Feeling lost can anyone help?

[Tiggywoos]

Hi lovely people

Recently got diagnosed with UCTD and tested positive for pm-scl 75 (scleroderma)

Private consultant felt needed to be slotted into NHS so wrote to them twice but no appointment until December .

My question is has anyone seen a private rheumatologist in the Bristol or Weston area ? I went to Cardiff spire for diagnosis but not keen to go back (won’t go into detail)

I’m really struggling with painful bilateral joints and had waking headache for 3 years. I’m on hydroxy which helped rash but has done nothing else .

I don’t feel like I can wait till December 😢.

Thank you so much for reading and sorry for sounding desperate .

Love to you all and take care ❤️👯‍♀️X

[Hidden]

I’ve just PMd you. 😊

[Tiggywoos in reply to Hidden]

☺️

[Hidden]

Feel for you and hoping today’s a better day 🤗

[Tiggywoos in reply to Hidden]

Thank you stillsdisease 😊. Take care ❤️X

[sarahalice]

Hi.I wonder if your GP could start you on a very low dose of steroids to see if that helps, might be worth talking to them about it.

Hope you get better soon x

[Tiggywoos in reply to sarahalice]

Thank you lovely😊 . Yes I think that’s a good plan and I don’t think he will refuse as I was on them last year . If the headaches get better it shows they are more than likely linked to CTD . Take care x

[sarahalice in reply to Tiggywoos]

Fingers crossed it brings you some relief, and hopefully your GP might be able to request a faster appt 🤞X

[misty14]

Hi tiggywoosSorry your struggling with painful joints and recently diagnosed with UCTD. Welcome to the club that im in too. Hydroxy can take up to 3 months to work. How long have you been on it?.

A steroid injection could be given to tide you over till it kicks in better.

There are quite a few rheumy's in the Bristol area who im sure do private appt's as well. Its a case of researching them. Dec is way too long to wait for an appt. You could phone the clinic and ask to go on cancellation list.

Hope some of this is helpful and you have a breakthru soon. Keep safe Xx

[Tiggywoos in reply to misty14]

Thank you Misty . Started hydroxy last September and it’s been brilliant on rash (was horrendous before 😳) . I can’t imagine it will work on joints now but maybe it will ?

After posting i defo think it’s worth speaking to gp about steriods .

I’ll research the Bristol ones, thank you . Hope you have lovely weekend x

[misty14 in reply to Tiggywoos]

Hi tiggywoos, im glad hcq has helped your rash, its very good with skin problems. As you've been on it a few months now i agree it may not help your joints but maybe also the dose could be adjusted. What are you on?. I agree re steroids and gp if needed. It didnt help my joints that much either.

Bath have good Rheumy doctors at the Royal United Hospital there.

Also in Bristol there's Southmead Hospital and Bristol Royal Infirmary all with good Rheumy depts. The doctors there are bound to do private and nhs work.

Good luck with it all and i hope you feel better soon. Keep safe. Xx

[Cas70]

So sorry you are going through this. It’s awful. I wish I could assist but why not ask your Doctor to refer you to St Thomas’s in London. You are allowed under Patients. Garter. They sorted my friend out in an afternoon. Diagnosis and prescription and treatment plan forwarded to get doctor. Good luck.

[Tiggywoos in reply to Cas70]

Hi CasI asked him months ago to refer me to Bath but he said it was too far away 🤦‍♀️. I will definitely research St Thomas thank you x

[Cas70 in reply to Tiggywoos]

Honestly, I know people who travel miles-and miles to go to St Thomas’s as it a Centre of Excellence for Lupus. Look on line for Patient’s Charter - we have the right to request the Doctor and the Hospital of our choice. We are also entitled to 2 second opinions. I went with a member of our group to see her doctor. She made an on line appointment there and then. She had waffled on before and my friend felt ignored as we do quite often. You have to push Doctors I’m afraid - we show them too much deference- take someone with you for support, and quite the Patient’s Charter.Good luck and keep us posted.

