Extreme fatigue
 

I was diagnosed with MG a little over three years ago .... My symptoms have been relatively mild for the first 2 years ...Drooping eyelid , speech problems and some minor breathing and swallowing problems My neuro put me on 60Mg of Mestinon ..four times a day but I was doing well on just three .
However, in the past six months i've found that stress now has strong effect on my well being ...Causes speech problems and fatigue ...even minor stress now brings on symptoms ... I've bumped back up to 4 Mestinon /day .
Recently my problems with fatigue have really slowed me ...Raking leaves for ten minutes causes me to almost drag myself back inside , head drooping and very out of breath .
My neuro has recommended prednisone and maybe accompanying cellcept .. I read the threads in here about prednisone and the side effects and I've told him ..no ..not yet ..I know everyone's symptoms are different , but this fatigue is getting me . Can't even walk halfway across a Mall.
Looking for those with similar fatigue problems and any reccomendations
Jack

Had the same sort of thing happen to me this year. Had a thymoma 7 years ago and my symptoms have been mild up until this year only on Mestinon but it was not working. The symptoms have become much worse but the fatigue was overwhelming. I was put on Prednisone a month ago. It has helped the symptoms somewhat but it really helped the fatigue. I call it my necessary evil.I was so scared to take Prednisone because of the side affects. I was put on a low dose 15mg a day and have not had horrible side affects yet. I have had some agitation, hot flashes and palpitations and some minor muscle aches so far but I do know the longer I take it the worse it may get but I also know many who will tell you it is what keeps them going.. Right now I can function closer to normal. Hope you find your magic potion to get you back on track. remeber horror stories are the ones most likely to be posted online.

Prednisone is very hard on your body. For me, I was diagnosed in 1981, had thymectomy then started Prednisone and Mestinon immediately. After 2 years and a change in doctors, they found that it actually made my weakness worse. I know everyone rolls their eyes when I say this, but I found nutritional supplements can help. Have you tried Choline and inositol? I take it daily after my 640 mg of Mestinon and 200mg of Imuran was not managing my weakness. Stress is hard - a fight with my husband puts me in bed for at least a day. A major incident (car accident, etc.) will incapacitate me for a week or more. I'm a type A personality so just telling me to control my stress doesn't work. At times, a grocery store trip is all I can do in a day. If you're like me, anything that may help is worth trying.

Thanks denik258 and JennieM for your comments and recommendations ...
I'll talk to my neuro about Choline and Inositol that Jennie recommended ...
Maybe starting low doses of Prednisone may help alleviate this fatigue .
Been occasionally taking 1000mg of vitamin D3 , but I've had no noticable improvement in reducing fatigue .

Jack, I'm sorry you're having more problems. I think it's a good idea to see your primary doctor to have them order a few tests, like thyroid, B12, vitamin D (even though you're taking it), etc.

For the sake of that conversation, you should probably keep a journal for a few days. Are you weak or sleepy tired? Fatigue is one of those words in medicine that is not specific enough! It's used for a lot of conditions.

Endocrine issues can make you more tired and more weak. So can a B12 deficiency. That's why seeing an internist is the best thing to do. They "generalize" instead of "specialize" and can try to help you figure out if it's just MG or something else making MG worse.

As far as the drugs go, really do your research on them! The problem with taking more than one drug at a time is that you don't know which one is making you better - or worse. And then it's also hard to tell which one is causing side effects. Even with supplements, it's best to try one at a time.

If you do have a vitamin D deficiency, it would cause things like neuromuscular pain, hair falling out, etc. And if you do have one, you need to take it daily and have the dose directed by your primary doctor. 1000 IU's may not be enough. I take nearly 5000 daily and my Vit. D is barely above normal.

You'd be amazed at how common a B12 deficiency is. Please get that level checked. If it's on the low end of the range, you should probably supplement with sublingual methylcobalamin (B12). We need B12 to make acetylcholine. So if you're running low on that, it affects both the muscle weakness and alertness.

I hope you'll figure out what's best for you.

Annie