Search for New Rheumatologist: Update / Request for Feedback: Dr S Tosoundidou and Dr J Hunter (via Private Message Please).

[Foggyme]

Hi All

As some of you will be aware, like many here I have been struggling with my current rheumatologist for some time and have been searching for a new rheumatologist.

I was recently seen at the Lupus Clinic of Excellence in Birmingham and that did not go too well. LupusUK took this up on my behalf and, although retired and not taking on new patients, Prof Gordon has offered to see me next Tuesday, for a one-off consultation. How amazing is that 👏😀.

I then have the option and transferring to Dr Sophia Tosoundidou or Dr John Hunter for ongoing rheumatological care. At this moment, no idea who I should go with...but am going to see what I can discover. So...in the meantime...

I'm just wondering if anyone has seen either of these two rheumatologists and would be prepared to send feedback, via private message, in the strictest if confidence.

This is all rather sudden and I have to make a decision today so any feedback would be most welcome.

Now working on prep for next Tuesday's appointment...ideally, needs to be done and submitted today. Gulp.

I'm also very conscious that I keep popping up asking for things 🤔😐. I'm hoping that as I become more knowledgable I'll be better placed to support others...and so become more actively useful in the forum.

With thanks to LupusUK for their help in this matter...and to all you lovely people who have supported me and helped me thus far. 👏👏👏😀😀😀.

Hugs and good days to all xx

[JGBH]

Sorry about the dreadful on-going saga of disappointment... Keeping everything crossed for Tuesday's appointment in the hope you may find a way forward. Sorry, can't help as to the reliability of either rheumatologist.

Don't apologise for asking for help and not "giving back" to the community at this very difficult time. You have always been most helpful and supportive. So please, no need to feel guilty.

Keep fighting until you obtain some much-needed help and support. Thinking of you.

Big hug. J xxxx

[Foggyme in reply to JGBH]

Thanks JGBH. Much appreciated.

Like many of use here, I'm carrying lots of 'disappointment' and medical PTSD 'baggage', so I'm hoping that I won't come across as a prickly creature and get in the way of her trying to help me 🤦‍♀️🤞🤞.

Will let you,know how,it goes and thanks for your lovely supportive words.

Hugs back at you 😉😀xx

[Fennella02]

Did you get my PM about my experience of one of the above? Of course, mine was a few years ago when they would have been younger and less experienced.

[Foggyme in reply to Fennella02]

Oh Fennella02. I certainly did - just looked and realise that I never replied to you. That's dreadful of me - I thought I had but must have lost track of myself (commen occurrence at the moment), so very many apologies for that. I'm going to give myself a hard slap.

Yes...I'm taking your comments into account (and also the timing / more experience 'thingy').

Really quite difficult to decide...but decide I must 🤔🙄.

Thanks for your input and reminder and apologies again for being so tardy and rude 😱.

xx

[eekt in reply to Foggyme]

Golly, we all know how hard it is keeping track of everything, and with so much on your plate at the moment, no need for sorries!....Tuesday could be the momentous occasion when you're handed back the leading role in your medical care after many years of being disregarded, so channel all that nervous energy into the thorough prepping you're doing, and relax knowing you'll being good hands...be well xxx

[Foggyme in reply to eekt]

Aah thank you for your lovely words eekt .

Finally finished prepping and dispatched so that I can't fiddle with it anymore.

Have to confess, I'm a bundle of apprehension...just hoping that Prof Gordon is able to help. And that, as you'll know, is a hugh understatement.

Good hands...oh I do hope so 🤞.

I'm just about frazzled now...prepping is unbelievably hard... so off for a shower, food, and sleep (not necessarily in that order 🤷‍♀️).

Thanks for being so supportive...means a lot 👏👏👏👏

xx

[eekt in reply to Foggyme]

YES!!!!! It's a Hugh understatement, in a Hugh Grant - Kristin Scott Thomas kind of way...with your blood evidence, it is absolutely IMPOSSIBLE that you will be sent away empty-handed again.....(plus she is the tops: BSR author, patient care radicalist)....go to sleep counting all the dodgy docs you've seen, then count to ONE, the one that's going to change everything xxx

[Foggyme in reply to eekt]

Counting counting counting 🤣🤣🤣🤣 xx

[Hidden]

Foggyme you’ve helped me greatly so I’m not sure why you’re apologising for not being an active member here.

I don’t know anything about any of the doctors you mention I’m afraid but wish you the very positive change in fortunes you deserve. If it were me I’d try to condense matters to one A4 page and put most important/ relevant symptoms and signs in bold.

A photo album of any relevant pics of swollen joints, discolouring and rashes on iPad or iPhone would also be useful so you can access these and show them quickly.

Hugs for good luck,

Twitchy 🤗😎

[Foggyme in reply to Hidden]

So Hidden , I may have been active without realising it 🤣🤣🤣🤣. Really delighted to hear that anything I've said may have helped you.

Good points about the prep thanks...implemented and prep's now been dispatched (for good or ill 😐). Prepped-out and just can't look at it anymore...and can't delay any longer...so send has been pressed. Yikes!

Will post an update after the event (next Tuesday). Don't think I'm going to sleep a wink before then!

Thanks for the hugs...most welcome...and here's some back at you too 😉😀😀.