Finally after waiting about 10 months I have a rheumatology appointment later this month re my Raynaud's I will not want to be fobbed off off so I have started to make a lost of questions to ask
I know everyone is different and symptoms slightly different but what were your questions I don't want to miss asking anything as not sure what the follow up will be
Thanks xx
I just looked to see if you are reporting symptoms other than Raynauds but can’t find any. So I assume that your main concern is your Raynauds itself? Or are you concerned that Raynaud’s might be secondary to an underlying autoimmune disease? This information is key to any advice members of this community can offer about your first rheumatology appointment and why you fear being fobbed off.
My first rheumatologist was entirely uninterested when I reported sudden onset of Raynauds in my late 40s about 13-14 years ago. He just shrugged and said yes it was often associated with autoimmune diseases - same when I reported dry eyes, mouth and symptoms he attributed to small fibre neuropathy. His only focus was on swollen, tender joints. Similarly he wasn’t interested in my lists but I used them anyway just to keep myself on track. Keep them as short and succinct as possible - one sheet of A4 maximum. My present rheumatologist and other specialists all like my lists now and ask for copies so they can refer back to them in their letters. Best of luck - let us know how you get on!
Thanks for your reply yes my main concern is Raynaud's which has got progressively worse over the last 18 months so I am wondering if anything else is going on but gp hasn't really been interested since referring me stating that they can't do anything else until I have been seen by rheumatology unless they actually meant that I should move to a warmer country !! I'm not expecting much progress when I do see them but it is nice to know that I have finally made it to the top of the list and don't want to miss anything at my appointment as it's taken so long to get it - so there definitely will be a list of symptoms and a few questions I want to ask
Hi Chumpy,I've been diagnosed with overlap Raynaud's (a form of Scleroderma - the probable cause of lots of things I have going on).
I found this quite helpful (and it doesn't just apply to Scleroderma): sruk.co.uk/scleroderma/scle...
Also recommend taking someone with you as there can be a lot to take in.
A 10 month wait to see rheumatology isn't bad so make the most of it! I had to jump through lots of hoops before I got there and (interestingly) my Consultant tells me they don't have many Raynaud's sufferers on their books as most are dealt with by their GPs.
Hope they're really nice and helpful and listen to you properly xx
Thankyou just had a quick look list has already been started and I am definitely going to make some notes I'm not really sure that they can do anything but but just being seen and hopefully getting some answers would be good x
Just wanted to come back to you to ask if you got bloodwork done by your GP to look for underlying autoimmune diseases? This would usually be done in order for rheumatology to decide on whether to see you or not and comprise of at least a full blood count, inflammatory markers and ANA (anti nuclear antibodies). It’s certainly unusual that they would agree to see you otherwise unless perhaps you have digital ulcers or other skin changes in your fingers as well as Raynaud’s. Otherwise usually it’s for a GP to diagnose and treat primary Raynaud’s. If you live in England and had blood tests done then you can usually find the results of these on your NHS app. Hopefully you don’t have an underlying autoimmune disease but symptoms to report on your list if you do have any would be rashes, joint pain, hand and finger swelling, tightness, fatigue, reflux and gastritis, dry eyes, sun sensitivity, recurring fevers etc
I have Raynaud's secondary to crest. My gp had tested for antibodies and then referred me to rheumatology.
Thanks for this - sounds pretty standard protocol - but it was Chumpy I was asking as they haven’t mentioned how they had the referral to rheumatology accepted. It’s hard enough for even those already with diagnosed rheumatic autoimmune diseases to get seen these days on NHS! 😊
Rheumatology didn't want to see me at 1st but gp got back to them insisting they saw me I had bloods done about 4 months ago I will contact GP to see if they need doing again before I go - there were a couple of things but I never see the same gp and it's hard to keep a track of whats going on when they ask you why you had a blood test when they sent you and you are sat there whilst they are reading your notes to find out why when you are there ..... 🙄
If in England you can look at test results on your NHS app. Otherwise just request the practice give you copies. It’s mostly your anti nuclear antibodies/ ANA you need to find out about and these probably don’t need retesting by GP but inflammatory markers etc might.
good morning I found it helpful to do a symptoms diary and also took pictures of my hands feet etc I did have more symptoms than my Raynaulds such as poor swallow joint pain fatigue gastric issues and recurring temperatures I felt very unwell it took me 2 years to be seen but they did a full blood work and examined me I then got a call two weeks later to go back which is when they said possible systemic sclerosis I Had lung function heart echo scans and X-rays on hands knees feet barium swallow camera up and down fybro scan MRI scan etc and then sent me to royal free to be seen this was another 6 month wait so if you have any other symptoms no matter how small write them down my systemic sclerosis had attacked my Gaul bladder too so due to thickening sludge and sepsis it was removed although by this point I felt so unwell and had lost over 3 stone I paid privately to get it out as the wait list was long and I couldn’t bare it anymore due to me not having stones apparently I was not a priority ?
What I would say is you need to be clear and concise and if you struggle to take things in then ask if you are able to record everything so you can play back later I do this all of the time as I become overwhelmed and it helps me to understand everything that’s going on . I do hope you get the answers your looking for and treatments needed much love x
Well done you! We have finally managed to shift her care from current hospital , St George's , to Royal Free, after paying privately to see Prof Denton at RF on the advice of another kind person here. She is attending her first scleroderma clinic next week 2.5 years after falling ill. By good fortune, perhaps, her gall bladder was excised many years ago.
This was my wife's experience (well, 11 months but who's counting?) and delayed by the head of dept several times or fobbed off with a first year registrar (i.e. a total novice, we refused the meeting). . I recommend writing a list of symptoms/goals and of course making sure they have the relevant test results ahead of the consultation. Ask for a physical examination too as this happily showed my wife was stronger and better than thought before.
Update on appointment I went with a list of symptoms and how I had been feeling I wasn't expecting much but the consultant was great and listened to me
Sent me for more blood tests prescribed me different meds and I need to book in for a chest x-ray to ensure my ribs aren't pinching any of my blood vessels
They have said they will see me again in about 6 weeks if new meds aren't helping they can look at other options
General prognosis years after diagnosis.
PREDNISONE!!! whats the alternative in the UK?
Impact on your life by taking immunosuppressants? 
RIP Shelley
multidisciplinary rheumatology team review
