Preparing for an appointment with Dr Stewart (Sussex)

[Macatas]

Hi all, after being ping-ponged around between my Rheumatologist and my GP, I've finally been referred to the Sussex-Wide CFS service.

I attended the group workshop thing, which was nice enough but only very basic information (we did get to snuggle down under blankets and rest though, even the carers!)

Now, I'm meeting the specialist himself, and I'm trying to prepare because I never remember to ask the relevant questions in the appointment and I don't want to forget anything important.

I found this thread and it's helped with setting expectations for the tone of the appointment: https://forums.phoenixrising.me/threads/has-anyone-seen-dr-stewart-in-sussex-uk.39904/

I'm not well-versed in medical jargon at all, so admittedly a lot of the things I read on this forum go right over my head, but I've at least gleaned from that thread that a lot of people with ME are low in Coq10 (I'm not really sure what it is but my mum seems to know, so she can help with that!)

The problem is that I always forget to ask about alternative diagnoses and tests that I've heard about. I'm making a list, and so far all I've got on it is to mention that I've not been tested for lyme, and to discuss my cardiology situation/testing for POTS.

I'm also writing a big list of my symptoms and biggest problems because when I'm asked in appointments I always forget something!

If anyone can think of things I should be pushing for and mentioning, or if you've met this doctor and could talk about your experience, I'd be really grateful!

 

[ryan31337]

Hi @Macatas,

I gave my experiences with Dr Stewart's clinic in the thread you mention, there's not much more to add.

My personal opinion is that the clinic may be able to help you with emotional difficulties related to chronic illness, as well as appropriate pacing techniques to avoid symptom exacerbation. But beyond that, do not expect much in the way of specific investigation or treatment.

The best you can really hope for is onward referral (or recommendation to your GP for onward referral) for more specific complaints. The NHS will not help you with CFS/ME.

If you can break it down & dwell on more specific complaints like OI/POTS, hypermobility, GI issues etc. you can get somewhere, provided you cherry-pick the clinics. If you just see local consultants, without special interest, you won't usually get very far as they're often only interested in excluding serious disease and not actually helping you.

Good luck,
Ryan