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- - To wvfox (https://www.neurotalk.org/myasthenia-gravis/188663-wvfox.html)

Quote:

Originally Posted by cait24 (Post 987150)

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

It started after I was up all night and could not sleep.....I'm pretty sure due to prednisone, I had never had neck weakness until a few weeks ago, it bothers me worse than anything. It has been warmer here lately. I bought a neck brace to hold my head up and I keep ice on it and especially at night.Again I thank you all so much!

I've had spells of horrible neck weakness. It is one of the most uncomfortable symptoms there is because you truly need to use your neck muscles for EVERYTHING. I've had summers where I was unable to work in the garden due to it, and it was #2 in my reasons of why I had to give up my career.

One thing about it, though, is that the neck weakness, at least in my case, tended to get worse for a few weeks and then return to baseline (which is weak but not AS weak). Hopefully yours will ease up for you soon.

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.

Lindsay, I am going to cut and paste your message in a new thread so it does not get lost. Hopefully some of our experienced members can help you through your fears.

kathie

Quote:

Originally Posted by Lindsaym (Post 987232)

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.

Quote:

Originally Posted by wvfox (Post 987283)

In addition to MG I am a long time diabetic. I have found the quality of care for both conditions to be similar. I think you have to learn about MG pretty much on your own. I wasn't given any instruction either. There seems to be relatively little concern until the patient either goes into a diabetic coma or has an MG crisis. Then everyone gets serious!

My advice is to do your utmost to learn about MG and work in close partnership with a good doctor to manage it. If your current doctor isn't interested there are others out there who are.

If any new or old members want a copy of Dr Howards book on MG just drop me a private message with your email address and I will email you a copy.
Mike