for that)And acid reflux... bowel problems and its hard for me to urinate... sound familiar?

Stacey
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Avatar_n_tn
oh sorry and i forgot to mention.. my numbness in my left arm wakes me from my sleep almost every night. Not only that .. at times it feels like razors doing down my arms .. like they are traveling in my veins or something.
At times I feel short of breath like my lungs just dont work properly, I get pains in my abdomen and back and in my groin area...cramping in my calfs if I stand for a long time, continual headaches and stiffness.
I am a 35 year old female that was totally athletic growing up. I show dogs and work a full time job. All I can say... take it one day at a time. My brother is also having problems with HYPERTHYROID and Panic attacks. Niether of us were ever very sick as kids.

I would like to know if anyone else has had:
1)reaction to live meassles vacines as a child
2)Mono as a kid (Epstien bar virus)
3)any kind of parasite as a kid
4)had a glamaglobin shot
5)Grew up in El Paso Texas or other areas of Texas

I am just trying to figure out some things for myself.. if any of you have had any of these in the past please email me
***@****
Thanks
Stacey
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I was interested in the comments I read.  I had a major EBV infection back in 1991 and was incapacitated completely (couldn't even go to the bathroom by myself) for several months.  It took 5 years to feel half-way normal.  I had severe neurological damage, in my left side, the shakes, twitching, and seizures.  In 1997, I was bombarded with severe ringing in the ears (tinnitis) and hypercussis (hyper sound) and buzzing, static, and clicking.  No specialists have been able to help me.  I have ordered homeopathic stuff from Africa, and am on several different vitamins, herbs and minerals that have been recommended for this.  I am a nervous wreck, because I hear these sounds all night and all day, naturally affecting my sleep and feeling of well-being.  I have a sneaking suspicion that much of this has worsened over the past several months because my 13 year old daughter was diagnosed with liver cancer, and we've been living a nightmare with this.  I believe that any time you have a trauma or great stress, those old post-EBV side-effects can be reactivated to a great degree.  I'm hoping (and praying) that as we get through this trial in our lives that everything will calm down.  I have great compassion for those who suffer from the effects of EBV, as it lasts a lifetime.  Any comments?
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Hi all,

While I have some of the same symptoms as far as right sided weakness, right foot drop, incoordination.  I also have Bladder retention, loss of peripheral vision on right side, slurred speech, cognitive problems, severe headaches.

It took me 4 years ... many doctors and tests before diagnosis.
I have Lupus which caused central nervous system vasculitis

I know it's easy to get discouraged but some of these illnesses are extremely rare and tests to diagnose are extremly invasive. In my case it took a brain biopsy and a staff of neurologists and rhuemetologists.

Some tests that are less invasive and very useful were the SPEC scan (blood flow within the brain)
and PET scan (shows how the brain is utilizing glucose)....glucose is food for the cells (brain synapse) and if it shows areas with Zero or decreased glucose uptake, they know that is a problem area.

Very best of luc in your search for answers,
Sandy
P.S.  if you would like more info on central nervous system vasculitis.   www.cnsv.net
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Wow, reading these posts were the first time I actually felt someone understood exactly what kind of pain I am in. Even talking to the Dr. and Chiropractor, I felt like. I don't know if they understand what I'm talking about. They kept refering to lower back pain, but my back doesn't hurt. Maybe a little in my extreme lower back and hips but..My behind hurts!! the back of my left thigh hurts and is numb! I don't know exactly when or how this happened but at first it wasnt' numb (about 2 or 3 wks ago, but I had discomfort sitting in the back of my thighs, both of them, but I could walk it out. As long as I was standing or walking I was fine, but sitting (OH LORD!!) laying wasn't all that great either but not real bad. Then one day, I layed down on my back and fell asleep, when I woke up, I couldnt even move or lift my head. I ended up in the emergency room and they gave me shots and I've been going to the Dr & Chiropractor every since, I was layed up for about a week and went back to work last week. It's better in that I can sit down now and I use ice and take relafen and soma. the Chiropractor uses something like and tins unit(sp) and that helps.  What I'd like to know is, is the numbness a part of it? How long does this last and what can I do to get over it. Am I messed up for life?  jojo
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Wow, so many of us in limbo!  Eleven years ago, I had numbness and tingling in my right leg, muscle twitches at rest, night sweats and frequent urination at night.  GP sent me to neuro who gave me an MRI--looking for MS.  I thought I had a pinched nerve or something.  Well, MRI was normal and doc said I seemed depressed and offered the name of a good psychiatrist.  I told him to stuff it.  Yeah, I was depressed, but depression did not cause symptoms, symptoms caused depression--discomfort, restlessness and lack of sleep!  I told my husband it would go away or kill me, but I would not go through someone accusing me of being a hypochondriac again.  So, I learned to live with it.  I was 28 yrs old.  At age 34, I became pregnant, had a hell of time.  Both hands went numb at about 7 months.  OB/GYN said it was probably carpal tunnel and that the feeling probably would not come back until after the baby was born and the swelling was gone.  He was right.  Took almost 2 months.  My husband bathed and carried the baby (who is the most precious 3 1/2 yr old God ever sent to earth) all during that time because I was afraid I would drop him.  My hands ached and the knuckles swelled (looked like arthritis to me) and turned red.  Pain in my hands, wrists, shoulders and muscles in my neck finally forced me to go to a new GP (haven't been to the doctor, besides OB/GYN in 11 yrs) and tell him I wanted my carpal tunnel fixed.  Well, guess what?  No carpal tunnel, nothing visible in Xrays or bloodwork, although by looking at my hands, there is obviously something going on, even the doc said so.  He sent me to an ortho, had nerve conductivity tests which were fine.  Said I had hyper reflexes in my legs. Said I may have an auto-immune disease and sent me on to a rheumi.  Rheumi looked at all the blood tests and xrays and said my symptoms were not related.  Said I had bad rotator cuffs, degenerative arthritis in my hands, and strained muscles in my neck and shoulder.  Oh well,..Meanwhile I still have night sweats and muscle twitches, ears ringing and eardrum twitching every frickin' day of my life, plus in low light, I now have a spot in front of my right eye, can't see anything. During the day, it's not there or un-noticeable. Well, the rheumi sent me for physical therapy which helps some, but the therapist is scratching her head 'cause nothing is improving--I go twice per week and faithfully do the excercises at home.  At this point, I am willing to do anything to stop the pain and aching.  Now my knees hurt, the doc says I have some kind of disorder that the knee cap hangs instead of floats. Causes a burning aching pain all around the front of the knee, excruciating climbing stairs sometimes, but not always.  Twitching in my arms below tri-ceps driving me insane.  PT put anti-inflammatory patch on yesterday--I had pain and tenderness in thoracic spine T-4.  Muscles in neck and shoulders feel some better today, as well as less pain in the spine.  PT keeps asking about the tests I had done, she said she can't believe it's not systemic.  I can't either.  I am on no medication, other than anti-inflammatory.  I really don't know how much longer I can take this without muscle relaxers or pain medication.  It is consuming my life at this point.  I have so many wonderful things going on in my life right now, and I hurt too bad to enjoy any of it.  Sorry I took up so much space..I've been holding this in for 11 yrs, you understand.  Anybody had the eardrum fluttering thing?  It happens at night just as I am drifting off, or sometimes it is triggered by the sound of running water or unfortunately, my husband's snoring.  I have had to move into another bedroom because of it.
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Wow,

