SassyKathy
Forum Replies Created
-
- Have you ever felt misunderstood or judged because of your MG? Yes, I feel this way a lot. So many people have said their friend or co-worker or relative has MG and they are just fine – can’t even tell they have it. They only response I have been able to come up with is that is wonderful and maybe they are in remission and I hope I will be in remission soon.
- Do people treat you differently when symptoms are visible? Yes, some show concern while others completely ignore me. Being completely ignored is hard. Some of my friends seem to think I just don’t want to socialize and I am using MG as an excuse.
- How do you explain your illness when you choose to? I say I have a neuromuscular disease and on some days I am fine but on other days I have trouble walking or talking and I suffer from severe fatigue; muscle weakness; blurry vision and on and on. I explain this disease is like a “snowflake” – no two MG patients are the same. I may ask them to google Myasthenia Gravis to learn more about it. I explain that I had a breathing crisis and had to be hospitalized and receive plasmapheresis. I tell them about the immunotherapy infusions I receive (similar to cancer patients). I tell them about all the pills I take and the hideous side effects of prednisone.
Now that I have accepted the fact I have this disease, struggling with other people’s opinions has been a major issue for me. I typically don’t care what other people think of me but this is somehow different.
-
I have not found any good way to respond to this type of comment. I have a handicap placard for my car because if can’t walk very far without taking a break. I have a rollator that I don’t use very often. I guess if I did use the rollator, I would not get the nasty comments. But people either give me a sideways look or say something like “you don’t look handicapped” when I get out of my car. I typically ignore it. I think even some family members think I am “faking” it on my bad days because I have some good days when I can make a meal or do some cleaning or go out to eat. I never know how to handle it and it has definitely taken a toll on my mental health. I have been taking prednisone for almost a year now. I am starting to wean off but had some setbacks with the weaning process. I was about 20 pounds overweight when I was diagnosed a year ago and I have gained an additional 20 pounds on top of that. I desperately want to get this weight off and that has contributed to my depression as well. I most likely will seek the help of a therapist. I am taking an anti-depressant which has helped somewhat. Thankfully, I have a very compassionate medical team.
-
What would everyone recommend to help with blurry vision and double vision? I take 60 mg Mestinon 3 time daily. I have Ruxience infusions every 6 months. I am on Cellcept and I am currently weaning off Prednisone. I am 71 years old. I was diagnosed with MG 10 months ago. I have some muscle weakness and fatigue but some days those symptoms are not so bad. The vision issues are concerning. Thank you.
-
I have always enjoyed entertaining. I had to make all the food myself and from scratch. I would make sure my house looked nice. I had to learn that it is okay to take breaks when doing your household chores or cooking. Accept these things may take a little longer to get done. Stop worrying about what others may think. Don’t apologize for a messy or dusty house. Pace yourself. Don’t try to soldier on or muscle through. Sit down and relax. Take care of yourself. This diagnosis, as mind bending as it was, is actually a wake up call for me. I have learned to relax more.
-
I was originally prescribed 60 mg of Mestinon 3 times daily. After 6 months, my neurologist started weaning me off steroids and added that I could experiment with weaning off the Mestinon as well. I went down to taking it 2 times daily (morning and night) and after a few days of adjusting, it worked out well. Recently, he suggested that I try tapering it off a little more to help with the extreme sweating I have experienced this summer. So, I tried to take 30 mg 3 times daily but had more muscle weakness and vision issues so I went back to the 60 mg 2 times per day. It is crazy to think that the additional 30 mg made such a big difference for me.
-
I live in the St. Louis area and it is very hot and humid here. In the past I would love going to outdoor concerts, pool parties, and backyard BBQs. Now, I sweat so much it is embarrassing. Plus I experience breathing issues and extreme exhaustion. If I could get in and out of a pool gracefully, I would probably be okay at a pool party but that isn’t working out very well. So, I decline many invitations if it means being outside in the heat. I explain that having MG takes a bigger toll on me in the summer. I don’t think most people understand and may even think I am just making excuses. But, I have to do what is best for me.
-
Thank you. I appreciate your input.
-
I carry a MG card in my wallet, too. I also have a medical alert necklace and a couple of bracelets and I wear one of them at all times.
-
Thank you
-
I am right there with you. I have triple positive antibody, ocular and generalized MG. I can’t believe how often my symptoms change. Every day is different for me. Walking is becoming increasingly difficult. And, my vision, well that is just weird.