[CecilyParsley]

Hi Tiggywoos, I am so very sorry that you are suffering. Didn’t your private Rheumatologist have any recommendations for your pain and other symptoms?Call them and ask them to recommend treatment to your GP while you have to wait for the NHS Rheumatologist. You need help now nkt in December. Gentle Cwtches xxx

[Tiggywoos in reply to CecilyParsley]

I’ll send you PM 😊❤️X

[KayHimm]

You have gotten great advice from people here. It sounds like you live reasonably close to Bristol. I am not familiar with UK geography but pretty good at spotting good doctors.

You might want to consider Robert Marshal. He is the clinical lead in rheumatology at the university hospital there. He sounds well-trained and experienced. Academic doctors are generally a good choice.

I agree you shouldn’t have to wait until December.

Best of luck

K

[Tiggywoos in reply to KayHimm]

Thanks so much Kayhimm for your knowledge and kindness as always 🙂

[svfarmer]

Hi Tiggywoos so sorry your in pain at the moment - I actually live in Bristol - I see a Dr Marshall at Bristol Royal Infirmary, he is wonderful, maybe you could ring and see is he does private appointments ? Xx

[Tiggywoos in reply to svfarmer]

Thank you sooo much as Kayhimm mentioned him 🤓. I’m going to google now to see if he does private work . I need someone I can actually “talk to” if that makes sense not someone who already has their own agenda ! Do you mind me asking do the BRI do your bloods or does GP liase with rheumatology? Apologies if I’ve asked before ! Xxx

[svfarmer in reply to Tiggywoos]

My GP surgery do all my bloods apart from when I have a check up at the hospital x

[KayHimm in reply to Tiggywoos]

Looks like he sees private patients. He lists the amount and the insurance he takes.

[Tiggywoos in reply to svfarmer]

Looks like he does Nuffield Thursday afternoons 🙂

[svfarmer in reply to Tiggywoos]

Brilliant x

[KayHimm in reply to svfarmer]

Sv - did you notice I spotted him from across the pond?! Sounds like his bedside manner is as impressive as his bio.

[Tiggywoos in reply to KayHimm]

Kayhimm I think you should be a consultant headhunter for health unlocked 😉🤓

[KayHimm in reply to Tiggywoos]

Haha .. You know, my doctor friends have taught me how to know good doctors. They look for where they trained, did their fellowships and, at times, the quality and number of peer-reviewed publications.

One thing I have learned is that there is never any « best » doctor. There are many good doctors and only a limited number who move the field forward. But the research doesn’t matter to an individual patient, only the field as a whole.

And how we feel we can relate to someone is particularly important when dealing with chronic illness.

When SVfarmer thought this doctor was wonderful, that meant he was also good with patients.

😀

[svfarmer in reply to KayHimm]

Spot on 😘

[KayHimm in reply to svfarmer]

There are the rare doctors who are so kind you get tears in your eyes when you remember seeing them with a sick child in the hospital. I now have a radiation oncologist who is so concerned about his patients that, I swear, if I told him my ear lobe had started to itch, he would tell me he wanted to hear more about that. 😅 He apologized because he saw me on Thursday instead of Wednesday because he attended his child’s graduation.

Don’t we wish we could clone the special ones?

😍

[svfarmer in reply to KayHimm]

I’m so sorry KayHimm I didn’t realise you had cancer - so very sorry to hear this, my best friend has bowel cancer and she has just started her chemo but she is so very ill from the side effects 🥲 it’s so awful . Your doctor sounds amazing - Dr Marshall is the same , he’s such a lovely caring consultant, very rare indeed , he is so sympathetic and actually takes the trouble to listen to you - it makes all the difference dosnt it - sending big hugs across the pond to you xx

[KayHimm in reply to svfarmer]

Thanks, SV. 🤗

[svfarmer in reply to KayHimm]

Yes kayHimm think Tiggywoos is right you should be a consultant headhunter 🤣🥰

[KayHimm in reply to svfarmer]

👍🏻👻