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I’m so sorry you’re going through this uncertainty. It doesn’t make a lot of sense in these times to not have better definitive diagnoses with the advancements in medicine. I was finally diagnosed with myasthenia gravis after about 20 years of various symptoms that each doctor sent me to another, etc , etc , etc . We have to become our own advocates and your daughter is lucky to have you.
I only would suggest keeping precise records and documentations of all treatments, tests, doctors etc .
If you have the financial resources there are medical specialists that can be hired to help navigate a person’s medical issues and appointments and all . I couldn’t afford it … i just heard this from an acquaintance. He was telling me it cost him about 3 thousand dollars a year to have somebody
Manage his medical care. A medical concierge I think he called it . Has anyone had any experience with this kind of service? I don’t know.
As a retired RN I could imagine that could I would have liked to do such work for people… lol … not now though it is hard enough taking care of myself !!!
Good Luck!
Replies to "I’m so sorry you’re going through this uncertainty. It doesn’t make a lot of sense in..."
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@newtogmg75f You're very kind to respond to this "cry in the wilderness"! I'm sorry to learn of your diagnosis of myasthenia gravis. This was one of the first diagnoses that my daughter's specialists considered, but it was ruled out early on, along with several other conditions like MS and Guillain-Barré syndrome. Each time I'm on the Mayo Clinic campus in Rochester it dawns on me how many, many things can "go wrong" in the human body, how many extraordinary advances medicine has made, and really how little we do know about how to treat so many conditions that plague us. I hope you're finding ways to enjoy your life while managing your disease. I know on some level you must be grateful just to finally have a name attached to it, so you know what you've been dealing with all these years.
I'm a retired musician and, as you can well imagine, I don't have any kinds of funds to cover the cost of a medical concierge. It would be a lovely luxury, but it's just not in the cards. I've solicited support from just about every available resource to help pay for these services; we're currently on appeal #11 with my daughter's medical insurance carrier. They are draining us dry; all I have is my Social Security, and my "savings" have dwindled to about 40% of what they were in April. I'm 74 years old and have no other source of income, so in addition to this being frustrating it's also frightening. I know it's hard for you to take care of yourself, and I do sincerely wish you well as you advocate for yourself. I always tell my daughter, "Try to find something funny." Maybe if we can laugh it will take some of the sting out of all this. Be well, and thanks again.