Requesting your opinion....

[mysticgal207]

I had a bad fall in the mid 1980's, fell approx 5 feet,landing on my buttocks, felt like my spine went through the top of my head, creating severe head pain….  I then had severe muscle spasms & pins and needles sensations for several weeks.   Straight film Xrays were negative. 2 years later, I began having pain & swelling in ® thumb and ® index finger when writing,  but  writing was normal and fast enough to get keep up when taking notes during lectures.   Around 1989, I started  having clumsiness & difficulty writing @ work.  Little finger & ring finger of RIGHT hand would “cut into my palm” only when writing.  (Other fine motor movement was, and still is, unaffected; all other fine motor movement is unaffected.)  I could not keep up with job duties,  since my handwriting was progressively slower, & clumsy.  To write legibly, fast enough, & without a tremor, I had to hold the pen BETWEEN my Rt thumb & Rt index finger, while my hand was clenched into a fist.  My PCP then ordered a CT of the brain, cervical spine xray, EMG/NCV, and bilateral hand x-rays, all were negative.  I began having muscle twitches and spasms, over the last 11-12 years.   I then “gave up” trying to find out what was going on, & attributed all my ssx.  to stress,  since I was in a very high stress job, and tried to ignore the problem.   Saw a Family Practice D.O. who said that I had bilateral hyperreflexia, after doing a neuro exam. He said I hadUpper Motor Neuron problems ABOVE the neck,  not AT the neck.  EEG normal; NO cervical MRI;  a brain MRI showed mild cerebral atrophy in the left parietal, (of course I figured “left parietal,  right hand affected”) and I was told to see a specialist.   My PCP sent me to Semmes-Murphy clinic in Memphis (after seeing the MRI report) & a neurologist there diagnosed “focal dystonia of the Rt hand” (ie: writer’s cramp, which I considered was a “crock” diagnosis at the time), and he recommended that I see Joseph Jankovic, in Houston, for Botulism injections, which I refused.  (Personally, I thought he was crazy, when he recommended Botulism).  In 1992,  I sustained a neck injury,  resulting in herniated discs @ C5-6 & C6-7,  which were herniating to the Rt,  causing cord compression,  spinal stenosis,  and severe pain…;  There was a delay of several months before my surgery, & my ssx worsened.   5 days prior to the surgery,  I was asleep in bed, and my whole right leg involuntarily slung to the side of the bed, shaking the whole bed, waking me and my husband up… My neurosurgeon very rudely told me that the surgery would not help the problem with my legs.  The ACD was done, which relieved my pain, PLUS I never had that “flinging leg” problem again.  The surgery took 6 hours (due to the amount of cord compression) & it did NOT help the handwriting problem!  I  had some positive “hoffman’s sign”  on  some post-op neurological exams, but no Babinski.    Several years later, after receiving several steroid injections, I woke up from sleep due to the whole right side of my body,  including my neck, arching really badly for several minutes.  Had severe head pain behind my (L) ear, @ the same time.   I was awake the whole time, and it really freaked me out.  Never had any residual from it.  I began having anxiety & depression  immediately after that, which later resolved.  Buspar helped the anxiety, but made my muscles in my leg so RIGID that I had trouble walking).  The same thing happened when I was given Serzone…. Caused severe headaches & severe leg pain (due to causing leg muscle rigidity & tightness) that hadn’t been there before…..    
1999: carpal tunnel surgery of the right hand, which stopped carpal tunnel ssx, but not hand problem.    Later in 1999, a local neurologist diagnosed me with  focal dystonia of the right hand. (He said I have spasticity in my RT. forearm, but not in my left, when he palpated my forearms when I wrote with each hand).   He also said the longer I write, the more illegible & micrographic it became.   I told him no hx of Parkinson’s in my family, and he said this is a “focal dystonia”, not Parkinson’s.   He said my problems are dystonia, not “spinal”, based on a  “Jaw Jerk” reflex test which he tested me for,  (and documented on my Hx&P) stating it  is “pathological”, which  proves that my “upper motor neuron” ssx.  are from basal ganglia damage,  probably hypoxia-related since I was premature;  said the cerebral atrophy is insignificant, but probably hypoxia-related.  Botox injections that year, improved the legibility of my handwriting SOME, and decreased the micrographia, but not enough to really help, so I quit taking them.   I currently have a lot of intermittently severe muscle spasms in my mid-to-upper back which I take Robaxin for… it helps some, but not all the time (PLUS spasms, neck pain, and a pulling spasm in my posterior left neck making it very difficult to to lift my head up even just after a few minutes of doing audits and paperwork).  Neck usually doesn’t hurt except from my job activities.   I do NOT have Wilson’s disease…, and I am not of Jewish descent.   From what I have told you, do you think the “focal dystonia” diagnosis is correct, or a farce??   I know you can’t, and won’t, diagnose by phone, but I am asking for an “off the record” opinion.   I have been told THREE times by 2 different neurologists (the one @ Semmes Murphy in Memphis AND the local neurologist) that this is the correct diagnosis.  If it didn’t create a problem for me in my job, I could ignore it.  I have tried all kinds of assistive aids, which don’t work very well for me.  Do not want to try oral meds, due to side effect risks.  My joints on the affected (Right) hand are very SORE, and getting worse.  I am “killing my joints” by writing this way.   These are my questions:    What is the total significance of the “pathological jaw jerk” reflex, since I also have bilateral hyperreflexia, as well as the so-called focal dystonia (ie: writer’s cramp)…….?  I have not been able to find much info on “jaw jerk” at all, but some of the info mentioned something about C5-6 disc involvement.  SO, I would appreciate your suggestions or opinions regarding what this might be related to...  The basal ganglia correlation, spinal, or Dystonia?  Or “Stress related”?  (I am very busy but don’t feel particularly stressed except for trying to figure out how work around this problem, so that I can keep my job and not have pain from writing the way I have to.  A computer will not work for what I have to do.)  

(I apologize for this being so long).

Thank You for your suggestions & your time!

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

Dear Stormy:

I am sorry to hear about your problems.  From your description, it does sound like writer's dystonia.  Actually, the botulum toxin treatment is the treatment of choice.  There are no systemic effects and the help lasts for months.  Other parts of your symptoms sound like a focal dystonia involving the upper portions of your body.  Parkinson's isn't so defined anatomically, and you have more symptoms than you describe.  Unfortunately, the latter types of dystonia may be helped by botulum toxin but not as well as with writer's dystonia.  Medication may offer the best help, unless your a candidate for deep brain stimulation surgery.

Sincerely,

CCF Neuro MD