Need an analysis of situation

[mabel]

I have several issues involved with my problems.  I have been diagnosed with sensory neuropathy of unknown origin, MG, keratoconjunctivits, Grover's disease,and radiculopathy of a lower limb.  I have numbness in my hands and feet, a large indescrimate numb area on my upper left back, and some on my buttocks.  MS I believe has been ruled out.  There are no impingements on my spinal MRI's and brain is clean.  I am in my late 30's and do not drink.  Lab tests have been normal except for the MG antibodies, one which came back high which is indicative of a thymoma, but so far the cat scans have come back normal on the thymus.  My total protein has been dropping steadily throughout my testing ex: 7.1, 6.4, and final 5.5 done last fall.  I have an appointment with a GI doc next month to see what is causing that because the neurologist doesn't know why.  I have been told by acquantances that it could be caused by liver/renal dysfunction.  I have a normal carbohydrate deficient transferrin deficient test done but was told that neuromuscular illnesses can surpress that figure and it may actually be higher.  I do not drink and I am in my 30's. The sinus tissue that they removed in a sinus surgery showed lymphocytic and lymphoplastmocytic inflammation, and GI procedures done 3 yrs ago show chronic inflammation, severe duodentitis, gerd.  The neurologist mentioned possibly checking for amyloidosis, but has not mentioned it again.  Does any of this information lead you in any direction of what may be going on with me and causing the neuropathy/MG. If so, what tests would you run to try to find out what it is.

Thank you for your time in reading my long winded post and providing this forum.

[CCF Neuro[P] MD, RPS]

Dear Allison:

Sorry that your having multiple problems.  Usually multiple problems suggests a systemic disorder (as brought up by your neurologist with amyloidosis-a possibility by the way).  An isolated finding of anti-striated muscle antibodies is not MG.  The suggestion is one of an autoimmune type disease, that would also fit with your multiple systemic symptoms.  I would imagine that the usual things like B12 level, ANA, C3-4/C50, sedimentation rate, lupus antibodies, etc have been done and are normal. I might suggest a rheumatology visit as a second opinion might be helpful.  In addition, it might be helpful to run a paraneoplastic panel as these might reveal a source of your problems.  I am sorry that there are no easy explanations concerning difficult diseases, especially without an exam and having all the workup present.  I wish I was more of a help.

Sincerely,

CCF Neuro MD

[mabel]

Thank you for your quick response.  They have not tested any anti-striational antibodies on me yet.  They did a MG assay of binding, blocking and modulation antibodies, 2 of which came back positive. Based on that and a single fiber emg they diagnosed the MG. They haven't run a C3-4/C50 yet.  They have run and repeated the  paraneoplastic panels and they are normal as well as the lupus ones.  Thank you for your help.  I will ask the doctor about the test they didn't run.