How is it possible that so many people, including myself, have these weird symptoms with only a few doctors recognizing them?

If I talk to my docs, I don't see any sign of recognition in their eyes! How is it possible no health center exists for undiagnozed diseases? Probably a commercial reason?

I have so many weird neuro symptoms but mine are aggrevated by simple triggers. I can not lift anything heavier than 500 gram or an instant outbreak of symptoms occurs. Same happens when my nail hits something. When I gently rub the skull's skin my spine is paralized for a few seconds and my eyes become very sensitive to light. They become painful with preasure behind them. THIS TRIGGER IS SOMETHING UNIQUE I never saw any post mentioning this.

My GP believes it is all because of the psyche and sent me to a shrink and grouptherapy for people with unexplained pain. Th therapy is almost finished and din't help me. What the hell am I doing at the shrink? I am sure it is nothing psychological. The symptoms just drive me crazy.

My neurologists honestly told me that they can not explain and diagnoze every problem. None of them suggested my psyche to be the cause.

I suppose we still no just a little about the human body and have to hope that a new generation wil have more answers.

I had to laugh a lot while reading michael's mail. He's right. However, do not give up to find an answer since your disease may be progressive (mine is). It becomes much harder to invest energy in looking for the cause if your general condition becomes even worse!

All the best to everyone.

Rody
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Stacy!
I also have been diagnosed with anxiety disorder...probably triggered by my appaling health. There is never any trigger for the symptoms...but I feel like I'm dying when I have a severe attack. I have been taking Zoloft for 2 yrs now...have no side effects, and the only time I have an attack now is if I'm in severe pain....or forget to take a tablet! I also have most of the symptoms described on this page...and many other problems.
No wonder my body is reacting with anxiety attacks!!!
I have found that the best thing to do is to keep pushing myself to do as much as possible with my life. I have been through stages where I can't get out of bed...but I try to find some reason to make myself get up and moving!!!
I am only 29 and cannot remember ever being healthy!
I am lucky to have a doctor that believes in me...and keeps pushing for answers...hopefully I will find them one day! But untill then...I refuse to be a slave to my pathetic excuse of a body! Smile!!!
Huglbugl
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I have been experiencing similar symptoms since December.

- tingling that is widespread (face, back, arms, legs, etc)
- numbness if I drink in my chin, gums, jaw and lips
- pain all over, especially near rib cage
- increased washroom visits (I am known for having a bladder of steel!)
- dizziness and lightheadedness (sometimes my knees give out)
- intense fatigue (I think I can, and want to do things but when I try I am useless).
- weight gain because I just can't seem to do anything
- incredible stiffness in my legs, arms and feet
- a twitching right eye
- trouble breathing
- an inability to stay focused
and more I am probably forgetting.

I have been feeling terrible and have tried to get help from doctors.  I have had every blood test done in the book, and they show nothing.  I have had a chest x-ray, face x-ray, an EMG, two carpal tunnel tests (including arthritis), and I did an MRI a year and a half ago (for unrelated headaches before this began) and they all showed nothing.  Yesterday I went to my family doctor I've been seeing since before birth, and he was so confused... he suggested I go to a rheumatologist and an internist, but I don't understand why. I am tingling all over and he thinks it is in my joints?  I am no expert, but I was under the impression that tingling was a neurological phenomenon, and my family agrees.

I used to be a pretty healthy person, but over the past while I feel like a hypochondriac, except that I know the symptoms are real.  I want to be my old self again, and I want someone to tell me how to get there, but no one seems to take this seriously.  I typed up a long list of symptoms, medical history, everything, and my doctor wouldn't even read it.  Do I really have something wrong with me?  If so, where should I go next to get it fixed, or at least recognized?  I am 21 but I feel like and old lady.  I just want my life back.  Reading this forum atleast I know I'm not alone, I hope we all whatever it is we need to feel like ourselves again!
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Hello to everyone who has posted under the subject of Unusual symptoms.  I, too, had (I emphasize "had") nearly all the symptoms you complain of.  I was stricken while on a driving trip on Pacific Coast Highway.  Our destination was Monterey, California, and right around Cambria (near Hearst Castle) I noticed what I thought were flu-like symptoms combined with car sickness and anything else I think of to blame how I was feeling.  I was 32 years old at the time and for the next eight years, my symptoms were nearly impossible to live with.  I went through a battery of tests and was sent from one doctor to the next, all specialists in their field.  A few months after I became ill, my husband, who has juvenile diabetes, was also stricken with what we began to call our "strange disease."  I would no sooner get my stomach problems under control, only to have my vision go heywire.  My muscles ached so bad at night that my husband had to "pack me" in pillows to try to relieve some of my pain.  At work during the day, I lived in increments of hours (When could I take a break?  When was lunch?  When could I go home?)  My low back (bottom) hurt so bad I could hardly support myself in a chair.  My husband's symptoms were similiar except that having diabetes took his symptoms to the extreme.  He had sores in his mouth, his diabetes was out of control at times (and he is a very controlled person and follows diet, medication and exercise precisely.)  We were both ill for a very long time.

