Neurological symptoms progressing with no answers

[abcsoup]

In January I began to experience tingling in top of head and in left arm.  That went away but then came burning feet, feelings of having ice packs on my thighs, body-wide muscle twitches, and pain in left arm and shoulder.  Burning feet and ice feelings went away, but the upper arm pain/shoulder pain then spread to right arm as well.  My neuro did a EMG on left arm deltoid, tricep and bicep which was normal, a c-spine MRI which was normal, and CBC, lyme titer blood work which was normal.  My symptoms are progressing, as I get these intermittent feelings of extreme muscle weakness in my arms and/or legs, which come with severe nausea and the need to have a bowel movement.  This happens several times a day, and I am also having great difficulty sleeping due to twitching, feelings of weakness, and internal vibration feelings in my arms.  I have also noticed that after I lift something fairly heavy, my arms will shake afterwards, if I go to do something like lift a can of pop to drink, etc.  I am still twitching all over, and I feel sicker with each passing week.  My neuro is referring me to a major medical teaching university as he doesn't know what to do for me.  Can ALS be ruled out with a clean EMG on just one limb?  I had a brain MRI one year ago due to headaches which was normal.  Could a syrinx or spinal tumor cause these problems?  I'm afraid I'm going to end up in the ER soon.  My thryoid levels are normal and I am not an anxious person.  I'm a 32 year old female and just want to feel normal again. This progression of symptoms is affecting my daily life.  Thank you.

[CCF-Neuro-M.D.-PW]

Muscle twitching in the absence of objective muscle weakness and wasting is unlikely to be ALS. Muscle twitching can also occur (more commonly) in other situations such as an overactive thyroid gland, a pinched nerve, as a result of cold or exercise, certwain medications, as a benign syndrome with or without cramps, or more rarely due to some spinal conditions such as a syrinx or viral infections. Definite ALS requires a diagnosis by either clinical signs or EMG in at least 3 limbs. An EMG is unlikely to be abnormal in an aymptomatic limb. EMG should always be interpreted with a nerve conduction study (where they give electric shocks and measure the muscle response). Widepread twithes from onset are more likely to be of the benign type.

Internal felling that you describe associated with disturbed sleep can be due to a condition called restless legs syndrome. It can be diagnosed by the clinical history, and is associated sometimes with iron deficiency anemia.

I cannot give you a formal opinion over the internet, but you hopefully will get some answers from your referral

Good luck

[heart2heart]

I'm sorry you're feeling this way and I hope you'll feel better soon. I don't know if ALS could progress that quickly..ALS is a slowly progressive disorder. It does sound like you have a lot of muscle weakness. Do you have any other neurological symptoms, like double vision?

[abcsoup]

No, no double vision. My lyme titer came back negative as well.

[bengalcats]

its odd that people mention weird vibration feelings, i have that feeling in my back a few years ago, it was weird, was like a faint warm vibration every few seconds, i never told a dr since i thought it was weird, it eventually went away but for the last 12 to 15 years I have been having tingling in my head ahnds arms and my legs, i get sudden urges to have a bowel movement and break out in a sweat if it happens in public, i guess i fear that i wont find a bathroom.i also get electrical zaps in my spine and have really weird sensations in my brain, I think I have Ms, I have has every blood test known to man, all were good. I am seeing a new neuro tomorrow since my old one doesnt listen anymore!

[que03]

Are you on any dieuritics, blood pressure medicine or huge doses of caffeine?  If your electrolytes are not in balance you will have that weird sensation, twitching and/or cramping and generalized weakness.  All of these high energy drinks people are consuming I feel could bring on troubling symtoms too.

[abcsoup]

No diuretics, no medications, and no caffeine intake.  Thanks!

