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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 universal
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 universal
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 universal
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 universal
mwb
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 universal
A related discussion, white Spots on brain was started.
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A related discussion, pins and needles... was started.
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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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Avatar universal
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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Avatar universal
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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Avatar universal
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 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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Avatar universal
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 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
Helpful - 0
Avatar universal
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 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
Helpful - 0
Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
I'VE BEEN READING ALOT OF THE SYMTOMS 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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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