-
Ronald E. Clever replied to the topic What money can buy? in the forum Additional Resources 1 month ago
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.
-
Ronald E. Clever replied to the topic Are there financial resources to help with the high costs of MG care? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 3 months, 1 week ago
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]
-
Ronald E. Clever replied to the topic Are there financial resources to help with the high costs of MG care? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 3 months, 1 week ago
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]
-
Ronald E. Clever replied to the topic Very new to my diagnosis. A bit confused and would like anyone to weigh in. in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
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]
-
Ronald E. Clever replied to the topic D Symptoms of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 1 year, 2 months ago
double vision
-
Ronald E. Clever replied to the topic Do You Vomit Through Your Nose? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
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.
-
Ronald E. Clever replied to the topic How Does Myasthenia Gravis Intrude in Your Day? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
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]
-
Ronald E. Clever replied to the topic Working with MG diagnosed as a senior in the forum Working/Careers and Myasthenia Gravis 1 year, 3 months ago
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.
-
Ronald E. Clever replied to the topic Working with MG diagnosed as a senior in the forum Working/Careers and Myasthenia Gravis 1 year, 3 months ago
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]
-
Ronald E. Clever replied to the topic Do you have Seronegative MG? in the forum About Our Forum/Welcome Lounge 1 year, 3 months ago
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
-
Ronald E. Clever replied to the topic Ocular MG – Hacks, tricks, tape, etc? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 5 months ago
<p style=”text-align: right;”>As far as the double vision I still have that and it has not improved.</p>
-
Ronald E. Clever replied to the topic Mayo Clinic, Johns-Hopkins, Cleveland Clinic type centers; experiences/advice? in the forum Healthcare and Myasthenia Gravis 1 year, 5 months ago
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.
-
Ronald E. Clever replied to the topic Ocular MG – Hacks, tricks, tape, etc? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 5 months ago
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]
-
Ronald E. Clever replied to the topic Using MG as an Advantage in the Workplace in the forum Working/Careers and Myasthenia Gravis 1 year, 6 months ago
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]
-
Ronald E. Clever replied to the topic Does MG cause severe onset insomnia or does one's MG pills cause it? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 6 months ago
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]
-
Ronald E. Clever replied to the topic Informing Your Employer About MG in the forum Working/Careers and Myasthenia Gravis 1 year, 7 months ago
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]
-
Ronald E. Clever replied to the topic Taking Care of Pets in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 7 months ago
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.
-
Ronald E. Clever replied to the topic Informing Your Employer About MG in the forum Working/Careers and Myasthenia Gravis 1 year, 7 months ago
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]
-
Ronald E. Clever replied to the topic Disclosing Your MG When Applying for Jobs in the forum Working/Careers and Myasthenia Gravis 1 year, 7 months ago
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]
-
Ronald E. Clever replied to the topic Working From Home in the forum Working/Careers and Myasthenia Gravis 1 year, 8 months ago
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]
- Load More