[bucrepus]

I have almost exact same symptoms, with the nausea coming if I do anything mildly strenous. My twitching has calmed down but still almost 24/7, with more burning and aching limbs now, as well as fatigue spells and 'yucky feeling' quite often. Weakness / numbness /tingling /twitching / vibration (even my teeth slightly vibrate if I clamp them together) all still there. I have had EMG, bloodwork, MRI * 3, nothing... other than an increased EBV virus antibody level. (took a SPECIAL test for this, the routine test for this virus showed normal). I have been 'yucky' since Jan. and really am not getting better. The neuro. said (or he THOUGHT) EBV had hyper'ed my immune system and immune system was chewing on my muscles and nerves, causing twitching / impulses and burning /pain. He said it would calm by itself, but at 6 months to year. I have no normal symptoms of the EBV, but have this crazy neuro stuff. I don't know where to beleive the neuro, which keeps me worried this may be something more serious. I got this diagnosis from a major med facility after being ref by a local neuro, he didn't know either...
BUC

[bucrepus]

I also have bug crawling sensations, these just started about 3 weeks ago, mostly around face / neck and legs. My EBV Cap AG IgGi was 143Hf with a ref range 0-19 and EBV Nuclear AgAb,IgGi was 166Hf with ref range 0-19

[niagirl]

i just wonder if anybody has these problems? i have numbness in different areas of body for three years now. it started with one leg, and since i had implants due to backbone deformation they first had to remove implants. during the recovery period the numbness disapeared. then only six months later it affected both of my legs, this time accompanied with muscle weaknes. i could barely walk. i spent two months in hospital and did all the tests possible. i am healthy. i had cortico therapy and it went away after one month. since then i recieved the same therapy twice more, but had problems at least ten times. every time it lasts for a month and then goes away, with or without the therapy. intesity is always different. does anybody know what this is?

[akel]

I have my 2nd appt today w/ nuero.  Had muscle pain (felt like muscles were in a cramp almost) and was diagnosed with viral myositis - virus in muscles following a virus.  I've had normal bloodwork, neg. for Lyme disease, thryroid normal, checked for vit. d deficiency and that was normal.  Felt better for a month and muscle pain and now twitching is back.  EMG was normal, but haven't had MRI.  Bloodwork also indicated past EBV.
What could this be?

[Nikki123]

Hi everyone.  Just thought I would write a breif comment. I am 34 female and was diagnosed 10 yrs ago with MS.  Many of the symptoms that I am reading  sound alot like what I deal with so make sure to have an MRI done, as it is a very helpful tool in diagnosing MS

[bengalcats]

What are your symptoms now? did you also have a lumbar puncture and how long did it take you to get diagnosed?

[Nikki123]

It took me 2 years to get diagnosed.  I went to the doc many times complaining of numbness in feet, legs , arms.  She told me that I was suffering from anxiety and to go home and start writing a journal. lol Needless to say, I finally got a diagnois after an MRI. No, I didn't have the lumbar puncture.  My symptoms now are numbness, mostly on my right side, fatigue, reduced vision in my right eye, foggy head. It comes and goes, and the heat seems to really bother me.

[bengalcats]

was wondering how did you handle hearing you have MS? I am so scared and dont know where to turn.I will know on Tue sday if I have it. Doctors have been telling me for 15 years that I dont be cause my MRI came out normal but with all my symptoms no one ever suggested a lumbar puncture so I changed DR's.right now i wish i wouldnt have because now i dont want to know.How old are you ? I am 45 female.Which MS do you have and do you have problems everyday??

[Bradshaw25]

This last month was very difficoult for me with lots of stress , I started having face pains all over my gum line and only in side of the face , I got hospitalized for this pain and the CAT scan was negative , my doctor then said that it migh be neuralgia or migraines. As I got better I notice my neck got very rigid and a shoulder bump all of this in the same side of my neuralgia pains (unilateral pains). I went ot the doctor and he made some xrays the only abnormaility its shows was an apparent spasm on my neck. The doctor diagnosis was a severe spasm of neck and shoulder. She gave me muscle relaxers for treatment.In the meantime, I had a few less painful facial pains , but still with that bad sensation on the teeth and jaw.

Could this be early MS symptoms?

