horrible neuro problem for one year

[patsy10]

Please help.  I've had neuro problem for one year with continuous symptoms all day every day.  Started with sudden leg weakness, frequency, arm, leg paresthesias, severe neck pain.  I was told it was cord compression from cervical herniated disk and had C-5/6 fusion last summer(mild cord compression).  A few days after surgery developed whole body twitching, jerking, paresthesias, weakness numbness, blurred vision.  I've had MRI's of brain(w/wo) 6/05,12/05, C-spine 6/05,9/05(post-op).   EMG  legs 12/05, evok. pot. 1/06, recent spinal tap-no oligoclonal bands, MBP 1.56.  Every  test has been NEGATIVE.  I've seen 3 neuro's, inc. CCF gen. neuro.  The only answer I've gotten was fibromyalgia(CCF neuro).  My symptoms are horrible, I have no quality of life, much difficulty walking.  I have continuous whole-body paresthesias, muscle twitching, jerking, bl. vison, hyperreflexia, weakness.  The spinal tap was recent during an acute episode of left sided paresthesias and leg dragging.  One of the MRI's was done during an acute episode of blur. vis.  and left sided paresthesias.  Nothing is showing up anywhere. I do not know what to do.  What could this be?  Could fibro really be this bad?  I also have continuous pain...neck, between shoulder blades, gluteals bilaterally, arms, hand weakness.  The painful areas hurt to touch, there 100% of the time to some degree.  They also tingle.I had a similar episode of this neuro problem in 1993 that was accompained by fevers, rashes, elev. LFT's, took years to go away.  CCF neuro told me at that time "? idea" but was CNS.Mellen appt.  8/06

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

I cannot give you a clinical diagnosis over the internet, unfortunately, as this site is purely educational

I'm sure you are frustrated as to a definite diagnosis, but as least a serious neurological condition has been ruled out ie MS, tumor etc, and you are having a 3rd CCF Neurology opinion soon.

There is a condition that we are just beginnign to learn about called 'Central Sensitization', where is brain is supersensitive to whats going on around it, and one can get similar symptoms or for instance, chronic headache. Medication are available to 'calm' the brain signals down such as SSRIs, and some of the anti-depressant or anti-seizure medications.

What is really important in symptosm control is a multidisciplinary appraoch inlcuding physical therapy, medication, psychology and psychiatry.

Good luck

[patsmad]

I read some of your previous posts (including one in response to a question I had posted awhile ago) and it sounded like you knew you had Lyme, or were being treated for it. Do you not have Lyme? I've been having a plethora of symptoms for exactly one year, and they suspect Lyme (based on IGeneX testing, symptoms). Could be a shot iin the dark , but I'm still freaking out, and MS just keeps lurking over my shoulder.

[patsy10]

I have read your posts as well.  I am thinking we are both in the same boat.  I am being treated for lyme but I have never tested positive.  I did have a positive band and 2 IND.  The lyme doc says he doesn't know if I have it or not and that it's a clinical diagnosis.  He said the only way to know is if antibiotics make me better.  I'm early in treatment.  So, no I don't have a definitive diagnosis and am still trying to find out what's going on.  I've clearly tested negative on all MS testing but these symptoms are very much like PPMS.  I also did have 3 bullseye rashes in 1992.

[patsmad]

I'm worried about PPMS too - but would PPMS have so many symptoms all at once? Is it because of the duration of symptoms that make it a possibility? Are you on oral antibiotics or IV?

[timebomb]

Your symptoms sound similiar to me.  It is so frustrating when noone can come up with some diagnosis.  I have constant muscle twitching everywhere, but I don't really notice any weakness or atrophy.   I guess if I look or concentrate on finding some I will find it.

Does anyone else have intense muscle twitching, Can you find relief from this.

Terri

[bbird]

I have been dx with Fibro, however I only suffer from intense pain and severe fatigue (also very painful to touch.)  I think that the "Fibro" diagnosis is given when they can't figure out what is wrong with you.   My Fibro or whatever it is, has basically ruined my life, but I do not have the other horrible symptoms you have described.  I hope you find an answer and that whatever it is you have is treatable.   Good luck to you.

