Jack Stayton

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]