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Undiagnosed, debilitating health condition

Autoimmune Diseases | Last Active: Mar 28, 2017 | Replies (9)

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@kspiel

Thanks so much for your thoughtful response. I certainly agree that finding the right PCP can be a major hurdle. From what I have seen since being involved with my partners health care, the responses and care have ranged from total apathy to total antipathy. We have a physician now who is willing to make referrals, but is otherwise not particularly adventurous or enthusiastic about research into her condition. I am currently exploring options around provincial health coverage here in Canada extending to out of country clinics in order to get closer to a visit to Mayo. Alternatively, a clinic at Mt. Sinai hospital in Toronto deals specifically with arthritis and other autoimmune diseases. Unfortunately, while our socialized medicine here in Canada is in many cases a wonderful asset, it does make wait times for clinics such as that very, very long.

I am very heartened to hear about your recovery. That is wonderful for you, and wonderful for me to hear.

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Replies to "Thanks so much for your thoughtful response. I certainly agree that finding the right PCP can..."

Regarding PCPs... in my local medical community (I live in Western NY), I've been having better luck over the past few years with younger doctors (late 30s / early 40s) when it comes to taking the steps to keep looking for answers. As a fellow-patient with many, many medical conditions, I told my PCP that I truly need a "general contractor" and that he needs to have a vested interest in seeing me succeed. Luckily, he agrees, and I truly feel that he cares about me. He's actually told me that, as a doctor, he has learned vast amounts from me regarding what it means when a patient advocates for themself as much as I did/do. There are good doctors out there!

As an aside, my father-on-law was recently told in February that his knee replacement surgery would be scheduled for late July. I told him to go back and tell them that he couldn't wait that long, that he's already waited a very long time, and that he wanted to get on the waiting list in the event that there was a cancellation by another patient. He did, and his surgery was last Friday. Maybe this strategy will work for your partner/you.

And, perhaps you can schedule at Mt. Sinai in Toronto while continuing efforts to get into Mayo. Doing that won't hurt anything.

Again, never lose hope.