Living With Two Rare Diseases

12 years ago I was diagnosed with MG. I couldn't swallow, had a very hard time talking, was fatigued, weak, and had little or no control of my tongue. Anytime I tried to swallow at least soup or water, it came out of my nose.

After seeing three doctors and eliminating throat problems or possible stroke, I saw a neurologist who tested me extensively and the results of all the tests were MG.

A persistent side effect

He put me on Mestinon and it helped me within about 45 minutes, but the cramping was a big problem. I am on a statin which also can cause cramping but it was no problem until I took Mestinon. I started out on three 60 mg Mestinon daily along with Prednisone but quickly had to stop the Prednisone. I stayed on the three Mestinon for some months but the cramping was severe.

I cut back to two a day, then one a day but the only way I managed to cut the cramps down to a tolerable level was to cut all the way back to only half a pill a day. It seems to work just fine and still manages to give me some relief from the fatigue and weakness.

An additional rare diagnosis

I do have a problem though that's different from most of us who have MG. When first diagnosed with MG my doctor wanted a second opinion so he sent me to a doctor who specializes in MG. He tested me extensively and agreed with my other doctor but he also diagnosed me with Charcot Marie Tooth disease.

I'm told that to have both MG and CMT is extremally rare, It has taken a toll on me. I was able to walk with effort but I didn't need a cane or walker. In the last two years, I have become steadily worse and I have to use a walker now. I can walk without it but for only about 30 steps. I don't know what's in the future. I hope I don't end up in a wheelchair. I do try to take walks with my walker, hoping to stave off the wheelchair scenario.

My MG symptoms

I don't have drooping eyes but my wife says when I am really fatigued, one eye does droop a little. I often have flareups and they are bad, everything, weakness, and fatigue are much worse and all I can do is rest.

Hard to accept these new limitations

It's impossible to stay in any kind of shape when I can only exercise lightly and not on a regular basis. I am 85 years old, and will be 86 in a few months, so I suppose my age isn't helping matters. I have to say though, that without MG and CMT, I'm convinced I would be in very good physical condition. I always kept myself that way and if not for this problem, I would still be in good shape.

Thankful for my spouse

I am told by everyone that I don't look my age. Most think I am in my 60s. My wife and I are the same age and on our next anniversary, New Year's Eve, we will be married 67 years. My wife is the same as me, people think we are in our 60s. She has fibromyalgia but it it has not done much to her appearance, she looks great.

I think we keep each other young. Though lately, neither of us feel very young anymore.

I am not a writer so this is the best I can do,
Patrick Stagg