Glad to help, Kat.

MG rarely stays as ocular. And what you describe (fatigable weakness) sounds more like generalized MG. At your age of 33, Pred is a pretty strong drug to be giving, especially with "ocular" MG! Mestinon can help with ptosis, but not always. Ptosis for some people, even on Pred, doesn't go away completely. The reasoning behind giving Pred right away doesn't often pan out. Instead of one disease/MG, patients end up with all sorts of secondary problems.

I never cease to be amazed at how many people with MG have another AI. One would think one would be enough! Quite a few people here have had Grave's. And controlling that situation, given that variables are different for everyone, can be difficult. That will affect MG.

There should be docs in MDA clinics where they have free appts. for MG patients. Often it is once a week. www.mdausa.org

Having an expert diagnose MG is the best. But you can have a "regular" neuro do ongoing care, if they are interested in MG and are easy to work with. The diagnosis and treatment plan are what experts are best at. And at explaining this stupid disease!

Mestinon doesn't mask symptoms! Not in any true sense. The drug kicks in after about 30 minutes. Two hours after that, it wears off. One can easily tell if the drug is helping after that! If someone is stronger after taking it and weaker off of it, well, there's the proof that Mestinon is helping. Yes, some people take too much and have a cholinergic crisis (too much acetylcholine instead of not enough). A MG crisis is when we don't have enough acetylcholine.

So, one can easily tell what condition MG is in when that drug wears off. Also, according to one MG expert, there is a difference between the brand (Valeant) and the generic brands. He didn't want me having the generic, mainly because I don't have any other treatment.

I have known people who are on other drugs, IVIG, etc. They still use Mestinon for when they are doing activities. Again, it's a supply/demand situation. And Mestinon helps bridge the gap, until drugs such as Imuran or Cellcept kick in.

There's a lot to know about MG. Some drugs can make MG worse, which the MGFA site has listed.

That "dry" Vegas heat won't be any easier than a "humid" Florida heat! Be careful outside at all times. Nothing like the heat to push a patient into the hospital. Hydrate a lot and stay cool!!!


Annie

Thanks for the MDA link. Is MG considered muscular/movement disorder? Is MG treated by neuros simply because they deal with synaptic junction and neurotransmitter function - not because it deals with the brain?

I currently live without A/C in San Diego (and not near the coast with the nice breezes!), so I'm actually looking forward to Las Vegas where at least all the inside areas (and my car) are air conditioned. I've had heat intolerance for many years, partially thanks to my thyroid issues, so I am used to being careful

MG is a neuromuscular disease, since it affects the neuromuscular junction. Any thing having to do with nerves/CNS/muscles is dealt with by neuros. Rheumatologists also handle some diseases, such as polymyositis due to the inflammatory component. MG has also recently been implicated in having an inflammatory process (HGMB1).

Wow. No way could I live without AC due to MG! Glad you're aware of the affect on the body.

This is the best site out there on neuromuscular diseases.

Myasthenic Syndromes

Annie