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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..."
Kelly, Alumna Mentor | @kdubois | Mar 27, 2017

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.

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