NEUROLOGY EXPERT FORUM
AXIAL (Torso) WEAKNESS WITH MG.

AXIAL (Torso) WEAKNESS WITH MG.


  Brief description of my diagnosis;
  I have posted a few questions on the subject of MG and was diagnosised with MG in November.  I am now on 60mg X 4 Mestinon per day and recently started Prednisone last week.  I am currently on 15mg per day and slowly increasing until I reach 60mg per day.  I also just had a CT Scan of the thymus yesterday and am waiting results to be sent to my neurologist.
  I was dx'd the day of my visit by my walk, speech, strength and the ability for the neurologist to still bring on a ptosis with my left lid even after having 9 ptosis surgeries in 93-95.  The orginal eye surgery was to correct blephartis and orbitopathy from Graves disease.  On recovery my lid would either ptosis during recovery or shortly after.  He suspected MG but I could not get any of my last 3 PCP's to test me for MG.  All treated me like my symptoms were caused from stress and depression and all firmly told me that I could not have MG because it was to rare.  I have tested negative Antigen and am still having other tests done.  I am also waiting for a repeat of the antigen that was done prior to starting my prednisone last week. I was told that the tenisilon test may not give accurate results because of the corrections to my eyes.  The mestinon was used to confirm the dx rather than the tenisilon.
  I was told by one of your doctors that the axil weakness I experience could infact be causing some of the aches and pains I experience when I sit to long, such as, at the computer.  The mestinon seems to have greatly reduced these incidents and has really given me back the neck strength.  I was suffering from very heavy head and would find myself resting my head on the monitor.  When I would get this weak I would start having bad neck and shoulder pain.  I would catch myself being slumped over and then my ribs and under my sternum would start to ache.  Working at a desk job was keeping me in constant pain and aches.  I had to quit work in June because of weakness and abdominal/rib pains.
  Questions:
  I am concerned because I recently saw that I have developed little broken spider veins all along the ribs under the breasts.  I still have tender parts to the touch on my ribs more lateral of the ribs and directly under the breasts.  Could these broken veins be caused by a weak diaphragm or the costal muscles?  Could this be caused by something else other than the MG?
  Can a Thyoma or any thymus problems cause discomfort and aches in the sternum area?  I sometimes get sharp pains that shoot under the sternum area around my heart. I did the pulmonary function test and and was told it was not good and that I had about 80% VFC, possible lung disease or problems.  These pains seem to occur more when I am very weak and am having a difficult time breathing.  Could these pains be attributed to the lung problems and/or a thyoma or thymus problems?
  I have a wonderful neurologist that has a few MG patients and is very open and honest with me in respect to questions if he can not answer them.  These are not something he could answer.  Depending on the results from my CT Scan I will be seeing a MG specialist at UCSF if a possible thymectomy should be considered, but that may be months away.
  Thank you so much for this wonderful forum and your care and concerns for patients.
  Sincerely,
  Sharon T.
  sha_tur***@****
  "X" Fitness Trainer
===========================================================================
Dear Sharon:
Axial and neck weakness ("dropped head"), and respiratory muscle weakness are a frequent manifestations of generalized myasthenia gravis (MG). MG is reliably and diagnosed with antibody tests (about 90% sensitive for genl. MG) and/or single-fiber EMG (about 95% sensitivity for genl. MG); a routine EMG with repetitive stimulation helps exclude other diagnoses, and is moderately sensitive (70-80%) for diagnosing generalized MG. The tensilon test, and especially a therapeutic response to mestinon, can be quite unreliable.
It is standard practice to look for a thymoma in cases with generalized MG. It is also the opinion of most neuromuscular experts that the course of generalized MG improves after a thymectomy in the majority of cases (especially ones WITHOUT a thymoma), although this has never been proven.
The pain that you suffer could be a from poor posture. It is unlikely to be from MG or from a possible thymoma. I do not think the bursting vein is of significance.
Good luck!




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