And he’s recommending that I go to U of M for a consultation. It’s a cruise from my house, but he sctually called down there! Yea! I think making a list all the the things that have been going on with me really helped. I also cut-n-pasted some of the suggestions that many of you have given me on this forum. I really have felt like my symptoms have been pooh poohed for so long.
I was just reading about the eye problems, and the eye Doc pooh poohed all of those too. I am really glad and a little fearful that I will be going to the University of Michigan to get some answers. I wonder if they will just tell me it’s mild, take NSAIDs and basically “call us if one of your joints falls apart”
Good for you that you are going for a consultations. As to the eye doctor, you may need to find a new one that understands inflammatory eye disease. My eye doctor sees me every 6 months, because I am on Plaquenil and my eyes need to be monitored for signs of irreversible toxicity. Not common, but a realistic concern. I now have developed dry eye, and he promptly popped in plugs (I had already started Restasis and lubricating drops).
My point is, if you don't have any eye problems right now, wonderful! But if the eye dr is questioning the possibility of these, he won't diagnose you correctly if you do develop any eye concerns.
Hurray!!! You are very lucky to have a PC who did research: we all know that they don’t all do that. Don’t worry, they won’t blow you off at the UofM.
I know how it feels! My symptoms were pooh poohed, written off, minimized and rationalized for about twenty years. And that included my then-rheumatologist. Before I went to the specialty PsA clinic, I actually said to my sister “But what if they tell me there’s nothing wrong?”. She laughed. I feared that, really! Of course, once there, they took all my concerns (and I mean ALL, twenty years’ worth) very, very, seriously. They gave me answers, and they got me on the road to remission. I’m not there yet, but I feel confident that now, at least, there’s chance.
Go armed with a long list of questions! I did, and the amazing thing was, by the end of the consult pretty well all of them had been adressed, and a few I hadn’t thought of as well.
Let us know how this plays out for you. Do you have any idea when you’re going? All the best … I’d keep my fingers crossed for you, except that they’re hurting right now.
I wish you luck with U of M. My first rheumy referred me to the state medical school here, and I have to say, my experience was not positive. I had two visits with them. The first time, I waited 2 1/4 hours to be seen, the second time "only" 1 1/4 hours after my appointment time. Xrays that I had previously paid about $40 for were $195, the doctor ordered $4500 (not a typo- that's over four thousand dollars) of labs, and the office visit was billed out at about $600. (All prices are after the insurance discount.) If they want you to do xrays or labs, ask about prices and have them done elsewhere if possible if your checking account isn't bottomless.
The suggestion, after the labs all came back normal and the doc decided that the narrowing of joint spaces in my hands didn't matter (new in the last year), was to try going off my meds "to see what happens" and then return in four months. At that point he would do cortisone injections, something I have had a BAD reaction to, and will not do again.
At neither appointment did anyone ask what meds I'm on, and only the second time did they ask about drug allergies. I was to get labs done every 8 weeks, but got no lab slips. He said he would write refills as needed, but has failed to do so. I wish I understood why this happened. Maybe in a hospital-based practice, outpatients just aren't sick enough to warrant being treated politely, much less competently. Maybe I remind the guy of his first wife, who knows?
I sincerely hope you have a more positive experience. I'm sorry for having wasted two days of my life, two tanks of gas to get there and back, and the three months I waited for the appointment when I could have used that time to wait to see someone less rude and dismissive.
