Ronald E. Clever

I would think that the insurance dictates what they will pay for as to administering IV.  I am on Vivgart and before that IVIG and they have always sent nurses to my house for treatment.

Kevin,

Thanks for the info. I am also on Vivygart and recently left my job on disability.  My insurance at my job expires at the end of 2023 so I hope my SS disability is approved by then. My insurance started charging me the 20% on everything and it is adding up with all the appointments I have. So far I haven’t been charged for the VIVYGART…[Read more]

Kevin,

Thanks for the info. I am also on Vivygart and recently left my job on disability.  My insurance at my job expires at the end of 2023 so I hope my SS disability is approved by then. My insurance started charging me the 20% on everything and it is adding up with all the appointments I have. So far I haven’t been charged for the VIVYGART…[Read more]

I am 61, weigh approximately 425lbs.  I started out with double vision about 10 years ago and it came on sporadically so I never thought much about it.  Then in 2017 it came back and would not leave.  My opt neurologist diagnosed me with MG and sent me to my neurologist,  Since then I have deteriorated.  I have a difficult time taking a show…[Read more]

double vision

I have a problem while I am eating that food will go up my nose and it is very uncomfortable until I am able to get it out.  I love curry and it really burns.  I don’t know if this is what you are referring to or not,  I never thought of it being related.  I have to eat really slow and be very careful especially with rice.

I am still working but plan on going out on disability June 1.  I start out the day by driving 75 miles to my office.  I then plan what I need to get accomplished that day since I can only do so much since I have to have the energy to drive home in the evening.  By the time I get home in the evening I am exhausted and can barely stay awake to ea…[Read more]

Heather Kaye,

Your last line says it all to me.  I feel as if I have been exhausted for the past 15 years.  I can’t even sit to watch a movie or an hour long show for some entertainment without falling asleep for 3 or 4 hours.  And since I commute and work I am sleeping all weekend.

I am 61 years old, getting ready to leave work on disability due to being out of ;breath everywhere I go.  I weigh in at a whopping 425 lbs which is definitely part of my problems.  But I have been overweight all of my life but never as big as prednisone has made me along with the other drugs.  It seems any drug I take either makes me hungry or sl…[Read more]

I am sorry to be so uninformed but what is Seronegative MG and how would I know if I have it.  Should I be asking this question to my neurologist?  She is very good by the way but I have never heard of some of these variances of MG.  I only know I have generalized MG.

Thanks

<p style=”text-align: right;”>As far as the double vision I still have that and it has not improved.</p>

I have been treated by Dr. Wagle at John Hopkins from the beginning and could not be happier. She is very attentive and present with my therapy. My local neurologist didn’t know what was going on and I went to John Hopkins on my own and have never looked back. I am not in perfect health of course but I am doing pretty well. I have other issues besides MG.

I have had double vision from the beginning of my journey. My ophthalmologist is the one who had me tested for MG.  I have always had prisms in my glasses so that I can drive. I am fortunate to have great insurance from the union I work for. My right eye drops more than my left but I never really noticed until I started reading again and now it…[Read more]

I am an Accountant so as I like to put it I polish a chair with my ass. I have been trying to put off retiring since my current job is one I really like but now at 61 it looks as though I will have to give in. I fell two weeks ago at work in the bathroom. Luckily other people heard me hit the floor and they called an ambulance since I was bleeding…[Read more]

Wow this is right up my alley.  I sleep at most 4-5 hours a night and I commute 90 mins each way to work.  I am hoping to go out on disability with in the next 10 months but we shall see.  I also have sleep apnea and am morbidly obese weighing 425lbs.  I have had several sleep studies over the years but now with MG I just had a new one and the…[Read more]

UPDATE:  It looks as though I will be retiring in 10 months when I turn 62.  I don’t want to retire yet but in all honesty the commute is what is wearing me out.  I drive 90 minutes each way so I will probably try to find something close to home or work remotely.  I have been lucky that my IVIG is done on Friday & Saturday so I only had to tak…[Read more]

I understand how you feel. I want to rescue another big dog, we have 3 little ones but I am letting that up to the others as they will be doing most of the work.

I am going through that now. He doesn’t seem to get it or doesn’t want to. I fall asleep at my desk frequently and he has given me 3 written warnings. One more and I can be fired and I have worked here for almost 10 years. Luckily I belong to a union and they are working with me to keep me employed.  I have a family that depends on me financially…[Read more]

i am worried about this very thing at the moment.  My boss has been very unreasonable about my health.  I don’t think he believes I am having the problem I do, especially with fatigue.  He as caught me falling asleep at work and one more infraction and he say he will have no choice but to fire me.  I am in a union and have reported this to the…[Read more]

I don’t want to do disability even if I am able.  I would rather work but at 61 and with many health issues on top of MG getting another job is not an option.  I weigh over 400lbs and at 61 finding a work from home job would be a miracle.  I also take care of my sister as much as I can.  She has dementia.  There is not enough time in the day and…[Read more]