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horrible neuro problem for one year
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MedHelp Member's Question

horrible neuro problem for one year

by patsy10, Jun 06, 2006 12:00AM
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
Doctor's Answer

by CCF-Neuro-M.D.-PW, Jun 15, 2006 12:00AM
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
Member Comments (13)

by patsmad, Jun 06, 2006 12:00AM
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.

by patsy10, Jun 06, 2006 12:00AM
To: patsmad
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.

by patsmad, Jun 07, 2006 12:00AM
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?

by timebomb, Jun 08, 2006 12:00AM
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

by bbird, Jun 08, 2006 12:00AM
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.

by LadyEMT, Jun 08, 2006 12:00AM
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

by patsy10, Jun 08, 2006 12:00AM
To: bbird,LadyEMT
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.

by LadyEMT, Jun 08, 2006 12:00AM
I'm going to the ID because my Neuro says my 8 Obands are very high and it is a sign of inflamation in the CNS and indicate a auto immune disorder.....ill keep in touch

by patsy10, Jun 09, 2006 12:00AM
To: lady EMT
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.

by paimbgone, Jun 20, 2006 12:00AM
I too have had similar problems which started yrs ago.  I have had bells palsy, trigeminal