[kut]

I told myself I would’ve pushed these doctors harder. I feel the doctor’s hands are so tied so much by insurance companies. They’re not taking the time with the patient. I was told it was because of my age because I have buried my husband and my mother and my mother-in-law that things in my life, but they never went deeper but the debilitating fatigue and every symptom was just right there, five doctors missed it. The shortness of breath the fatigue and the lack of muscle strength could’ve been handled much better if I was diagnosed earlier, at least I feel it could be and you’re right finding the right neurologist who will work with you and work with your insurance company is a real plus for you. Getting an appointment is another challenge. I was very fortunate that my ophthalmologist said I explained my symptoms to a tee and he called and got me in with the neurologist the very next morning. Hoping this third type of treatment helps me. This is a journey you must take along and be the best advocate you can for yourself.

[kut]

Being spontaneous! I was always ready to go out to dinner, a show, a card game at a drop of a dime. At 78, I felt I should choose to do what makes me happy first. Housework, bills, etc could always wait a day or two. But now I have to access my stamina when I get up, see how my eyes are adjusting, shortness of breath, etc before I can plan my day. When I push my limits there is always a price to pay. The physical changes are hard, but the mental pressure on my new way of life is even harder to accept. I’m working on it day by day.

[kut]

I was diagnosed last December with MG and I’ve tried several different medications so far. I’ve been lucky that Medicare and my AARP supplement cover most of them. Like you stated, I just heard Medicare is not covering IVIG STARTING IN 2025 because they do not consider it any type of cure. In 2025 my prescription company has picked up the bills, but they were giving me a hard time saying they weren’t going to cover this at first. In October when we had to sign up, I called and not really drilled them, but had so many questions about what medicines are covered and they told me mine was covered and then reneged on this. I fought them, stating they sent no notification on medicine changes, that I called and spoke to a rep., took their name, date and time of the called and told them they were giving out false information to patients. Since then, I did get a letter saying they would cover my IVIG through 2025 by my prescription plan but I have to renegotiate with them through my neurologist, I am fortunate that my neurologist does work with me and the insurance companies.

Right now, I’m disputing having been denied massage therapy. When I go to PT, I try to explain my condition and limitations, but they have their ways to rehab you which just cause me pain. The massage therapist I hired seems to work either me well and I do go relief for a few days which is wonderful, but Medicare won’t pay for this either.

I have a daughter, now 54, who’s been diabetic since she was an infant so I know you have to fight, you have to speak up for yourself to get the medical attention you need. Why do they make it so difficult for people to receive proper care. Thanks BIG PHARMA.

Let’s<font face=”inherit”> pray Medicare will rethink just how valuable these drugs are. </font>