Eventually, I was diagnosed with fibromyalgia, and also with chronic fatigue syndrome.  My husband was diagnosed with pernicia (sp?) anemia.  These diagnoses did not raise our spirits.  We were left completely dissatisfied by the medical field.  

I truly believe that although medical science cannot run a single test and point to a specific test result, and state, "there, that's exactly what you have - this test prove it", that there are still many undetectable illnesses out there and that you and my husband and everyone else on this site with common symtoms (symptoms) are truly ill and not hypochondriacs.  You are not losing your minds.  Your symptoms are not caused by stress or your imagination or something you ate or your hormones.  (Although I do believe stress and other factors can exascerbate your symptoms.)  You really do have something wrong with you and medical science can only guess at what it is, if that.  

So, hang in there.  My symptoms did subside a bit and my life is a bit more tolerable now.  Just as one of you wrote, you do try to adapt and your image of normal has to change in order for your very survival.  Life threw all of you a tremendous curve ball.  It's not fair and it's hard to keep your spirits up when things are at their all-time hardest.  You are desperate to return to your old life.  Your friends and family are concerned about you but you can see a bit of doubt in their eyes.  Is she really ill?  Or is she crazy?  Is she just bidding for attention?  Why can't her doctor do something for her?  You start to keep your complaints to yourself but this is next to impossible but your disablity is so incredibly invasive. It affects every task you attempt, every move you make, every function of daily living.  As I write this, I firmly believe that most of my symptoms have gone into a remission of sorts.  I still have some bad days, but I also have some of what I call "75 percent normal" days and relishing these days and remembering these days is what gets me through the bad ones, because on bad days, I keep telling myself that I'll have a good day soon.  I have more good days than bad right now and for this I am very greatful.  Someday medical science will catch up and we will be treated more effectively.  Until then, hold on to your good days, or simply your good minutes.  Hug your children, your spouses, your significant others.  Pet your dog or your cat.  Have a good cry.  It will release endorphines that will make you feel a tiny bit better, even if it's only for a few moments.  Remember that you are not alone.  

Debbie
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Debbie,
Thanks for the validation.  I think that is the biggest thing to deal with--that people-doctors, spouses, friends-look at you as though for some reason, you feel the need to gain attention or sympathy by pretending to be ill.
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my problems began in may 1994, I was diagnosed with a herniated disc in c6 and c7, i too have had all of the horrible symptoms everyone describes, tingling, numbness, pain, in my arms, legs, etc. i also have carpal tunnel in both wrists, i have pain and pressure in both temple areas on my head, i have very dizzy spells and almost pass out but haven't as of yet, all over body swelling, extremely tired and aching all over all of the time. just had another mri and it showed arthritis in my left upper body, my herniated disc is on my right side...so far so good, huh? i was taking prozac up until a my ins co decided they did not want to cover it (helped me more than anything ever has!!!!)i just started taking zoloft not working for me as good as prozac did, i have a lot of nerve problems due to my disc pressing on my nerves. i feel deeply sympathetic for all of you ! hang in there and keep smiling...i guess it could be worse
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God, I can't believe there are so many other people on here that are seemingly going through the same thing as I am right now.  A year ago this past March, I've been having much of the same hell as all of you.  It started out with numbness, burning, tingling, and loss of sensation in my lower legs, which then progressed to include extreme muscle weakness in arms and legs, extreme mental fatigue and lack of concentration.  Since then, I've been on a roller coaster ride that includes occasional muscle twitching, cramps, neck and jaw pain/stiffness.  Also, sometimes I'll feel "jerky" or uncoordinated, like when I'm walking, it just doesn't feel right... as if I'm being pulled back, or things have been thrown off balance.  This numbness or loss of sensation feeling constantly comes and goes, and can be felt also in my face, fingers, legs, shoulderblade, whathaveyou.

I've been to two neurologists now, have had a normal MRI, normal spinal tap (one ogliclonal band, but the docs said it's not necessarily indicative of anything), and a normal nerve test... I couldn't deal with the pain of the needle EMG a year ago, the docs REALLY want me to have another one, so I have one scheduled in a few weeks.  

I also have juvenile rheumatoid arthritis, which I've had ever since I was a baby (I'm a 27 year old female).  Needless to say, this **** SUCKS.  Sometimes I have "good" days and sometimes I have "bad" days, but as that person above so eloquently said, my perception of what is "normal" has had to severly change as of over a year ago.  Nobody can tell me what is going on with me.  At one point, they thought perhaps MS, but now they think that MS is "very unlikely" because I have no lesions.  I've had SCADS of blood tests, but to no avail.    I'd think this were fibromyalgia, but I don't seem to have as much PAIN as those folks have.  Instead, I just can't walk, or STAND for ****.  This illness has had an extreme affect on my life, and in combination with my athritis really makes things quite a challenge.  I'm angry that nobody can tell me what's wrong... I'm angry that I have to have yet another TEST that will probably do little to NOTHING to actually help me reach a diagnosis.  And even if I do have a diagnosis, will anything actually be able to HELP me?  Who the hell knows, at this point.  Reading your posts have helped me stay strong, though, with the knowledge that we can all help one another out when everyone else things maybe we're a little bit crazy.  I know I'M not.  

