Jack Stayton

I can only say that Prednisone has some bad side effects, like medically induced diabetic type II. i was on it for a few months up to 60mg at the end. I now take Cellcept instead. I don’t really know what it does but I take 1000mg morning and night plus 240mg Mestinon daily. I’m stable but get run down after doing any physical activity. I am…[Read more]

Paul,

It sounds like you have the same Neuro that I do!  Same symptoms and I am positive for AChR Binding and Blocking as well as Modulating.  If you haven’t taken the blood test for these you need to.  As soon as the tests came back my Neuro put me on Mestinon (Pyrodostomine) and later on Cellcept.  The Mestinon stopped my double vision alm…[Read more]

ADJUST YOUR MEDICATIONS

I found that there is no particular set of what should be prescribed for MG. Reading these forums I see several different kinds of medications as well as different doses we are taking. I’ve asked my neurologist about that and there is no answer. I have been told that there is no test that will tell me how bad my MG is.…[Read more]

I look for the Brach’s jelly beans, black licorice.  Of course there is the candy corn too.  When it comes to what I’ll eat, there isn’t much I won’t eat 🙂

More: Acetylcholine Modulating Modulating, Binding and Blocking (AChR. Also Musk AB.  These are the definitive tests for MG.

Have him/her test for Achr.

I guess my first symptom was weak legs. I just dismissed it and went on with life. After something like a year I was driving home on a 4000 mile trip pulling my 5th wheel after a 7 hour drive. I got into heavy traffic and suddenly got double vision. I could not see the road nor the tons of red lights from traffic. I yelled at my wife (yes, yelled)…[Read more]

I’m interested in what blood work you get done every 3 months?  My neurologist has never ordered a blood test since my original AcHR tests in 2018.   When I ask he tells me there is no test that will tell me how I’m doing!  I’ve thought all along that he is wrong…worse than wrong but I get  nowhere.

Wow, I’ve never heard of LRP4 and anti-titin. My neurologist has never referred to anything like that. I’ve been told I have both Binding and Modulating Achr and do not have MUSK. I keep learning on this forum, thanks.
Jack

Michelle, I’m interested in following your journey. I too am in NM and have asked for a referral to Mayo. So far I have not been given one, however I am being referred to UNMH so will see if they have a neurologist familiar with MG. I think I have a mild gMG but I find out more on this forum than I get from my current neurologist. When I first…[Read more]

I have to ask, how do you get tested for antibodies? Do you redo the original diagnostic tests for MG? I asked my neurologist to tell me how I was doing on my meds to decide on a change of medication or determine if ever go into remission and he told me these tests don’t really tell you the severity of my MG. I keep reading from some of you…[Read more]

Despite my neurologist’s recommendation to NOT get the booster, I got it just over two weeks ago. I had no reaction to it other than a sore arm for a couple of days and tiredness the following day. I still don’t know why my neurologist said not to get the shot, he did not offer an explanation nor justification for his remarks. You might figure…[Read more]

I have been on Cellcept for about two years. I started on it as the neurologist was taking me off Prednisone. I have not had any problems with it nor do I take any blood tests because of it. Why are you having to have blood tests?

Thanks David. I think I will get the booster and would like to get another MG specialist. However it seems this one is the only one within network. I am going to check with the VA. I know they have neurologists but don’t know yet any of their specialties. I’m stymied why my doc doesn’t want me to get the booster. But he doesn’t monitor my…[Read more]

I was diagnosed about 3 years ago after having double vision while driving on a long trip.  I was immediately put on Mestinon 4 per day and referred to an MG specialty neurologist.  She started me on Prednisone and gradually increased it to 60mg.  That caused me to become diabetic (Type II) and put me in the ER when unknowingly my glucose hit 56…[Read more]