Originally Posted by cait24

How hot is it where you are? And did your sudden exacerbation of weakness follow an increase in temperature? That would be typical with MG. Some of us are more affected by the heat than others. Nerves communicate better with muscles in cold temperatures. I start feeling the effects around 70 degrees, by 90 degrees I am barely functional.

If your symptoms followed an increase in temperature here are recommendation:
1. you have to get cool. Turn on the air conditioners, fans etc. Stay out of the heat and sun, it will only make you worse. For me it is especially important to stay cool at night so I can breath and sleep so I turn the air to 72 degrees at night.

2. If specific muscle groups are weak, alternate ice packs on them to see if it helps. For me this is always the thigh muscles.

3. reduce activity, rest, rest and more rest. It can take days or a week or more to recover from an exaccerbation of weakness.

4. Stay away from any heat, take lukewarm or cold showers. DO not fold hot laundry, Wash dishes in warm water or cook over a hot stove.

Let us know what symptoms are the worse. We may have more sugestions.

kathie

Originally Posted by Lindsaym

I am newly diagnosed and am soooo confused and mostly scared. I am so afraid of it getting worse. I am not real confident in my neuro right now, he is not the one that made the diagnosis, and actually in my opinion missed the signs (double vision, weakness, ptosis, positive ncs - which he diagnosed as peripheral neuropathy) because I had a negative antibodies test. I was diagnosed by a neuro opthomalogist. He says he knows MG, but he hasn't told me many of the warnings or medicines to avoid that I find online. He also initially also left me on a muscle relaxer that he prescribed for the nerves.

I am currently waiting to get into an MG doctor at the university where I live. My appt with this is not until the end of June. I talked to my neuro on Friday and he said that I needed to come back in this week probably to discuss other treatments that maybe Mestinon alone isn't doing the trick.

I am currently taking the ER Mestinon 2 x a day and I take the short acting as needed for breakthrough, usually around 10 and 3.

Originally Posted by wvfox

I can truely say I know what you mean, and it sucks! I have seen three neuros since being dx and not the first one gave me a single phamplet or paper about the illness. It's almost like you have to dx yourself then tell them what to prescribe. You have found a good place here though, these people have helped me so much in 1 week. Blessed to have found this site.