Only clinical symptoms of MG

[cindylee257]

I am so confused. I have had an auto immune disease(inflammatory arthritis) for several years now.....with difficulty taking methotrexate or Enbrel. Three months ago I developed new symptoms......drooping eyelid, voice fades to whisper after about 5 minutes, crooked smile, and choking and coughing when eating. I also have had trouble holding my head up for several years now.....and leg and arm muscles have wasted. My rheumatologist looked at me immediately and said I had MG...but I needed to see neurologist. Five minutes after see him....he also said MG. Did arm EMG which show abnormal results...so he proceeds to put me on Mestinon where I had marked improvements. I asked him about the surgery.....he then sends me to a specialist in Augusta.....where this doctor proceeds to do more EMGs and single fiber test. All of those test were normal...and the antibody test was normal.
He talks with my doctor and says he is clueless. He can't say that I have MG because all the tests come back normal....except for my neurologists EMG and the fact that I get so much better with the Mestinon. Just in case you are wondering...I quit taking the Mestinon 2 days prior to seeing the specialist.
So......my doctor says...the test say no MG.....but he is keeping me on the Mestinon and scheduling swallowing test for me next week. My voice is getting worse.....the muscles in my neck actually hurt when I try to speak.....and the choking is still a problem. I have been on soup diet for the last 3 weeks now because I choke so bad.
OK....here is my question. Could the swallowing test show anything that would confirm the MG diagnosis.....and just because all the tests were normal.....but the symptoms are pretty obvious....would you still stick with an MG diagnosis? Currently I am on 60 mg of mestinon twice a day.
Thanks for your help....
Cindylee

[sandy547]

ALL YOUR SYMPTOMS POINT TO MG. IVE HAD IT FOR OVER 20 YEARS. IM TAKING MESTINON TIMESPAN 180 MG. 3X DAY.

[cat1203]

Did he do a test where he injected a med in your vein and you felt great for about 20 seconds.  That is a possitive test also you know i have ms and mg but when i couldn't swallow my throat seems to lock into place and it hurts like hell until it unlocks.  i found out i have a gastric ulcer too from the mestinon and predisone and i am on a med for ulcers it is a liquid and taste terrible but i can swallow now.  it was my ulcer doing that.  my eye comes and goes i can't take the mestinon it affected my heart i receive gamma gobulin once a month because the mestinon can make you become very congested.  i developed pneumonia.  By the way it used to be called grave's disease.  why they changed it i know not.  are your arms and legs weak and give out another clue.  

[donnawylie]

The introvenous edrophonium chloride (also called Tensilon) diagnostic test would confirm a diagnosis of MG, which is what it sounds like you have. It's important to get a sound diagnosis.

I have done well using lots of organically grown fruits and vegetables in smoothies, easier to get down if you have swallowing or chewing difficulty.High quality diet, fish oil, and avoidence of alcohol, nicotine, animal products, processed foods. Research on the net will give you lots to go on. Stress-free periods give your system a chance to recover.    Blessings, Donna Wylie

[donnawylie]

In addition to Mestinon, Prednisone is added and can make a big difference.  Donnawylie