[LadyEMT]

Hope you don't mind me posting wanted to let you know there are many limbo landers out here.  I for one have had problems since 97.  Recently, Febuary, I went to ER for ON (optic neuritis). WAS put on I.V. steroids.  Well I'll try and make this short.  Ended up in the hospital due to adverse reaction to steriods.  While I was in, my left leg became paralized. regained some of it back afte a week..  Since then...I will just list symptoms.  Weakness, Numbness, Extra sensitive sensations, incontinenece, Vibrations almost like electic shocks down my legs, fatigue, headaches, twitching, gat issues, i feel stupid, I have had 3 MRIs.( brain, C-spine, and lumbar) showed nothing.  Blood work all normal. VEP...normal...  I do have hypothyroid problem, under control.  Had a spinal tap done recently...only thing found was 8 oligoclonal bands.  I go see a infectious disease specialist on the 15th.  I'm neg for Lupus and Lyme.  
   So any how, I'm out of work and never know when I will wake up not able to walk.  I use a cane.  
Thanks for letting me post
LadyEMT

[patsy10]

Thanks bbird.  I agree with you. The diagnosis is given when no one knows what's wrong.  LadyEMT:  Your story sounds horrible...all normal tests like me.  Are you going to ID for lyme?  Did any neuro think it was MS?  I think the myelin basic protein is the biggest indicator of MS. Best wishes to everyone.

[LadyEMT]

I'm going to the ID because my Neuro says my 8 Obands are very high and it is a sign of inflamation (inflammation) in the CNS and indicate a auto immune disorder.....ill keep in touch

[patsy10]

It's up to you, but I think you would be better off seeing a neuroimmunologist.  These neuro's are at MS centers.  They are experts at differentiating between MS and diseases that mimick MS.  They are extremely intelligent.  Not that ID's aren't but they're not autoimmune specialists.  My appt. for Aug. is at one of these centers. Good luck.

[paimbgone]

I too have had similar problems which started yrs ago.  I have had bells palsy, trigeminal neuralgia,leg weakness, numbness in hands, vision disturbances and occipital head and neck pain. I have seen many doctors overs the years. Been tested for a variety of disorders including ms and lyme and have had a number of cat scans,lumbar puncture (which caused me to have to have a blood patch)all to no avail. MS was not totaly ruled out and fibromyalgia "may be the problem". The doctors seem to want to wait for more episodes before diagnosis. How much more pain do they want me to feel. I am frustrated and have not seen anyone in over a yr. Recently I have been having neck and head pain. I worry constaintly that if I go to the doctors they will begin testing all over again and find nothing and I will be made to feel like I'm crazy.  Where should I start again?, Neurologist, immunologist,internal medicine? I have spent a good deal of my life in pain and want it to stop

[patsy10]

I wish I could help but as you see I'm in the same position.  Are you sure you don't have lyme?  Bell's palsy is classic for it. You can't rely on the testing, it's inaccurate.  You said MS was not totally ruled out.  A normal MRI and normal lumbar puncture rules out MS.  I would consider seeing a lyme literate doctor, which is one who sees and treats lyme on a daily basis and knows the testing is unreliable.

[mila23]

hi im a 22 yr old female and ive had alot of similar problems.ive had 2 mris..and 4 cts.all normal..bloodwork normal! but i get this weakness that hits me out of the blue.n i have to lay down.i get dizziness to the point that i feel like im going to pass out..i get blurred vision..and also sharp pains in m right eye on occasions.i get neck cramps.neck stiffness..and sometimes real bad neck pain!i suffer from migranes almost everyday.my hair has been thinning alot!and i get a vibrating feeling in the back of neck and my head ..i also get either right sided weakness from my head to my toes..or left sided weakness..ive had them both..when i had the right sided weakness i was admitted in the hospital.symptoms of a stroke..my 2 cts came back normal!i was told to follow up with an mri with contrast! my insurance did not cover the contrast so they gave me a regular mri.im still very worried..i feel soemthing is seriosuly wrong.i dont like going to the drs b/c they clasified me as anxiety.they feel all my syptoms (symptoms) are from anxiety and stress.i try to feel that way too..but lately the weakness is comming more than ever and i dont want to pass out one day!!! i alos have sensativity to light.and usually get a rash on my face across my nose when im outside in the sun..i know these are symptoms of lupus.should i go to my dr and have him run tests to find out if it is?or jus focus on the anxiety with psychiatry? i dont what to do please help me!!!