He said we were going to talk tomorrow. I already sent him an email telling him all my troubles with the mestinon. I am just exhausted with it. Feel like I have run a long time.
He was very helpful but now he is leaving his post and seems to be more in a hurry now. He said the next step would be IVIG. Ugh. I cannot do steroids.

I just read your posts about the Mestinon. Sometimes you have to start at a lower dose and build up to a higher dose as your body tolerates it. Maybe you could ask your doctor if you can lower the dose.There are times when I only take 30mg (half a tablet) and others when I take 120mg. Sometimes I need it every 2-3 hours and sometimes I only take it 3 times a day. If you stay on it and it works for you, you will learn to tell what you need. It is good that you are trying to talk with the doctor about it all.

Do you have a Muscular Dystrophy Clinic anywhere in your state? If you do, it might be a good idea to contact them. Myasthenia Gravis falls under there services. That way someone who knows a little more about Myasthenia Gravis could coordinate your treatment and you wouldn't have to reinvent the wheel every time a new doctor cycles through your town.

Here's a link to the MDA website and you can search for clinics in your area.
http://www.mdausa.org/clinics/

I hope things are getting better.
Gabrielle

I had tried it - building up - the first time I tried it - and there was no effect.
This time, this doctor told me just to take it 60 60 60 and see how it went. It was miserable as my symptoms has progressed this time. I was not having problems swallowing last time and now I am - so it made it all worse with the increased saliva. The test was would it make it better.
What I find very strange is that since I stopped the mestinon is that I got a twitch under my eye. It happened Sunday and lasted 5 hours. It happened again Wednesday and lasted 6 hours. Then it happened Friday and well, so far into Saturday, it has not stopped. 30 hours so far. Irritating and aching my face. On the mestion I got eyelid twitches and leg ones. Crazy.

Ok, so I went for the IVIG. After two doses, they said my white count plummeted "like a really old person" and they would hold off and see what would happen before they gave me more. By the end of that day, I was almost dead. I had a 103.5 fever, an adrenal crisis and aspetic meningitis. I kept telling them how to treat the adrenal crisis but they kept lowballing me on the hydrocortisone which is a very very dangerous thing for me with a fever that high and no freaking adrenal glands. I asked for 100mg, they gave me 5mg kind of thing (not joking!). Finally 5 hours later I got 80mg and after a really bad night, I pulled through with a lot of pain meds and anti-emetics.
They told me no more IVIG... gee...
So now I have to find yet another option. They did a lot of testing while I was in though so my swallowing difficulty is now documented and I got a lot of occupational therapy. I escaped the walker as it seems my weakness seems more upper than lower but my legs still are not great.

Well, I guess my option now is to... do nothing. So, since any other medication would have too many side effects in the doc's opinion - I am stuck living like this. I may progress to get worse, or simply resolve and magically get better (wooee!) but I have to say, I am not thrilled at life like this. Back in limbo-land with arms of crud, choking and ... but oh well, they do not have to live my life.
He explained that it was just like before, when they did not have treatments for MG. I feel like such a throwback. Is anyone else out there completely untreated?

Is it possible they ran the infusion too fast? What type of I.V.I.g did they use?

Hi rumpled,
sounds like things are pretty bad at the moment!!
Im sure you've said it before, but humor me(I've got the flu and my MG is playing up!!which usually means my brain goes on holiday!!!!!) why can't you take immune supressants?
It must be very frustrating being in this position, wish I had something good to tell you, but keep comming here and talking, getting it all of your chest helps(well I know it helps me),
take care
redtail

It was Carimune 6%. They run IVIG all the time (two other people were getting it the same time as me, inpatient) so they ran it nice and slow and tested me. The day I had the reaction, I actually did not even have any - my tests had showed that my WBC had dropped already so they were giving me a day off but my body did not recover, instead tanked later in the day. It was my lack of adrenal glands, they think, that caused the reaction to be more severe than usual.

I cannot take steroids due to my history of cushing's - it will just give me cushing's back right away and I have to be able to take various doses of steroids to control my life (literally) and so to take high doses would take that away. Plus my body is already severely damaged by the steroids my body made and they do not want to add to that. The other drugs, they were worried about the side effects being more serious than the benefits.

Hi-I found your post online and even though it's from 2007, I was wondering how the discovery process is going. Have you been properly diagnoses yet?

Based on the few things you mentioned it doesn't exactly sound like you have Myasthenia Gravis (MG). I have MG and though we have very similar symptoms the fact that the Mestinon was making you sick may be an indicator that your body does not need what it is supplementing. I currently take 180mg of Mestinon 4 x's per day and don't have any side effects.

When I read your biopsy results it sounds more like you have a Mitochondrial disease. Do a goodle search on it and see if it sounds like what you've been experiencing...

I hope you've found what you need by now, but your post touched me so I wanted to see how you're doing.

Take Care,
m