Rheumatology appointment - queries

A

Amw66

Senior Member (Voting Rights)
My daughter ' s rheumatology referral has finally got to appointment stage .
She's very nervous . It's at 9am and her sleep cycle is between 5-6am til around 2pm. She will probably try and stay awake which will probably make cognition pretty awful. TBH , she probably wouldn't sleep anyway, so an afternoon appointment may simply be more worrying for her.
A paediatric rheumatology referral was our first experience of professional gaslighting.

She has asked me to post to see if anyone who's had such a referral can share any positive experiences/ suggestions as she didn't know what to expect .
Are there any questions people wished they'd asked ,
or anything ME specific that could be important .

We have a history of osteo arthritis and rheumatism running in females on my maternal and paternal lines . She has a host of symptoms which tick some, but not all boxes for some kind of connective tissue issues . So , like ME, a bit of a conundrum .

Thanks
 
I've seen two rheumatologists.

One was at a local teaching hospital in the US. She told me she doesn't manage ME, and to do self-help graded exercise therapy. I told her that wouldn't work and that the PACE trial proved it. She ordered a few tests for autoimmune disorders. I was positive for ANA, anti-dsDNA, and Rheumatoid Factor, which she didn't know how to interpret. I asked if she could investigate further and she recommended going to Cleveland Clinic.

The rheumatologist at Cleveland Clinic was better. He explained that he doesn't manage ME, but that he's seen people with ME or LC to help rule out autoimmune disease. That's what he did for me. He listened to my symptoms carefully, asked lots of obscure questions about my symptoms, did a very thorough physical exam, and ordered a ton of tests, all of which came back normal. While he didn't find anything, at least now I can be confident I really have ME and not an odd autoimmune disease.

When you visit the doctor, I recommend focusing on the aspects relevant to their specialty--the autoimmune symptoms and any tests that were abnormal. They're not likely to show much interest in ME.
 
RedFox said:
I've seen two rheumatologists.

One was at a local teaching hospital in the US. She told me she doesn't manage ME, and to do self-help graded exercise therapy. I told her that wouldn't work and that the PACE trial proved it. She ordered a few tests for autoimmune disorders. I was positive for ANA, anti-dsDNA, and Rheumatoid Factor, which she didn't know how to interpret. I asked if she could investigate further and she recommended going to Cleveland Clinic.

The rheumatologist at Cleveland Clinic was better. He explained that he doesn't manage ME, but that he's seen people with ME or LC to help rule out autoimmune disease. That's what he did for me. He listened to my symptoms carefully, asked lots of obscure questions about my symptoms, did a very thorough physical exam, and ordered a ton of tests, all of which came back normal. While he didn't find anything, at least now I can be confident I really have ME and not an odd autoimmune disease.

When you visit the doctor, I recommend focusing on the aspects relevant to their specialty--the autoimmune symptoms and any tests that were abnormal. They're not likely to show much interest in ME.
Click to expand...
Thanks. Sadly she's all too aware of the lack of interest. Usually this means she limits what she says as too many symptoms provoke incredulity . FND is being slapped on everything here at moment .
 
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