--4s.
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Hello,

I too have had many of the symptoms you all have. Mine are alittle different in that I have tremors. I shake all the time. Especially when I lift my arms and legs. I don't know what's wrong with me. I've gone to to doctor's so many times and they keep telling me nothing is wrong.

My symptoms are:

Lightheaded
Tremors
muscle twiching
occasional fever

Does anyone have the same symptoms with a diagnosis? I can't handle this anymore. The worst part is thinking that I will never feel normal again.

Monica
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Hi, to everyone.  I just found this site today.  I had a doctor's appointment on Monday and quess what, He doesn't know what's wrong with me. Its been almost 2 years.  Both feet are completely numb up to my ankle.  It is so bad that I had an open wound on my foot and didn't know it till the day the infection swelled up to my ankle.  Have loss of sensation to my calfs and both hands are tingling and numb, the right is the worst.  I have had 3EMG, 1 VER, 1 SER, an MRI, and every type of blood test, still nothing.  They were leaning to MS but now nothing. He says maybe a need to see a Rheumotoid doctor.  Just wanted to say, it is comforting to see that I am not the only one without answers.  Never really thougt about fatigue as a symtom, but I can sleep for 15 hours and I am still tired.  God Bless to everyone.  Hang in there.
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HI!
I was reading all the comments and wanted to advise those who have not had one to have a spinal tap and an eye exam of the optic nerve. I have had all of the symptoms and more and was diagnosed with intracranial hypertension five years ago. I also have lupus and am in the process of being worked up for myathenia gravis.

If you can, have a spinal and brain MRI - I never got a spine one. If you are on dierutics remember that they can make you feel dizzy and tingly as can hypothyrodism and heart problems, and a few other diseases that arn't neuro based. I would advise an echocardiogram as well.

I had lupus for yeears before being diagnosed with the IH and the  entire time I had the IH i kept telling them about my muscle burning and fatigue, terrible fatigue after exhertion and by the end of the day unable to even use muscles, tingling and so on and it's not until now that an EMG was done and the MG blood tests. EMG was not normal -s till don't have the blood work back.Lupus can also cause many and mostof the symptoms here but is an easy blood work up.

MS can be very deceptive for years and eyars and years but many ,many things including chronic fatigue and fibromyalgia and IH can cause your symptoms.

I havea friend with severe chronic fatigue and she has all of the symptoms including bowel problems and sleep apnea and orthstatic hypotension (another cause of dizzyness).

These things can be really hard to diagnose.

A spinal tap is good because if you have MS the cells will show up in the fluid and if you have IH you brain pressure will read too high.

Symptoms of IH

Papilledema (have you had your eyes checked for optic nerve damage)

pressure severe headache behind the eyes, vomiting, nausea, dizzyness, ear ringing, whooshing, pins and needles, fatigue, muscle fatigue blurry, double vision, visual disturbances )hallucinations), some of us have more serious neurological defects such as memory loss, confusion, trouble walking and excercising and so on - even breathing. (not everyone has all of the symptoms but everyone has increased pressure and papilledema)

symptoms of orthstatic hypotension

dizzyness on standing, fainting

Chronic fatigue and fibromyalgia

cause all kinds of issues -dizzyness, irritable bowel, confusion, orthstatic hypotension, sleep problems, muscle twitching,numbness, tingling - the list is really, really long and quite disheartening.

One thing to remember - if you have had all the tests more than once you probably have Chronic fatigue as that is undiagnosable by blood work. Fibro is diagnoses by trigger points.


TEsts I've had and would recommend becuase you can have it done in the US if you want too.

EMG and RNS (rapid nerve stimualtion)
echochardiogram (for dizzyness, breathing problems - catches what ekg's don't)
ekg (or is the heart one eeg??)
MRI brain and spine
Blood work ups for Lupus,hypothyroid,hormones, arthritis and so on
Urine test
spinal tap (no fun at all )
Eye exam for health of optic nerve (usually the first to damage in Intracranial hypertension and brain tumors)
Fibromyalgia trigger point test

I wish everyone luck - I know how hard all of this is and how hard it is to be ill and not have people listen to you!!

Good luck,
Kerry
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WOW!!!  I am so happy and relieved to know that I am not the only female in my age bracket (31) with weird symptoms.  It all started this past Memorial Day weekend.  I started having vertigo (dizziness)in my head, things around me did not move but I felt as if I were moving and having moderate intensity headaches.  At that time all my blood work was normal.  Then a lovely sinus infection kicked in.  It was bad enough that my Doc wanted me to have a MRI to see exactly how bad the sinus infection was.  Well, I had the MRI which revealed that I have sinus disease in the maxillary and frontal sinuses and that I have white spots (demyelination of the grey matter of the brain) which could mean MS.  My primary doc says it is not, my ENT doc says no, and my Neurologist says no.  But too many more weird things are happening to me and I thought maybe I was just a crazed hypochondriac or something.  I tend to keep my feelings kept in because I am afraid that everyone will think I am out there.  But after reading all of your situations, I am starting to think differently.  Sorry, I got a little side tracked.  To continue, I still have the dizziness and headaches.  They are joined by a sore neck which all my docs and PT man says is tension headaches and tight trapezious muscle.  I still am bothered with the sinus stuff although they are not infected anymore but still full.  Now they are saying it is allergies.  But the scariest thing is that within the last 2 weeks I have been feeling tingling sensations in my lower arms and legs.  They however are not numb, mo muscle weakness, no sharp pains, just tingling.  Every once in a while my head feels as if it is tingling.  Now that is plain old scary.   My doc says he will do ENG testing if the tingling persists.  And I see my neurologist on Thursday of this week.  A lot of you mentioned having urinary problems, vision problems, ambulation problems, or even nausea problems, I have NOT experienced any of these.  

