Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Advice

bear57
bear57
I have been feeling really bad lately I am not sure if it is the heat or the MG. My chest feels like I am straining to breath my legs felt like rubber today and I feel like I get tired when I speak to much, there is more but I know that you all know what I am saying. My question is I am going for my second opinion in about 3 weeks and I guess I want to look as bad as I can so there is no question and he don't look at me like an idiot. Or should I call the Nuero I have now tomorrow and see what he says I like him but he usally just steps the medicine up and tells me the test look normal but I do have Ocular MG. I read alot of what you all post about the doctors and how they just go thru the steps. I want to feel so bad when I go in there I have to drag myself in the door so there is no question I have a problem. I guess one of the things I do think dailey now as it seems to me to be getting different than just the ocular is it may be generalizing and what would be next. Thanks for any advice anyone might have.
annkemp
annkemp
Oh I am so sorry.
You mentioned your neuro ups your meds? What does he up....
mestinon?
Are you taking mestinon and are you taking it around the clock?When I was like you are I was taking 90 every 4 hours and through the night.
Have you been real active lately? If your neuro ups your mestinon that may be what you need. I was taking up to 90 every 3-4 hours.
Hopefully you will rest and feel better soon. You should let your neuro know asap of your current symtoms.
The heat will make us worse. A physical fact.
My treatment for generalized MG is mestinon, cellcept, and predisone. I had plasmapherisis when I was in the hospital.Rest up my friend.
Ann
bear57
bear57
Guess I should have mentioned I am on Predinzone 10mg twice dailey and Mestionon 90mg 3 times a day when I do call him he usally takes one or the other up or down I never know which and I think he is guessing And no these last few weeks I have not been that active just going to work and coming home maybe a few things around the house but the heat and humidity has kept me in.
mgadvocate
mgadvocate
Bear,
I would suggest you get a video camera and record you at your worst. I would much rather see you get treatment now and not allow your breathing get worse

You may also find your current MD more responsive if he sees/hears how your condition is getting worse. If he doesn't you have your answer about the need for finding another MD. Do keep the consult appointment.

Hope you can get some help right away.

Bruce
Marcela7
Marcela7
Bear, I agree with Bruce you should look for help before is too late. The heat truly affect us. A video sounds perfect, you don't need to suffer any longer.

Be safe!

Marcela
adamrach
adamrach
Heat really does affect us very badly. I would call the neuro and just check in with him and let him know what is going on. I often have to up my meds in the summer to make it through when it cools down I back down on them.
bear57
bear57
OK called the neuro he was going to set me up with the same lung doctor that looked at my last results and said they were normal I am not going to waste my time going back to him. I have an appointment with my second opinion Neuro doctor the 24th and the lung thing the 27th. So I am not going to the lung doctor and see what this new Neuro says. I am going to my family doctor Monday and see if he won't give me something to relax stress is part of my make up. Like all of you I am worn out the stress and feeling like your just falling apart. I don't know how you women with children do it my hat is off to you all for sure and GOD bless you. Thank you all for your suggestions I am going now to my wifes sisters house next door take a few beers and get in the pool nobody is there my wife and her sister are in Gatlinburg and nobody there. And we live in the country I love it out here. I don't say things like this often wasn't raised that way but I am very glad I signed on here I couldn't think of a better bunch of people you all are so kind. How some of you that have had it so long have done it I don't know. Well going to ice me a few down and go now just really tired.And if your wondering it has cooled off here and is raining who needs the sun when you have this it is a curse. Thanks again......
bweeds
bweeds
Please don't drink and get in the pool with MG and no one home; please don't get in the pool with MG and no one home, beer or no beer. b.
bear57
bear57
Well got ready to go over there and heard thunder guess someone heard you. Guess I will go to bed got to go and work anyway in the morning. Oh well maybe tomorrow will be a better day you have a good evening.
txkiki53
txkiki53
whew.......bear you scared me also when you said you were going to be in the pool by yourself, Yep... God heard B's pleasssss..

rest, take care,
Annette