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I am nearing 68 and have a genetic progressive disease but have no one but myself to rely upon. I can't find a primary care doctor who cares to learn about my disease and help me to deal with things like loss of eyesight, balance problems, increasing jerking of hands so I "toss my food," memory problems, etc. I make a small fixed income, but too small to qualify for Medicaid. I want my independence, but I am also very lonely. If it matters, my disease is called MERRF and is caused by a specific mitochondrial DNA mutation. It is a rare disease and can turn from asymptomatic to terminal quickly or never. I lost my youngest son at 35 and my 49-year-old son is severely affected and worsening. My symptoms don't seem as severe, but they are also of the type that are less visible. My activities are very dependent on my eyesight (reading, piano, computer research, etc.) but I have optic atrophy and it is worsening. What other kind of details do you want?

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CarolLynn, I found your comments and question very insightful, and I did send you a private message. AlisonBoBalison, I have never had good luck even getting to talk to a human being on Medicare - but it may be worth it to try it. The thing is not finding a PCP with geriatrics specialty that take Medicare - a lot do - the problem is finding one who cares about his/her patient enough to learn about a very complex and potentially life-threatening medical problem and working with that patient's neurologist to keep little problems from turning into huge ones. I am, right now, the caregiver of myself, but as I have siblings and children with the problem, I try to help them, too, especially my two affected children. They have a neurologist right now who doesn't know what he's doing, and they don't listen to a thing I have to say about it; but like it or not I am a sort of caregiver to them since I have to help them whenever they need me.
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Re: the MERRF - am l correctly inferring that you're 35 year old son passed away from the disease and your 49 year old son also has the disease and is worsening? Were your doctor's able to tell you your degree of heteroplasmy?

anewleaf says: "l make a small fixed income, but too small to qualify for Medicaid", di you mean TOO MUCH (HIGH) to qualify for Medicaid? What about your son, does he qualify?

Do I understand correctly that you have Medicare plus a supplemental, and that your supplemental is a high quality which you pay only about half for compared to what you would have paid had you not been a state worker? If this is the case, you DON'T belong to an HMO, you neither REQUIRE nor NEED TO CONSULT a primary care physician (PCP) to get you to another doctor, in other words, you can self-refer, is that right? You already see a neurologist and have you also had a PCP? If so, what kind of doctor was that?

I googled "geriatric doctor spokane washington" and I got 5 doctors. Usually hey geriatric doctor is a family practice doctor or an internist who's taking additional hours to be able to qualify as a geriatrician. You can do the search then call each individual doctors office, tell them you need your medical care to be overseen by a geriatrician and ask if they take Medicare plus supplemental.

If you find you want to answer these questions and do these things, I look forward to an update and probably new questions?! MERRP is very rare. I am a nutritionist and would appreciate being able to follow your case. My email is listed on my profile page if you would like to email me privately.
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Hey! I have an answer for this! Lol, just went through this recently, trying to find geriatrics physician who accepts Medicare for my father. The answer is call up Medicare directly and they will email you a list of PCP with geriatric specialties in your area that accept Medicare. It looks like the list they emailed me comes directly from a website that may or may not be directly accessible by the public.

But even if there is not a directly accessible website to help you, I was able to relatively quickly and easily get a Medicare CSR on the phone line, tell him my need, and he emailed me the list of providers. Good luck!
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And with all the primary care physicians in a city the size of Spokane, WA, how in the world do you find the - maybe - one who cares? I asked my neurologist, and he said he only knew of one, and you had to belong to Group Health to see her. Group Health Medicare Advantage plan is much, much too expensive for me - I can only afford a supplement (F), and as a retired state employee I only pay about half what others pay for it.
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I would say that 68 yo would be old enough for a geriatric care manager. I would imagine that a geriatrician would accept Medicare. If not, then search around for a primary doc who cares. Take care.
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