I know I went on and on, and my English is terrible, but I was just happy to know I am not the only one in this world that is worried, freaked out and upset because no Doc can tell me what is truly the matter with me.  Thanks for listening and please reply with any information possible.  Jodie
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Alas me, if I did not know how all of this is true.

My story:  46 to male suddenly (June 15th) had tingling and numbness spreading up from my feet and in my hands.  Occasional numbness of right side of face.  Even my penis has gone numb (great, huh?).

Went to see PCP ... sent me to neurologist who, in first exam, found me "completely normal" and sent me for a neck MRI.  That was negative and in the four weeks after the neck MRI to the next appointment with him I went downhill, at times barely able to walk as my right leg was very, very weak.  My wife says it was so weak a child could push down on it and it would collapse.

Went to see the neurologist of the follow-up appointment.  He said everything was fine in the MRI.  I demonstrated to him that I walked like a drunken sailor and have noticeable weakness.  He agreed and sent me for brain MRI and spinal tap.

Two weeks later saw him again ... found low B12, high homosysteine, and elevated protein in the spinal fluid.  Brain MRI was normal (although he DID see an unusual 'artifact' in the scan which he said he would follow up on; when I asked him about it Tuesday, another two weeks later, he said, "Oh, yea, I ought to do that.").

He said that probably wasn't a CNS problem, come in for EMG studies.  He named CIDP (Chronic GBS) as the likely culprit or, of course, UNKNOWN.

So, this Monday I went in for the EMG and he practically electrocuted me and then pronounced it 'completely normal.'  He insisted that I come in the next day for a follow-up.

Here's the upshot and the kicker:  I came in with my wife (as note taker).  He announced that some tests were borderline (as described above) and not really indicative of any particular disease.  I expected that and am thankful.  He then said, "Since I know that you do not have a big ego I will tell you something I would not tell 99% of my patients" and then went on to say that I had exaggerated and made up my symptoms.  Not only that but he claimed not to remember that I had low B12 and high homosysteine (he said that elevated protein was not enough for a diagnosis without clinical observation and I said
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I have some of the same symptoms.  It started out with tingling all over my body.  I don't have a whole lot of that now but now I have a single musle spasm in my leg.  Does anyone else have this.  I have not had an MRI done yet.  But my blood work did come back normal.