[Floxie99]

For anyone who has been experiencing these sensations: have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? If so, you are likely suffering from a severe adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting pain and other symptoms. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Doctors just give them more drugs and tell them it's all in their heads.
The reality is, they have been poisoned by an antibiotic that wasn't thoroughly tested before being released on the public.

If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://health.groups.yahoo.com/group/quinolones

[Nikki123]

so what did the doc say?

[bengalcats]

MY SPINAL TAP WAS NEG OF MS, I AM SO RELIEVED. I HOPE YOU ARE WELL AS WELL, SHE CANNOT EXPLAIN WHY I HAVE THE SYMPTOMS THAT I HAVE.

[DJRed]

I did a "google" search for nerve impulses and zaps, and ended up on this page.  I read the last person's comments, posted 3/29, and couldn't believe what I was reading!  In January I felt a buzz and zap in my head, and had I been on a land-line phone, I would have sworn I was hit by some residual lightening.  I was in no pain, but the left side of my face swelled a little, and my left eye "bulged" a little, and I was concerned.  The ER doc diagnosed a mild stroke, but sent me to another hospital for a firm diagnosis.  That hospital took a CT and an MRI of the brain, and decided it was not a stroke, but my GRAVES was active again - blood work did not support that.  I have had many of the same symptoms the person in the other posting listed, including many bowel movements, however, I am very little pain.  My shoulders do hurt, my arms go numb, and my right knee hurts, my feet burn and itch (there are several graves symptoms here) and then there is this crazy zapping going on in my head and legs.  It is not entirely unpleasant - just weird and annoying if it happens all day long.  I don't know where to turn anymore.  - I used to be a very sick lady, with sever lung problems due to rocky mountain spotted fever (please don't tell me that this is not connected, I have heard it many times).  I have had pneumonia 24+ times, and have been on life support twice for a total of 29 days.  I have managed to get better and to return to work after five years on disability.  The thing that worries me most now, is I walk around in a fog, and am unable to think clearly.  I actually "see" or "read" one thing, and it will be proven to me later that I didn't see or read what I thought.  Ex:  Checking a mailing label two or three times, and mailing a package, just to have chosen the wrong label, and mailing the package to a totally different person.  I'm going to get fired, and I can't find a doctor to help me or tell me what is wrong.

[Corin]

My life has been turned upside down.  Two months ago I started having twitching in my thumb that lasted a week.  I started taking vitamin B12 and that seemed to take it away.  I went to see the doctor because I started having vibrations in the back of my neck, right shoulder and down my arm.  I started taking a whole bunch of vitamins in the meantime.  Then I started getting vibrations in my legs.  I've had an MRI of the brain and no MS and had an emg of the right shoulder and all came out clear.  Bloodwork was fine except high B12.  I stopped taking all vitamins and drugs prescribed to me as the Nueurologist suggested high anxiety.  I had an MRI of the neck, shoulder and c-spine and will get results on Thursday. My mind keeps telling me I have parkinsons or ALS.  Has anyone else thought of this?  I pray everyday that this goes away.  I only get this shaking feeling at night when I'm sleeping and then wake up.  Anyone else get these feelings.  Has anyone found a solution.  I do have high anxiety but who wouldn't.

[jcbaum]

I can't believe there are people out there with the same symptoms as me.  I am 32 F, about 3 months ago I had calf pain in left leg.  Started waking up in middle of the night with a feeling like someone turned a light swith on.  Then started getting numbness in left foot along with a vibration feeling.  Then the burning skin and twithces strated.  I had normal MRI and C-Spine.  Normal nerve test.  One Dr. said it was in my head and it is not!  I am waiting on lymes test, but I am doubtful.  Not really the outdoors type.  Any ideas???

