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

[stefhut]

Ten  percent of MG sufferers do not test postive for antibodies or other known origins and I suspect that there may be other issues that lead to MG that are still unknown.  I am having a swallowing test too because it helps identify where things get stuck and can lead to a practical solution for swallowing problems (whether you have MG or a cranial nerve issue) and that is treating your misfunctioning palate through drug injections or surgery to adhere to the back of your throat if that is where the problem is.  Find out from your doctor.

[cindylee632]

Thank you ALL for you most helpful answers and suggestions. I am still on the Mestinon...and it helps my eye and mouth drooping and my vocal chord issues. If I don't take it.....all the symptoms immediately come back.......but still because of normal EMG....some are thinking its still not clear diagnosis. Now they are checking me again for MS. So I had brain scan a month ago...will see the results on Monday with doc. Lord knows what it will show. The reason why he did this scan is because I still have neurological symptoms that are not indicative of MG. Maybe I could have both?

Wasn't there someone who answered this post who had both? I was diagnosed in 94 with MS.....then docs began to question the formation of lesions on the brain. So they ruled out MS.......actually Mayo ruled it out...but not 100 percent. They wanted to do brain MRI there.....but I did not have money to have them done again. They said their machines would be able to pick up SO much more than the machine that had been used on me before.

Anyway....thanks again for your kind and compassionate responses.....I'll keep you posted on what the doc says on monday....and just continue to take the mestinon. I'm used to living in the unknown.....so I'm only inquisitive.....not frantic or demanding to get an sure fire answer of any king. Just would sure help with the treatment I receive.

Thanks again..
Cindy

[uk2]

Hi i am in the process of going to see a neuromuscular consultant who deals in MG as i have simular sx to you except the drooping eyelid there is a great forum for american/austrailians and europe/uk for mG sufferer MGA its called. I have seen on this forum that even when all sx indicate MG that it still does not show up in the blood tests and can take a while for this to show up but in others it does show eventually and the neuro seems to be certain its MG.

I hope the swallow test shows something and that you can go back on the mestinon, there are other treatments they can try and once they get the drugs right people seem to get there life back again.

sam

[uk2]

I have fibromyalgia and suspect MG so maybe you have fibro and MG i know its common to have more then one autoimmune disorders but if you had lesions in a previous mRI i would think it is MS but then then the dropping eye etc would not be indicative of mS and if it was as MS varies it would not respond to mestinon as it is caused by lesions and not what MG is caused by its the nerve connections or receptors from nerve to muscle if i'm correct. Keep us posted.

sam

[sandriana]

Hi,  Have you tried glyconutrients?  My son had a serious autoimmune disorder which the medical profs could only treat with steroids-so I did a lot of research and found glyconutrients help your cells get back to communicating properly with each other(in autoimmune disorders your cells are mixed up and attacking themselves).  I found a company that has the best nutrition in the world and the nutrients that give your body what it needs to heal itself.  Let me know if you think this makes sense!  Take care, Sandy