unknown neuro problem

[patsy10]

Long story short.  43 yo female. 1992 bullseye rashes followed by neuro syndrome 8 months later. LP,MRI, EMG done (CCF) neuro said CNS disorder of unknown cause.  Took antibiotics (out of state doctor) for 4 months.  Symtoms improved slowly over 5 year period but never 100%.  2005 sudden onset leg weakness, hyperreflexia, urinary frequency, neck pain.  I had c spine MRI and brian MRI w/wo.  Brain normal, neck mild cord compression from disk bulge. Paresthesias were present arms and legs. Dx. cervical myelopathy. Had c spine fusion 8/05.  Symtoms worsened after surgery..numbness, tingling, weakness, twitching, blurred vision,muscle pain all over, burning sensations and much more.  These symptoms have persisted for over one year. I've had 2 brain MRI's, 2 c-spine mri's evoked pot, EMG, LP. All tests normal. Saw 4 neuro's, including Mellen Dr. all said doubt MS.  My only diagnosis is fibro. My symptoms are continuous with episodes of worsening that last about a month.  I have paresthes. that run from left side of face, neck down to foot, entire left side.  They're everywhere else too but worse on left.  I have symmetrical muscle pain neck, shoulder blades, arms, ribs, buttocks, hips.  If I use my arms for a few minutes they become weak and hard to move for a couple days.  This feels like MS to me.  My questions are:  What further tests should I have?  Should my MS testing be repeated?  Can fibro really be this bad?  Could this be viral?  Should I be tested for all those weird autoimmune diseases? myositis?  As sick as I am, something has to show up somewhere.  Thank you.

[lacey29576]

Tell us all your thoughts on what it could be, for my symptoms are real similar. 5 years and going now...

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

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   I sounds like you have been through a lot of testing and are frusterated with your poor health and lack of diagnosis.  The initial symptoms you described sound like possible lyme disease and the second set of symptoms sounds like classic cervical myelopathy, that you did not recover from despite what sounds like adequate treatment.  In patients that have greater decompensations than expected due to a known illness and patients that do not tolerate anesthesia/surgical procedures well the idea of possible metabolic/mitochondrial disease arises.  Mitochondria are the powerplants that live in your cells and if defective can fail in times of stress or illness.  I would suggest that you be tested for metabolic/mitochondrial disorders by getting a fasting lactate/pyruvate form your blood and CSF.  I would also suggest carnitine levels and CoQ10 levels be drawn.  Your blood should be sent for amino acid studies and you urine sent for organic acids and amino acids.  I do not think your symptoms sound like MS, but I would recommend that you see a neurologist that specializes in metabolic/mitochondrial disorders to explore this possibility.
I hope this has been helpful.

[just don]

Patsy,
  I am NOT a doctor but from your post I can tell you almost to a T what you really DO have.  You can email me at saramy 'at'ptcnet.net and put just don in title.  Obviously you have to replace the 'at' with the proper e-mail symbol for spamming purposes here.  Do so and get WELL!!!  Get the FACTS!!!
  good luck,  --just don--

[patsy10]

I hear what you are saying.  You're not the only one who has told me this.  I guess I'm so skeptical because of the testing results.  I did have a WB through Igenex (IGM only).  The results were 30+,39-IND, 41-IND.  My rashes were in 1992.  I was first treated 15 months after the rashes.  I was very sick with fevers, rashes etc...,swollen  joints, elevated liver enzymes, floaters, neuro symptoms with dragging of a leg and more.

[mike1105]

LYME??

[patsy10]

Maybe????I've been treated a couple times for a few months with oral meds.  I've had several tests (WB), never had a positive test.