[ngregg99]

I don't even know what to do anymore and I can't believe there are this many people with the same symptoms. I am exactly like abcsoup with double vision. I have had every test out there except test for a virus. My doctors now think I am just fine and said, "Congrats you are just fine" How about that one. I gave him a look and he said” This is good news". Well maybe for him, I want to know what is wrong with me. 7 doctors and 3 months later, I am progressing to where I can barely use my right hand.
   This started with vertigo, Migraines burning and tingling in my head and swollen pain around my neck, then pain, tingling, numbness, weakness, vibration down my right arm and right leg. Now I a have hot and cold sweats, pain, weakness, sometimes I collapse, vibration, fogginess, pain in every muscle(like has been beat up badly, along with nausea and diarrhea’s feel like I am slowly dieing. I can't eat very well and I don't sleep with out Tylenol and pm’s for sleep, because of consistent pain. My MRI's are normal, ct scan normal, nerve test normal. Everything is normal, but me.
   Does anyone have an answer on any of this?

[jcbaum]

Well, not better, but I am not getting worse. I have been talking to one Dr. who believes my symptoms are due to malabsorption issues in my stomach.  I have been giving myself B-12 shots which seem to help with the twitches.  I had my gall bladder taken out 6 years ago and have had stomach problems every since.  It also has been very hard, but I have cut out all sugar, dairy, and yeast products.  I highly suggest reading "Never get sick again" by Raymond Francis.

[sonja129]

I too am really shocked to hear soo many with some what of the same symptoms.
But I have one other thing not only the burning in my upper legs and the massive stabbing pain in right calf. But my voice has gone out. The first time I was horsed voiced for a month, cleared up for about 2 weeks and now again horsed.
I have had blood work/spinal:MS, Thryroid, STD's, HIV- all clear
Now I am having: Lyme Disease, some test on my muscles, as well as I asked the doctor for a T3/T4: I have found a lot of people who did have thyroid problem test fine on TSH.

What are you other's doing for work? I am finding it diffcult because of my previous job i need to walk and use my voice.

Best TO All-- Sonja

[sau_india]

From 3-4 days back, i had a feeling of numbness on right side of face, stifness in neck, little numbness in right side of head, numness feeling in right hand wrist.

i FEEL NUMBNESS IN RIGH side leg and abdominal part also. I have vericose vien in right leg.

I did all the medical tests... all are fine... did B12 test also after reading this blog... it is also OK, result came negative.

from last 2 weeks i was in intense tension. I feel it is all because of TESION in lfe.

have any one been in these symphoms before... what should we do to come out of these symptoms. Any suggestion in term of vitamins etc?

[Aslo2]

Well, add me to the list. Mine started with the bowel symptoms,
like colitis except none was found. Stool turned lighter in color and is soft, and has remained that way for 2 years now.
Then began the neuro symptoms. neck pain lower neck, shoulder pain, burning feet, joints clicking and burning. All tests negative including lyme.
this all lead to anxiety and depression big time. Ive lost my job.
abcsoup, if you are still out there, how are you doing? I would like to discuss this with you.

thanks
aslo2

[jcbaum]

Carol are you still out there?

I just got some results back from my Dr.  My Igenex western blot came back with one band testing positive.  Just one.  The nurse was trying to explain some things I did not understand.  My Dr. said he was calling Igenex to get clarification on the results.  All my other lyme tests turned out negative, but I insisted on Igenex.  Could this be the cause of all my symptoms (vibrating leg, calf and joint pain, pins and needles in hands and feet.  I feel strange praying for lyme disease, but I am!

[Aslo2]

jcbaum,

How did your symptoms start? What preceded it? Was there an instance of strong panic or depression? Were you doing anything different skeletal wise, such as working out more than usual?
I take it your gallbladder was removed for stones that were visible on ultrasound or ct? What happened to your digestion after the operation? specifically.

thanks

[Aslo2]

ps
any unusual meds right before this??