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I am somewhat comforted to read that so many others are experiencing similar symptoms.  My problems began on August 13 (my 30th birthday).  At first, I experienced slight pain in the forehead which I figured to be a sinus headache.  That evening when in bed, I had difficulty sleeping due to pain on the left side of my neck and back of my head.  The following morning my head was numb, and I became aware that my legs felt weak and that my walking was impaired.  Additionally, I began to expereince numbness in my fingertips of both hands,  A few days later I went to the emergency room and was given a CT scan and blood work was done, both of which came back clear with the exception of a slight elevation of my white blood count - I was told this could be indicative of a virus.  As the numbness persisted I went back to the hospital and was told that my symptoms were likely due to a virus or anxiety.  A few days later, the numbness went away and I assumed that the virus had passed.  However, a few days later it returned worse than before.  Now, my hands, arms, back, chest, and legs are numb; it is most remarkable in my hands and chest.  I have since seen a neurologist (inconclusive) and am going in for an MRI in two weeks if the problems persist.  Anyway, sorry I wrote so much; I just wanted to get it of my chest (which is numb).  Like others here I am scared to death that this could be MS or something equally debilitating.
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I'VE BEEN READING ALOT OF THE SYMTOMS (symptoms) SOME OF YOU ARE HAVING AND WANTED TO LET YOU IN ON WHAT I'VE RECENTLY EXPERINCED.  MY MOTHER-IN-LAW STARTED WITH TINGLING AND SEVERE PAIN IN HER EXTREMETIES AND WAS HOSPITILIZED.. NO ONE KNEW WHAT WAS GOING ON CUZ SHE HAD SO MANY SYMPTOMS....BOWELS WEREN'T MOVING CORRECTLY, BLADDER NOT EMPTYING, SEVERE GAS PAINS, THE PAON IN HER ARMS AND LEGS WAS BETTER DURING THE DAY AND SEVERE AT NIGHT.  A NEUROLOGIST, GASTROENTEROLOGIST, AND UROLOGIST WERE CALLED IN AND EVERYBODY WAS STUMPED.  SHE HAD AN EMG AND NERVE CONDUCTION STUDY DONE THAT SHOWED THAT DAMAGE HAD BEEN DONE.  SPINAL TAP SHOWED INCREASE IN PROTEIN,  THE NEURO THOUGT GUILLAN BARRE' WHICH IS AN ASCENDING PARALYSIS.  SHE TOLD US JUST THE OTHER DAY THAT IT WAS CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY. SHE SAID THAT SOMETHING SUCH AS A VIRUS OR EXPOSURE TO PESTICIDES HAD CAUSED HER BODY TO FORM ANTIBODIES AND THOSE ANTIBODIES WERE ATTACING THE MYELIN SHEATH THAT COVERS THE NERVES. MY MOTHER-IN-LAW ALSO HAS THE NUMBNESS AND TINGLING. THE NEURO PUT HER ON AN ANTI SEIZURE MEDICINE AND THAT HAS STOPPED THE SEVER PAIN SHE HAD IN HER ARMS AND LEGS.  THE MED IS CALLED NEUROTIN.  SHE IS SETTING HER UP TO HAVE IMMUNOGLOBULIN VIA IV TO HELP BOOST HER IMMUNE SYSTEM AND TO TRY AND OUTNUMBER THE ANTIBODIES THAT ARE ATTACKING THE NERVE COVERINGS.  YOU ALL MIGHT ASK A DOC BOUT THIS DIAGNOSIS AND TREATMENT.  WE HAVE HAD TO BE PERSISTANT IN GETTING DOCS TO GET SOME THINGS DONE.  ALTHOUGH WE WERE FORTUNATE THAT THIS NEUROLOGIST HAS SEEN THIS BEFORE,  BUT IS VERY RARE.   WE ARE TO SEE ANOTHER NEUROLOGIST IN SAN ANTOINO NEXT WEEK THAT IS DOING RESERCH ON THIS CIDP. (CHRONIC INFLAMMATORY DYMELENATING POLYNEUROPATHY)  I'LL LET YOU KNOW IF THE IV GAMMAGLOBULIN HELPS.  I CAN TELL YOU THAT THE ANTISEIZURE MED HAS HEPLED STOPPED HER PAIN AND HAS DECREASED THE NUMBNESS AND TINGLING GREATLY.   GOOD LUCK TO YOU ALL.  BE PERSISTANT, CUZ LOTS OF THESE DOCS ARE NOT FAMILIAR WITH THIS.
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I have had similar symptoms for over a year now.  They are getting progressively worse. It started with mild tingles in the arms and hands when I woke up and normally went away within a few minutes to a half hour of being awake. I also normally awoke to stiff joints and that would normally go away too. So I ignored it. I would get occasional chest pains with tingling down the left arm.  Not bad, so I ignored them too - I was only getting them once or twice a month. I had a concussion and seemed to recover ok, except for the fact I had continual headaches on the right side of the head. A few months later it felt like a tiny capulary or something burst on the right side of my brain. It releived the pressure and felt like someone gently brushed the side of my head with one finger  - but on the inside. The MRI showed nothing. So I was told I was fine and I went on with my life.  I developed shortness of breath and the chest pains became more frequent. I started to feel fatigued but not too bad.  I decided that I better go see a Dr. - who told me that I was too young and that it had to be stress.  I argued. I refused the Zoloft. I totally disagreed and still do. The Dr. said that if it was not stress it was all in my head. One evening while relaxing watching a movie with the family I got arrythmeas in my heart so bad that the aortic artery on the left side of my neck was jumping around with my irregular heart beat. I could feel something go up the artery cross the back of my head and stop about the base of the right side of my head. So finally I get to see a cardiologist and he too says that that I need to look around the waiting room and look at the age difference. I am a young 38 year old female; therefore I am healthy.  They did a stress test and it came back normal.  After that I learned that Fen-Phen, (which is Redux, Pondimin or a combination of Pondimin and Ionomin) can cause permenant heart damage if only taken for a few days causes symptoms similar to ours.  But the Dr.s don't even seem to care about that.  So the cardiologist says to follow up with the family Dr. I do he runs test and they come back normal.  Now the weakness and fatigue are so great that when the fatigue comes on and I ignore it; because I have a hundred and one things to do, that I get weak in the knees. The past few days I get so weak that I am falling down.  But there is no problem with me. I normally am stronger in the mornings and get weak quickly even after a nap by evening, I am falling alot.  My knees are sore from falling. But there is nothing wrong - supposedly.  I am not stupid, this is not normal.  A year ago, I was driving a semi truck pulling a flat bed trailer, and slinging 3/4" steel chain like it was spagetti. My husband used to have to work to keep up with me and now I can't even take a stroll in the yard with out a stabbing chest pain that litteraly takes my breath away - well something is wrong. I just wish with all of my heart that someone would listen and help. There are so many of us that are afflicted.  I could not even get that Dr. to test for lymes disease. Yes, my memory is effected too. But to passify them I just started to take the Zoloft so I can rule out the stress.  That Zoloft just seems to make me more foggy headed then I already am. I have found it to be no help at all.  Oh, the irony of it all - The Dr. gave my motion sickness medication for my dizziness.  I have traveled for years without motion sickness.  That is not helping either.  If you have any suggestions, please post them on this site as I will check on it often. If makes me wonder if we are being poisoned or something? If it were not for this "whatever it is", I would be a force to be recond with.  Oh - get this I am supposed to see a bone Dr. to rule out any problems there. I can tell you right now he will find no problems. The attorney's office is having me go to a cardiologists office for an echocardiogram because of the medication I took. Oh-by the way the symptoms that I have match the symptoms that damage from the medication cause, but I can't even get the Dr. to blink a mili-second thought on that subject. This weakness is now effecting my daily life-style and effecting my ability to work. I have a husband, children, and bills.  I can't afford not to work. The thought of falling down and having a handcart loaded with soda falling on top of me is not exactly my idea of fun. So we will see what the day brings. God Bless each of you for your courage and strenght. I pray that we find out was is wrong - soon.
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I can sympathize with the severe symptoms suffered by the above individuals.  I, too, have experienced similar progressive symptoms in the form of very painful needle-like sensations throughout my body, especially in the extremities, tingling in my left calf, a buzzing sensation in my feet, difficulty swallowing, decreased memory capabilities, twitching muscles, especially in the eyes. I went to see several doctors, some of which were unsympathetic and stated that there are some things that cannot be diagnosed, others that suggested it was anxiety and others that made me feel like I was going crazy. Therefore, unfortunately, I stopped seeking treatment for two years and let the disease progress because I lost faith in the medical community's ability and/or desire to help me.  Recently I had an MRI of the brain which revealed a couple spots which might be demyelination resulting from MS.  I also had a somatosensory evoked potential test which revealed delays to the tibial region on both sides of the body, and more pronounced on the left. However, I am writing this to let all of you know that there is hope for this condition.  I had a miscarriage last November. The loss of my baby was heart-wrenching.  However, two months after the miscarriage, my symptoms decreased 90%. It absolutely astonished me.  My symptoms had been progressively getting worse to the point that it was difficult for me to exhale into water while swimming and the left leg tingling was constant. Then, suddenly, in January, the majority of symptoms subsided. I very rarely have tingling and it usually only lasts a few hours. The needle sensation used to happen 50-100 times a day and now does not occur more than 10 times a day. Obviously, the pregnancy jolted my body into remission. Scientists need to explore this area further.  After the pregnancy, I also started taking 1300 mg of evening primrose oil twice a day and cod liver oil - both of which may be beneficial to MS sufferers.  Please check with your doctor, however, before contemplating alternative medicines because they may interefere with other conditions you may have or medications you may be taking.  I hope this remission lasts.  Best of luck to all of you.
Wendy
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The orthopedic Dr. - Bone and Muscle Dr. said that I am fine. I got fed up and went to the larger hospital to the ER. There was a great Dr. who actually listened and cared. She ran tests for lymes and rocky spotted mountain. The lymes came back negative - still waiting on the others. Had an MRI on my neck today, because of the old head injury.  They are thinking that maybe I pinched a nerve and that might be causing the problems. My dizziness and falling down is getting worse, I have no choice but to use a cane - it helps but I still fall. On top I have blurred vision now. Before the blurred vision used to come and go now it is more prevelent and stays. The fatigue is absolutely incredible.  

