Originally Posted by Swallow123

There seem to be a great deal of autoimmune disorders on my mom's side of the family. 2 aunts (and possibly an uncle) have MG and my mom has Lupus. I ended up with Graves Disease and MG.

After an SFEMG test in 2001, the neurologist decided I had Occular MG and gave me Mestinon. My blood test turned up negative.

The neuro didn't say much, perhaps because she was behind and perhaps because she was ill herself. Anyways, I didn't think anything of it and got my future scripts from my GP. My family isn't that close - especially when it comes to discussing diseases.

A few years later, I thought it might be a good idea to visit the same neuro for a check up, because I was experiencing some weakness in my extremities. Neuro said everything was fine and to increase the Mestinon as needed.

For about 5 years in all, I didn't realize it, but I had been making allowances for things like the long walks I used to take with my husband and neighbour in the evenings and choosing hamburger over steak - because filet was too tough.

In 2006, I started to experience breathing problems and woke up in neuro ICU of the local teaching hospital. Dr's did a course of plasmapharesis and finally removed the breathing tubes and IV's about 5 days later. According to the Endocrinologist, my thyroid levels were dangerously low.

YEARS LATER, I would find out that the Magnesium I was taking for muscle spasms was binding to the synthroid and weakening its efficacy. That, and the MG saw an opportunity to play havoc with my body. To this day, my neuro still believes that I quit taking my synthroid(???).

Anyways, for about 2 yrs, I was in that "Maybe she does / Maybe she doesn't" category that many of us have had to endure. Most times, I was treated with IVIG, Solumedrol, etc. FINALLY, after a Tensilon test, I got re-diagnosed!

Since I don't present in a text book manner, I was given a T/F psychological test that showed I also have CONVERSION DISORDER. Apparently, if you admit that you were sexually abused as a child - your "inner child" can manifest physical disorders to cover up for mental illness.

I was even told I had "drug seeking tendencies" and that I go for the "big guns" instead of a tylenol.

This was brought up, when I went to the ER for burning pain and swelling in my hands and fingers. Try to get ahold of any medical person on a Friday afternoon! None of the drugs I had at home were doing the trick - hence the "big guns" (Percocet). Later, I found out that I have osteoarthritis in my wrists and, were it not for my rheumatologist sending me for a bone scan, I'd be even sicker (mentally) than they first thought!

In the meantime, for MG I'm taking Mestinon 60mg x 3, Mestinon 180SR at night, 200mg Imuran & Prednisone (15mg alternating to 5mg every other day). I take a whole host of other drugs, as well.

As long as I take things easy and rest before a planned day out, I'm okay. The stress part can be tough to handle, but I seem to manage okay. It's only when I overdo it that I get into trouble.

My neuro now says that if I have trouble swallowing, I should go her hosp right away. Yeah - Like that'll EVER happen!

Sorry for the long winded story
Swallow123

Originally Posted by Royce

I understand what you are going through.
My (several specialists) Dr's have made me feel like I was loosing my mind. they need to realize that pt's know their bodies best and to listen to them. I was also told there was nothing wrong with me, advised I may be depressed, chronic fatigue syndrome and fibromyalgia were among some of the wrong Dx. Finally after 2 1/2 years I went to a Neuro again for the second time. But this time I went to a teaching hospital. They did a full neuro exam and said one of my thoughts, poss MG ( I have also been thinking MS or ALS). I went for a EMG and SFEMG both came back abnormal and still waiting for AChR and MUSK to come back. What an exhausting journey. And they say stay away from stress. they are the cause of it!! I hope your journey becomes easier and you can find a Dr who really cares and will listen to your concerns. Good luck to you.
Royce