Thanks for the support

[Bubble89]

Hi all

I don’t post often but I read posts frequently. This page has been a big help to me in my diagnosis journey.

I posted last year after a disastrous Rheumatology appointment which had left me reeling. It took 8 months but I’ve just had my second opinion appointment, and the verdict is in. They don’t think it’s lupus.

I feel more able to accept that after seeing this doctor though. She listened to everything I said and spent a LONG time talking to me, explaining everything and answering my questions. The bottom line is she isn’t seeing the immune markers that would make her comfortable pursuing medication.

When examining me however she found that I’m hypermobile. I guess it says a lot about how good my prior examinations have been that no one has picked up on this before! But after picking up on this she had me do some other tests, and it looks likely that I have a Hypermobility syndrome on top of the fibro and hashi’s. She also thinks I’ve got POTs. So. It was not what I expected going into the appointment but it feels good to have come out of it with an answer that at least makes sense.

I’m getting set up with specialist physio and am trying to learn and get my head around the HSD stuff which is daunting, but a good step in the right direction 😁

I just wanted to say a massive thank you to the people in this group and to wish you all well for the future. My road to diagnosis has been long and confusing, and having your advice and support has been invaluable.

Good luck

Bubble x

[whisperit]

That's a lovely thought, thank you Bubble.

Physio-wise, my advice would simply be to adoptt he same approach as you did with your rheumy, and keep looking for one who values your participation in the process as well as being technically excellent.

I genuinely worship the ground my current physio walks on. If only she had a sister who did rheumatology

Good luck with the next stages of your journey. x

[CecilyParsley]

I am so pleased that you have had a thoughtful and considered Consultant who actively listened and examined you. It is such a huge relief to be able to trust and have faith in a doctor and for you to be able to move forward with the right help and support. Good luck xx