myasthenia gravis and central pain

Thank you very much for your time. I am very confused. I have seen many specialists. I have generalized muscle weakness, ptosis, and double vision - all that get worse towards the end of the day and when i use my muscles or look up, like when using a computer. I was recently diagnosed as having myasthenia gravis based on an extensive exam where a couple neuro-opthamologists kept tiring me out, and used ice to make my eyes open back wide. I have not seen the neuromuscular specialist yet.

However, by a couple of neurologists, after ruling out everything else, I was diagnosed as having an unknown neurological condition (meaning central pain syndrome) and autonomic dysfunction due to unknown etiology.  This was based on many exams and inconsistant reflexes, sometimes showing hyper, other times nearly absent.  I have very much pain, mostly burning that follows no anatomical or dermatomal pattern. I also have a positive babinski relfex, but that too, was inconsistant.

Is it possible both these diagnosis are correct? I have done much research and do match the symptoms of both completely, but I am wondering if they are incompatable? Do you have an opinion? I have already had every test imaginable except LP, tensilon, and single fiber emg. thank you again for your time. it means alot to me.

[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.
   The symptoms and story you provided is consistent with myasthenia gravis. This condition is caused by antibodies (immune particles) that attack your acetylcholine receptors (important for nerve to muscle connections).  These same antibodies have been reported to cause autonomic dysfunction and may be associated with chronic pain.  When these antibodies cause myasthenia gravis (MG) and autonomic dysfunction, they may be related to an undiagnosed cancer somewhere in your body (called a paraneoplastic condition).  Your possible MG can be treated with IVIG or by plasmapheresis.  In addition, medications like Mestinon can help treat the symptoms of weakness, double vision, etc.  I would recommend that you get tested for antibodies that block, bind or modulate your acetylcholine receptors (common MG antibody test, may already be done) and also send a paraneoplastic panel.  You should also have a CT scan of your chest to evaluate for thymoma (sometimes associated with MG).  A single fiber EMG would seal the diagnosis, but may not be needed.  I suspect that your pain and dysautonomia will improve with treatment of your MG, and you should have autonomic testing etc, after your MG has been stabilized.
I hope this has been helpful.

[joeybubbles]

Hi
I am interested to see the answer from the neurologist.  I am 45y/o who has had tinnitus, motion sickness and burning skin sensation for 2 years.  Have otherwise never had problems.  The burning skin can be my face, upper arms or whole body.  I've been to two neurologists and they don't know.  mri's and bloodwork so far normal.  Some parts of my neuro exam have been abnormal at different times.
They've suggested fibromyalgia or migraines.

I hope you find an answer and begin to feel better.
jay

[Annie62]

I think the best test to rule in/rule out myasthenia gravis is the single-fiber EMG.  You usually have to go to a major medical center or university hospital to have it done, but it might give you some answers regarding whether you have MG or not.