[ucfsurfdave]

Hi all. MG since 1997 (age 19). Had a thymectomy at that time. Complete remission until 2007. In 2007 I had double vision and drooping eyelid. Went onto Mestinon and symptoms left in about a month. Last month around New Years, I had strept throat and the flu within a week. Also ran a marathon around the same time. I believe it was the two illnesses and the physical stress that has brought it back again. It started off slow with drooping eyeslid, now I have severe double vision and strange feelings in my arms and legs.

Anyone ever go into remission again or does it stay with you forever? Can I exercise (run) while I have symptoms? Does rest help? I am on Mestinon now but does not seem to help. Should I consider prednisone? Are the side effects too much and should I just live with the double vision? I have heard THC is an Acetylcholinesterase Inhibitor and have considered use. Anyone honestly have any success with THC for symptoms of double vision?

Thanks everyone.

[suev]

Hi Dave - - Welcome!

I think you know that MG does what it wants...when it wants. That having been said, you're probably right about the infection and marathon stresses combining to let the beast out of it's cage!

Anyway, I have never heard of THC helping double vision. And I would suspect that your first best option is Mestinon and total (as much as possible), boring rest and sleep for a couple of weeks at least. Maybe you'll get lucky and your body will reset. But it won't even think aout it if you continue to stress it with even normal activity.

RE: the pred - - it wouldn't be my first choice - but that's really up to you and your doc.

Good luck!

[Stellatum]

Hi, and welcome. The following is just how I understand it--there are some knowledgeable people here who will correct me if I'm wrong.

Mestinon works, as you know, by inhibiting acetylcholinesterase, the enzyme that breaks down acetylcholine. But there's only so much that Mestinon can help--not because it doesn't inhibit the enzyme enough, but because if your neuromuscular junctions are under attack, having acetylcholine hang around longer can only do so much. It allows your good receptors to do double duty, but it doesn't fix the bad ones.

TCH may be an acetylchlinesterase inhibitor like Mestinon, though I've never heard that. There's also one of those "natural supplements" that inhibts acetylcholinesterase (huperzine). But if Mestinon alone isn't enough, TCH and huperzine won't help. If Mestinon is doing its maximum, then more drugs that have the same function won't increase the benefit--and they might be dangerous, since too much acetylcholine in your system can cause a cholinergic crisis, which is life-threatening.

Hope that makes sense. I hope that the fact that you've been in remission twice means that you'll go into remission again--and soon! Besides MG, I have Graves' disease (autoimmune hyperthyroidism) and I've had a series of remissions, each one lasting longer than the last. I don't know if MG is like that, but for your sake, I hope so!

Abby

[ucfsurfdave]

Thank you both. I am so happy to have founds this board. It is nice to be able to talk to people who are so knowledgeable about this subject.

[nevadabound]

Welcome ucfsurfdave ,
this is a great site i just found it about a month ago great info and great feed back, myself mg 1973 age 14 -thymec 1975- but no remmisson for me been on mestnion since 1974, double vision is part of mg i still have problems with it especially if im at this key board to long but everyone is different

[sugrkiss]

For me, THC, either sharpens my awareness of the weakness, or makes me weaker. If I am strong and my meds are regular, I have no ill effects, but it doesn't help anything, and when I am weak I can't go near it. Hope this helps...
Jess

[AnnieB3]

Dave, Welcome. I'm sorry you have gone out of remission. I'm sorry to say that it does happen. No two people who have MG have the same history with MG.

Physical stress, overdoing it, infections, surgery, not enough sleep and so many other things can make MG worse.

You should talk to your neurologist about all of this too, including the exercise issue. The worse you get, the less you can exercise. Why? Because exercise can make you much worse if your MG is doing badly. It might even put you into a crisis a couple days later. MG has that odd "collective" effect after you do things. It may not show up until a couple days later.

There have been studies on the effects of tetrahydrocannabinol/THC (from marijuana) on acetylcholinesterase but not enough studies to put your life at risk by smoking it! I'm all for alternative medicine but smoking anything adversely effects the immune system.

http://www.ncbi.nlm.nih.gov/pubmed/693562

http://www.ncbi.nlm.nih.gov/pubmed/126214

Prednisone can be a dangerous drug, with a lot of side effects. You have to think about the long term problems with it, especially how damn hard it is to withdraw from. Are you willing to be on it for the rest of your life? Seriously, it's that hard to get off of. Research it, talk to people who have had it. I've known lupus patients who had to have pins put into their hands due to the bone demineralization from Pred. Only you can decide what you're willing to deal with. But if you got strep so easily, you also have to think about how easy it is to get infections while on immunotherapy.

In some MGers, double vision is a big deal and really has a big impact on their life. I don't know if I've just gotten used to it or what but I can deal on Mestinon alone. Again, talk to your neuro about all of this. You could try cold washcloths on your eyes or go see a neuro-ophthalmologist for suggestions.

There are no easy answers with MG. One of the best "treatments" you can use is alternating activity with rest. No, it's not fun but that's the reality of MG. If you push too hard, MG pushes back.

I hope you and your doc can figure out what to do. It would be great if we all could go into remission.

Annie