I have a thought - at least it might be a try - we are all in the same boat.  They have no clue yet. I have been doing research on my own like many of you. I have recently discovered that many of our symptoms are similar to that of household and lawn & garden chemical poisoning. I did a search on diazion poisoning the majority of our symptoms were in there.  Try to think about what you were doing a week or two before you got sick.  I was putting down diazion on the yard.  I am going to talk to the Dr. tomorrow and see what he says. Maybe some of the chemical got into our well and that is causing the problems. Maybe it was a chemical in the flea spray. I don't know but I thought I would share that with all of you. Fleas and ticks have been bad this year.  We have been treating our homes and pets with some harsh chemicals - maybe - just maybe we need to look there. I will keep you posted. Lets keep sharing information. God Bless each of you for your strenght and determination. Just remember, You are not alone, You are not crazy - You know your body better then anyone, You know that something is wrong and we will find an answer together; God willing!  - Lightning
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I have had unusual symptoms for many years and wonder if anyone else has had these same symptoms and what your take on it is.  I get a pain, and it has been in the side of my head, my legs, and other parts.  Now I have it sort of in my groin area - it radiates to my lower stomach and butt.  It hurts to touch the skin - like really sensitive, burning, kind of tingling feeling.  Anyone have any ideas?
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This site just popped up on my screen.  So I must have been meant to be here.
Having many of the same symptoms listed here.  I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively.  I am a 48 yr old female who was very athletic and walked 5 miles a day.  Now I do good to walk from the bed to the couch.  I recently had an MRI and full bone scan.  The MRI reveiled white something on my front left temperal lobe.  My Internal Medicine doctor said it was nothing.  The bone scan showed degenerative something with rhemotiod arthritis in my lower back.

I'm not sure they have hit on the correct diagnosis yet.  I have a rather unusual medical history:

age 4 double phnemonia (doctors thought polio - couldn't walk)
    8 tonsillectomy
   15 thyroid surgery
   20 kidney stones
   21 lyme disease
   23 gallbladder surgery
   29 kidney stones
   31 paracarditis
   33 migraine headaches (started after auto accident)
   38 hystorectomy
   39 kidney stones
   41 bacterial meningitis
   42 post tramatic stress + symptoms from auto accident
   43 hives
43-45 major dental surgery abcess (abscess) on one tooth
   46 diagnosised with Fibromyalgia
   47 Restless Leg Syndrome
   48 High Blood Pressure

Have any of you had similar histories.  I am trying to pin point what might have brought this on.

I have also been given some information on Post-Polio.  This Undiagnosed Childhood Polio cause Chronic Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.

One doctor has said that many patients with Fibromyalgia also
have MS.  I have a good friend with MS and Fibro.  We have mirror symptoms.

Please over look typos.

Thanks for being here...any comments are appriciated.
Judee
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This site just popped up on my screen.  So I must have been meant to be here.
Having many of the same symptoms listed here.  I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively.  I am a 48 yr old female who was very athletic and walked 5 miles a day.  Now I do good to walk from the bed to the couch.  I recently had an MRI and full bone scan.  The MRI reveiled white something on my front left temperal lobe.  My Internal Medicine doctor said it was nothing.  The bone scan showed degenerative something with rhemotiod arthritis in my lower back.

I'm not sure they have hit on the correct diagnosis yet.  I have a rather unusual medical history:

age 4 double phnemonia (doctors thought polio - couldn't walk)
    8 tonsillectomy
   15 thyroid surgery
   20 kidney stones
   21 lyme disease
   23 gallbladder surgery
   29 kidney stones
   31 paracarditis
   33 migraine headaches (started after auto accident)
   38 hystorectomy
   39 kidney stones
   41 bacterial meningitis
   42 post tramatic stress + symptoms from auto accident
   43 hives
43-45 major dental surgery abcess (abscess) on one tooth
   46 diagnosised with Fibromyalgia
   47 Restless Leg Syndrome
   48 High Blood Pressure

Have any of you had similar histories.  I am trying to pin point what might have brought this on.

I have also been given some information on Post-Polio.  This Undiagnosed Childhood Polio cause Chronic Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.

One doctor has said that many patients with Fibromyalgia also
have MS.  I have a good friend with MS and Fibro.  We have mirror symptoms.

Please over look typos.

Thanks for being here...any comments are appriciated.
Judee
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This site just popped up on my screen.  So I must have been meant to be here.
Having many of the same symptoms listed here.  I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively.  I am a 48 yr old female who was very athletic and walked 5 miles a day.  Now I do good to walk from the bed to the couch.  I recently had an MRI and full bone scan.  The MRI reveiled white something on my front left temperal lobe.  My Internal Medicine doctor said it was nothing.  The bone scan showed degenerative something with rhemotiod arthritis in my lower back.

