Is peripheral neuropathy a symptom of movement disorder or stiff person?

[soccer]

I am a 49 year old healthcare professional.  Almost 2 years ago, began having very severe episodes of ataxia, lower leg rigidity, truncal buckling, frequent falling.  Episodes increased in frequency and duration.  Diploplia on several.  Severe hand and foot dystonia as well.  Later developed fasciculations, mostly with exertion, though at rest as well.  Had extensive workup at Mayo--from the outset, they seemed to think this was conversion
or factitious.  Perhaps because of the number of symptoms or mostly lack of objective findings.  (QSART was abnormal proximal leg, some minor nystagmus, 2+ clonus)  It was very humiliating.
Local neurologist made provisional diagnosis of paroxysmal kinesiogenic dyskensia (sporadic, no family history.)  Now on Trileptal, Klonopin, and recently started Baclofen.  Acute episodes have been reduced to about two per month for several months.  But, I now have severe pain in legs and thighs, proximal wasting (quadriceps/hamstrings and increasing stiffness of lower back and upper legs.  I have started Percocet prn, but there is no explanation for the pain.  My mobility is steadily decreasing.  Prior to this, I was very active--a runner, long distance swimmer, taught yoga. I can do none of these things now. Sorry for the length of this. I hope you can give me some sort of perspective re:  prognosis, maybe a diagnosis, and if there is anything I can do about the pain.  It is the most disabling aspect at present.  Thank you.

[CCF Neuro[P]-M.D.-RPS]

Dear Blanton:

I am somewhat confused.  If you have true proximal wasting, clonus with increased tone in the lower extremities, then why the diagnosis of conversion disorder.  The presentation of such prominent upper and lower motor neuron signs is difficult to explain, when one factors in sensory symptoms as well.  I think I would not start the percocet.  It sounds like it might be more of a neurogenic type pain and I would suggest something like neurontin (not addicting).  You will have to explain the neurological symptoms in the context of no objective signs on neurological exam?  If the neurologist cannot find objective findings (i.e. the Mayo Clinic), then how can the symptoms you describe be present?  These are symptoms that should be objectively found.  So, I am alittle confused and hence cannot give you a clear path to an etiology.  

Anyway, I would try neurontin for the pain, or you could incrase the trileptal.

Sincerely,

CCF Neuro MD

[soccer]

Dear CCF MD:  Thank you for your prompt response.  I don't know if I am responding in the correct place, but wanted to clarify for other readers.  The Mayo neurologist never gave me a diagnosis; they kept referring to a conversion disorder because the MRI (head), balance studies and evoked potentials were normal.  I had every possible kind of psychological/psychiatric assessment possible; even Mayo's own psychiatrist did not feel this was a conversion disorder.  The neuro findings I mentioned (nystagmus, overshoot, clonus) were noted on my initial exam, a copy of which I requested later.  Their significance (or insignificance) were never explained to me.  The fasciculations, muscle wasting (definite), stiffness and pain have developed over the last six months, after I terminated any further evaluations at Mayo.  The treatment by my current neurologist (Trileptal, Klonopin, Baclofen)has helped tremendously with the ataxia/movement disorder.  However, he admits that PKD may not ultimately be the diagnosis.  I read about stiff person syndrome on your forum and it seemed that it might be a possible diagnosis--however, leg pain didn't fit with that either.  We tried Neurontin and Tegretol, but I could not tolerate them.  However, I myself have prescribed Neurontin for chronic pain and I agree it can be very effective.  Again, thank you for your input; this is a great service.  Blanton  

[Cecil Blanton]

After reading your statements I find that your symptoms are very similar to my own.  Coincidently you and I have the same last name.
I am presently seeking a diagnosis for my problem.  Over the past 3 months I have been to several doctors, and have not  recieved a diagnosis.  

About  mid January  I began losing the muscles in my right foot. Approx 3 weeks later I started having pain in the foot and was prescribed a low dose pain medication. Since then the pain and muscle degeneration have increased to the point where I am in severe pain much of the time and at this point my right foot is paralyzed and it appears the calf muscles in that leg are degenerating now. I am now taking Oxycontin and Oxycodone pain medication.
Various doctors have given me various 'opinions' (1) Diabetic neuropathy(2) nerve damage caused from the radiation treatment I had  in 1999 for cancer (3) collapsed disc -although I have never had back pain (4) tumor pressing on the Sciatic nerve. Thankfully the MRI's have ruled out the  third and fourth opinion. No 'mass' was found. And an MRI showed  I have no back or disc problems other than a little arthritis,which is normal for my age.
I still  have  not been given a concrete diagnosis,which is very frustrating. Meanwhile my condition continues to deteriate.
I would like further contact with you, if possible by telephone or email.

Cecil C. Blanton
(904) 935 - 3804
Email; ***@****
Branford, FL

[mysticgal207]

My PCP thought I was just "stressed out" from my job..... but sent me to Semmes-Murphy clinic in Memphis, where I was diagnosed with focal dystonia (ie: writer's cramp).  It has been a long, hard road... since I also had Cervical spine compression @ 2 levels (C5-6, & C6-7), and have permanent residual from that.. even past the Anterior Cervical discectomy......; Have taken Botox injections, etc...... with some positive improvement, but not enough to warrant continuing them due to the expense.  Now have spasms and pain in my neck again.... after so many years.  I am a nurse and was unable to work for nearly 2 years.....