Hey guys- just wanted to give a little update

I'm 2 weeks away from infusions, and not doing too bad. I have been excersizing quite alot so that Is incouraging, although I am getting tired more fast.

My neurologist would like to preform a muscle biopsy to see if I have anything else going on. I am having very bad muscle twitches/spasms and I'm not sure what to do about them. More calcium, less prednisone? What do would you suggest? Also she wants to have me go on a clinical trial for a new medication that has been found to help- hopefully.


Yet I think I am on the road to being healthier but as I'm taking a semester off that is hurting me mentally. -need to get out.


Anyway- I am headed to bed. Late for me and I
Getting up to go to the gym at 6:30.



Hope you are all faring well.

Tyson, I'm glad you are doing relatively well, in spite of the fact that you are way too stubborn to live well with MG.

If you exercise a lot and drink water and don't replenish electrolytes, especially sodium, you can have a lot of twitching. This could be a "simple" case of electrolye/fluid imbalance. Actually, there's nothing simple about it. Hyponatremia, too little sodium, can kill you if it happens quickly. How about asking your primary doctor to run a metabolic panel when you are twitching. That's a lot more logical that cutting into you and putting you on a drug whose side effects haven't all been found out yet.

My point about electrolytes is that until you know what the status of your potassium, sodium, chloride, calcium, phosphorus and magnesium are, adding more can make you worse. Supplementing with calcium has been an "issue" lately, with some thinking it can buildup in the circulatory system/heart and cause even more problems. So talk to your primary doctor about this.

Do you know what drug she is talking about? I highly suggest you do research first before even considering it. If it's Monarsen, it's like Mestinon without all of the side effects and I believe it's only taken once a day. You have had a history of problems with drugs.

A muscle biopsy while you are immunosuppressed could be a problem. If she suspects any inflammatory problems, she could run some blood tests first.

I don't believe in slicing into a person unless absolutely necessary but that's just my opinion. There are other ways to find things out. You have to wonder sometimes if they pull tissue for their own selfish research reasons.

A biopsy does leave a scar. Not that you are so completely vain but it does last forever. And the pain of a biopsy is no small thing either.

Yes, it sucks to not be in school but that doesn't mean you aren't as valuable out of school as you are in it. School doesn't make you have value; you make the schooling have value. Does Stephen Hawking have no value because he can hardly do anything anymore? Do I have no value because I can't work anymore?

Trust your instincts on all of this. And try not to be so driven when it comes to exercise. It is sounding a bit like an obsession, one that could put you back into the ER! Take care.

Annie