I'm not sure they have hit on the correct diagnosis yet.  I have a rather unusual medical history:

age 4 double phnemonia (doctors thought polio - couldn't walk)
    8 tonsillectomy
   15 thyroid surgery
   20 kidney stones
   21 lyme disease
   23 gallbladder surgery
   29 kidney stones
   31 paracarditis
   33 migraine headaches (started after auto accident)
   38 hystorectomy
   39 kidney stones
   41 bacterial meningitis
   42 post tramatic stress + symptoms from auto accident
   43 hives
43-45 major dental surgery abcess (abscess) on one tooth
   46 diagnosised with Fibromyalgia
   47 Restless Leg Syndrome
   48 High Blood Pressure

Have any of you had similar histories.  I am trying to pin point what might have brought this on.

I have also been given some information on Post-Polio.  This Undiagnosed Childhood Polio cause Chronic Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.

One doctor has said that many patients with Fibromyalgia also
have MS.  I have a good friend with MS and Fibro.  We have mirror symptoms.

Please over look typos.

Thanks for being here...any comments are appriciated.
Judee
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Hi. I am a 31 year old male. About 7 weeks ago, I suddenly got disoriented (could not tell which way was up and which way was down, and got dizzy) in the swimming pool while I was practicing scuba diving. I also had decreased sensation all over my body. I was only a few feet deep in the water.  I was taken to hospital and had CT scan first. It was normal. The following morning, I had a brain MRI which was normal again. No stroke, nothing abnormal. Since then I have been experiencing decreased sensation on my chest, upper back, arms, and legs area. For example, I am holding a pen but I feel like I am not holding anything. I sometimes feel lightheaded and have sudden headaches which comes like a vibration feeling and lasts only for a second or so. I also had cervical MRI which came out normal, all the blood tests normal, EEG, EMG normal, a second MRI or my brain normal, visual evoked potentials normal, and last week lumber puncture which was again normal. I can tell you that I had been feeling a little bit lightheaed for 3-4 months sometimes during the day until the scuba accident. In the last 3-4 weeks, I have also been seeing a small black floating spot on my right eye vision. I was so sure that the evoked potentials test would have shown something abnormal but it came out normal! I use glasses and know that my vision has gotten worse in the last year and maybe this black spot is due to something else. I do not have a clue what is wrong with me. One thing that is worth telling is that I have a long history (for about 15 years) of upper back problems. I am 6'4 tall and always felt pain and numbness around the area of the second vertebra and sometimes numbness and tingling feeling on my thighs when I stayed on foot for a long time or exercised intensively. I am 100% sure that the second vertebra is slightly not on the same line with the first and the third ones when I touch that area with my fingers. The fact that I had a heavy tank on my shoulder on the night that I was practicing scuba diving make me think that it is got to be related to my upper back, but my doctor said that the cervical spinal MRI ruled that out and everthing was normal (but I am SURE that there is a small S shape there which I had just mentioned). I saw another doctor 3 years ago due to my upper back problems and the numbness that i described above and they did an MRI which was again normal then. They also did a schilling test and found out that my B12 level was low. They asked me to take B12 orally every morning and have it checked it every 6 months. I have done it since until the most recent incident. Now I am taking shots because my new doctor told me that taking it orally does not do much help. But i had it checked in the last three years and it was normal. The problem is that we dont know for how long it was low when they found it to be low three years ago. Could you please give me your input on my case? I have been living with the fear of MS in the last 7 weeks but as I told you about everything came out normal. I keep touching my chest and legs to see if my sensations are normal and i dont feel like they are. It is still not the same as it was before the scuba accident. Am i losing my mind? Please help. Thank you very much...
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I have looked at all of your symptoms and I have had extremely similar symptoms for the last 2 years.  I have spent over 100,000 dollars in medical bills with no good diagnosis from
doctors.  I finally figured it out for myself and I would bet that it is alot of your problems too.  I wish that I could email each of you individually since most of you posters may not come back to this forum.  My problem was TOXIC MOLD.  I know that you have probably seen alot of this in the media and I did too.  I did not think that it would ever effect me but it did.  Please understand that the mold puts off neurotoxins that can create severe effects. One of them being food allergies.  Please dont write this off and say well that has nothing to do with my symptoms...oh it does.

headache in the lower back of head (always)
brain fog
muscle spasms
fatigue
hot flashes
cold extremities
weird feelings
depression/anxiety

it all fits people....

1. check your house for mold..go to lowes the kit costs $8.00
2. Make an appointment with your allergist.  I bet you are now
   allergic to something that you were not allergic to before
   you got sick!!
3. Swear off sugar and start eating healthier.
4. Dont expect your doctor to know anything about this.
5. Dont wait until it turns into lupus,ms or another autoimmune disease because it will.
6. It may not effect any other member of your family.  It only effects some people.  I think people who are highly allergic.  Doctors will tell you that it only effects elderly and infants but everyone that I talk to with mold was pretty fit before they were sick.

  I never would have believed that mold could have caused all of my problems and that the medical community could be so oblivious.

Progression:
   1. you are exposed to mold or another toxin. (could be something that you are just allergic to and dont know it.
   2. candida yeast will start burrowing holes into your intestines, and gut since your immune system is compromised
   3. You will start developing food allergies from food passing from your gut into your bloodstream
   4. Your body becomes weaker and weaker finally you create so many antibodies that your body no longer knows the difference between something foreign and healthy cells.
   5. You develop lupus, ms or another autoimmune disorder.  This is where the doctor comes and and says...I found it.
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I have been having symptoms for the past couple months of right sided back pain, right shoulder pain, some nausea.  Sometimes the pain is severe and requires ER treatment with narcotics. When the severe episodes are over I am left with a constant ache in my right shoulder.  I had a normal gallbladder sonogram about four months ago but the ER has not repeated this during an acute episode.  My right side still hurts with laughing or deep breathing.  This has been going on constantly for 8 days now, with intermittent severe pain and constant dull ache in the right shoulder and sometimes right side.   Has anyone ever had gallbladder disease present this way?  The only abnormality found on lab work has been an elevated white blood count.  The doctors don't seem to want to check any further gallbladder studies since the sonogram four months ago and are now atributing this to depression, but I am not depressed or anxious about anything.  
I would appreciate any input.
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