Myasthenia Gravis Support Group

I think you are speaking of the Achr binding, blocking and modulating tests. On my first test the binding was positive and then 2 months later it was slightly negative. My neuro says they do fluctuate especially if you have other autoimmune diseases. I thought I was off the hook after the second one, but now I'm collapsing all over the place and on mestinon, which helps a little. My neuro is sending me to Duke for the single fiber EMG as they are the number one place for MG in the nation. I also have symptoms that overlap, but I do have a number of diseases.

It is my understanding that once you start a drug like cellcept your blood levels will decrease because that is what the cellcept is supposed to do- suppress the antibodies. But it is finding the correct dose and combinations of drugs to help. They should have done plasmapheresis and mestinon prior to cellcept.

It sounds like they ran an Antibodies Test, When my husbanmd had his last MG crisis his NO,s were 6.7 and 6.9. They started him on Plasma exchange every other day ,that's to get rid of the old antibodies and replace with new ons, maybe you can call ur Dr amd tell them you want a copy of all ur test and keep them where u can get to them to compare whith other test , because from expericence you will probably get a lot more test and they will vary,I always had to keep up with results and make note books and copies so if we had any doubts 0rquestions o had those. To fall back on, I lopst my husband after a S year batytle with this disease he was 69, I don't know everything but we spent the last 5 yrs in and out of hospitals and I learned more then I wanted to knowM I was very surprised when I came to this site and found so many people being diagnosed with MG, Good luck with this and their are a lot of people here that will do their best to try to help u. KAt

i was diagnosed as mg even though all tests were neg. i started on mestinon and double vision disappeared very quickly so dr said that confirms diagnosis. i agree that it is all so confusing and it is sometimes trial and error. keep chin up and enjoy what ever good things happen today-and we occasionally have to work abit harder to find something. i really need to be outside in the shade of course but fresh air does wonders for me!!

I started on pyridostigmine (that is generic for mestinon). I take 120mg 4x a day. I take 2000mg of cellcept a day. It's hard to tell if all of it is working since I'm on steroids,,which I hate with a passion. Because of it, I have drug induced diabetes,,something else to deal with. They gave me prednisone for the last crisis because my cellcept hadn't kicked in good yet so the steroids are supposed to suffice till it does kick in. But now it'll take a while to taper me off and I get to take diabetic meds now. I still get weak at the end of the day, my eyes still droop and I still get double and blurred vision. I still have serious respiratory distress when I do too much. When I was hospitalized, I had IVIG but only 2 of the 5 doses as it caused me to have aseptic meningitis. I think it's a good idea about asking for my test results..I have some of them..it's just the rest are scattered everywhere. I have 2 different neuro offices that tested me, one has 8 doctors that have seen me. I have alot of other doctors and records everywhere cause I have a long list of disease/conditions including other autoimmune problems. I'm getting very confused and I should ask more questions. Neuros are a bit cocky and tend to be very blunt and to the point,,sometimes a good thing,,sometimes bad. They sometimes intimidate and you just skip the questions. They are supposed to know best, afterall.lol Another problem is they seem to work against each other in their own office. My regular neuro in that office was out of town during my crisis so one of his associates prescribed the prednisone,,my reg neuro was not a happy camper when he returned and found that out. Steroids are his last option and I now know why. I don't know if it was a MUSK (I think that's what you call it) or the antibody test,,is that the same as Achr? I don't know if that was what it is either...sorry I sound really dumb to all this. I was diagnosed this past december and spiraling down since. I feel like I'm cramming for a test to learn this stuff.
Thanks red for the info, I wish I could go to Duke too. I've had the single fiber emg and all looked good. We both have alot going on,,I'd like to talk more to you sometime.
robbin, I thought that about the cellcept too,,that's why I'm so confused.
kat, I'm sooo sorry about your husband. Do you mind me asking what exactly was the problem..was it respiratory?
xmas,,I'm sorry for your diagnosis but happy your mestinon has helped. Thanks for the encouraging words.
Thanks everyone.

That is an awful high dose of mestinon especially if they are concerned that your first tests were wrong somehow. I'm on 60 MG 3 times/day and I'm in bed usually by 7 p.m. Have you read anything about the overdose of mestinon? Causes worsening of symptoms. I know that doses are increased for various reasons, but the standard dose is 60mg unless you are on the timespan. BTW, I have been told that I have to stop the mestinon one week prior to my Duke appt.

Just FYI, my daughter (who is very thin) does well on 90 mg of mestinon 4x/day. (The doctors we have seen all said they don't like timespan because it doesn't release a fluid dose although they will use if, for some reason, taking the meds on a schedule is too difficult.) My daughter does take 1/2 of a robinal pill 2x/day to counteract the side effects.

reddutch, I'm sorry, I was on 120mg 4x daily but at my last dr appt, I complained I was still having weakness, the neuro did tell me we would decrease the dose to 60mg 4x daily. You are right, it will make symptoms worse. I think I need more than the 60mg though so it'll probably have to be readjusted again.

I spoke with my neuro office today. I asked alot of questions and the one dr that called me actually cared and stayed on the phone with me for about an hour answering everything I threw at her. I asked why the first neuro showed a positve test and their office showed negative. I asked her if the medications I was on may have altered the result of my test and she said one of the test will show that once you're positive you're positive regardless of whether you are taking meds or not. If that test is repeated, levels can be different..lower or higher but you shouldn't show negative. That is why they thought the 1st test may have been read incorrectly because the same test they gave me at the hospital was negative. I told her I was a person that had the need to know, I couldn't just accept I have this disease if there is a chance that I may not have it. She said she understands that but 10-15% of myasthenics are seronegative. She said they are taking my case very seriously. I told her about my concerns with my meds and she said it takes a while to find the best treatment and dose of meds and said she knew how difficult and stressful it must be but to just be patient. She said I have every MG symptom and is confident in saying that's what it is but because I am having other symptoms not typical of MG, she wants me to have other tests. I told her that I thought they did all of that when I was in the hospital and she said there are some things they wouldn't just test for unless they had reason, including getting a muscle biopsy. She told me about another autoimmune condition called Polymyositis, that could be overlapping. So, as far as MG goes, with my ocular problems along with the weakness she said on a scale of 1-10, she would rate me at a 9.9% positive for MG. My optomotrist seems to agree. So I told her I would accept it and get out of denial. She kept reassuring me that they wouldn't have me on treatment if they didn't feel very strongly that I had MG. She's tapering me off the prednisone but said because I developed drug induced diabetes it needs to be done slowly and monitored. I was impressed, she was really on top of things. I can at least now say I have accepted that I really do have MG and I can start taking steps to educate myself better and learn how to take care of myself. So do you guys think she answered the questions ok? I know all the tests for MG really confuse me.
I wouldn't have known some of the things I needed to ask if it wasn't for people at this site. Thanks everyone for your feedback!

I went into The ER when the pills that my cvs gave me where out of date and falling apart

Before I was diagnosed, every test I was given was negative. The doctor told me that this was common, that's why it's so hard to diagnose. Eventually, It made it's presence known in my blood work. The doctor also told me that sometimes people with only ocular MG, have very high readings and people like me that are displaying severe symptom's, have no readings at all. It's such a mysterious disease.