[jcbaum]

My symptoms started with a sharp pain in my left calf about 3-4 months ago.  Then I started waking up in the middle of the night with a feeling someone had turned a neon light on in my entire body.  The pins and needles feeling in left foot.  Then pain in both writs and lower legs.  Then the burning sensation in my skin started along with twiches all over my body.  I had major problmes after my gall bladder was taken out, but that was over 7 years ago (I am 32).  Nothing stayed in my stomach, I went on Questran for two years (for the constipation side effect) but then weaned myself off it.  No new meds.  I do take alot of supplements, but they are digestive enzymes, fish oil, etc.  I also have had a few nights that I wake up with an explosion of pain.  Nights are the worst.  No depression.  I must admit now I am pretty depressed.  It sucks feeling bad all the time.  I think that was all your questions.

[Aslo2]

Hey Jc,
I understand. Ive lost my business that i had for over twenty years. Im now looking at filing bankruptcy. It has seperated me from my family. Friends avoid me. So i understand.
Yes that answers most of my annoying questions. Except about the exercise,physical strain etc.
Let me also take a wild guess on this. When you wake up neon, is about the same time every night, or most nights?

Most people on this thread identify and think their symptoms are identical, but in reality they are not. There are some here that are, and some that arent that close in my opinion. Other than they are all some form of neuropathic symptoms.
I believe that neuropathic symptoms are found to be 70% or higher idiopathic. Meaning the idiots cant figure out what it is from.

Now when i asked what was happening at the begining, i really mean what happened right before the first calf episode. Are you sure there was nothing unusual? Im in touch with quite a few people that are experiencing very similar tragedies, and im comparing factors.Why not.
Were you checked for gluten sensitivity by the way ?
Does what you eat seem to have any effect on your problem?
If i understood you right, you were taking Questran for constipation??? That seems unusual, since your gallbladder was removed that means a more free flowing bile, normally one gets more diarhea (diarrhea) and questran would soak up the bile to stop the d.
Maybe i misunderstood. Questran also qualifies as a statin of sorts, you took it for two years. Anyway, more on this later, if youve had enough, just ignore my posts.
I do wish all of us a return to health, life.

aslo2

[jcbaum]

You are right Questran is a statin, that has a side effect of constipation.  Since I was having diarrhea after every meal, the Drs. suggested I go on Questran.  It worked, I did not have any stomach problems for two years, but then I did not want to be Questran forever so I weaned myself off.  I have had some stomach problems since then, but nothing major.  I tested negative for Celiac diesase.  I did however, test positive for some strange bacteria in my stomach (actually stool) I had to do a 3-day long stool test (not fun).  My blood test showed up low b-12, low B-6, low magnesium, all low fatty acids.  These test were down by an Alternative Medicine MD.  The regular tests that they do in a normal MDs are really worthless.  I also just  got back a low copper test as well.  My AM DR. thinks It might help to get some vitamins through an IV.  But then I have to find someone who lives by me to do that and many Doctors don't believe in it.  I have to fly to see my AM Dr.  You should also check out Ask Dr. Stoll's website.  There is good information on there.  As for something happening right before my symptoms started ... nope.  Nothing, no new excercise program or anything like that.

[Aslo2]

Questran has also been documented for neuropathy as a side effect, not as often as the other statins like lipitor.
I dont know about your alternative tests, i dont know if they are reliable either. At this point, i dont really trust too much, but alternative is no crazier than conventional thats for sure.
If i were to guess, with you and myself, i feel your problems are related to your digestion, malabsorption, that type of thing.
Taking oral vitamins may not help if you are not absorbing them, maybe you could find iv's i dont know who would help you with that.
Bile seems to be a factor. Whether too much or too little, i dont know. But perhaps questran for two years, reduced bile too much, no fat absorption, which would be problems with a, e, k, and to some degree d and b12.
The questions remain on what to do about it before going mad,
and why it is happening. In my case, is there a billiary problem, in your case, your gallbladder is gone so.. what to do.
Keep me posted.You may also reach me at ***@****

[jcbaum]

I will keep you posted.  I will get this figured out.  There is no other option :)

[lucyallude]

Hey there, I wonder if anyone can shed any light on my mysterious and scary set of symptoms.  I would be very grateful for any information anyone can offer me.  At this stage all avenues are worth exploring.  

Three years ago, after I cam back from work in South Africa, I had a series of traumatic events: break up with long term boyfriend, difficult loss of job, loss of all my belongings in flood, death of grandmother.  I believe that during this general period and the preceding year I took one or more unusual antibiotics - for abdominal pain (suspected infection/PID) and a tooth abscess.  Three months later whilst on an outdoor education camp my big toes went numb. A week later my right arm started stinging, a week after that both legs went numb up to the knees and my right hand went numb down one side.  Then came muscle weakness and fatigue that came in great black waves.  

At this stage I had MRI of brain and spine - normal.  Evoked potential tests - normal.  Tests for the usual suspects, Lymes (I think) etc - negative.  Blood - normal.

The numbness in my legs subsided alot but my toes remained numb for a year.  Gradually I regained strength, still weak and low on energy, then had a relapse, with a return of numbess, weak painful leg muscles and fatigue.  Again I improved gradually.  Pain in my legs became frequent, present to some degree for much of the time, but generally fluctuating with good weeks/days and bad weeks/days, and seeming to be worse a time lag after not getting enough sleep.  They also get weak on and off.  The pain is a deep burning aching heavy sensation inside all of both legs in equal measure.  Sometimes the pain 'sinks' down more to the ankles and feet, like very heavy anklets of pain.  I get shooting sensations to the big toes and sometimes to the fingers.

In the past few weeks symptoms have suddenly worsened again: first the leg pain intensified massively and instead of fluctuating has just gotten progressively worse, day and night.  Then my right hand started numbing again.  My leg muscles have gone incredibly weak - walking is barely possibly, just v afew shuffles, or crawling up the stairs.  The legs muscles themselves feel very wierd - as if they are internally and actively 'dissolving' or in some way buzzing/being eaten up.  I'm getting shooting stings/pricks/sensations all over my body: toes, fingers, skin of hands, thighs, face, temples, head, soles of feet, and to a lesser extent back shoulder blades, neck.  These sensations often hit on one side of the body, then a split second later are mirrored by an indentical sensation in the same place on the other side of the body.  At other times they're just random.  I am getting sensations across my hands that feel like they're caught in cobwebs.  Today the shoulder muscle on my right arm started twitching uncontrollably for hours, moving into a constant internal vibration/shake in the arm.  The whole right arm now feels seized-up, incredibly heavy and stiff.  I'm right-handed but typing this with left hand only.  I'm also experiencing extreme fatigue again - a wierd experience - a sudden cloud of irresistable weakness, that does clear and pass somewhat and then return.  My body is too weak to sit for any reasonable period.

I have gone to my GP again, and hope to see the neurologist again in not too long.  i did have a follow-up appointment with the neurologist some months ago but it was during a good period and he dismissed me after checking reflexes and getting me to walk across the room.  I feel like I'm not getting the help I need investigating what's going on.  A healer friend said it sounds very similar to a woman he treated who it turns out had systemic TB, and I had been spending time in South Africa prior to onset of symptoms.  MS is usually the first thing on everyone's lips.  

I hope to see a neurologist on Friday.  Any information on thoughts/avenues of research/people I should see or talk to/possibilities I should consider/ actions I could be taking/ tests I should be pushing for/ similar experiences - would be very gratefully received indeed.

many healing wishes for all those posting here,

Lucyx

[Aslo2]

Lucyx,

Well from what youve told us, there are only two possible causes.In reality there are thousands of possibilities unfortunately. But the two things that come from your story are,
anxiety/depression, or antibiotics/drug reaction.

I have trouble believing that my own problems could possibly be from a/d, but i have to admit its presence in the world today with all these new syndromes like fibro, rsd, cfs, etc.
You certainly had some heavy things going on and im sorry for your loss.

The other thing is antibiotics or other drugs. You may want to see floxie99's post above.

I think the first thing in order would be good blood tests, for vitamin /mineral imbalances, sed rate and other infection markers, thyroid, rheumatiod factors, lyme disease and so on.
I wish you the best. We are all here in bad shape, without answers. I hope you find yours quickly.