Scleroderma

[Nogodsnomasters]

Could anyone talk to me about this autoimmune disease if they have it or have experience with it in their family? I want to start off by saying Im not diagnosed with this illness but I am beginning to suspect I have it possibly in the mild form, i know it has varying degrees. I also want to add that I have health anxiety which my GP is aware of and I may be way off but it should also be known that my sister had Raynaud's, arthritis and developed pulmonary hypertension and passed away at the age of 31 and these can have genetic family links. Raynaud's and scleroderma are closely linked.

I'd appreciate someone talking to me about this as my anxiety is sky high and I'm not sure my GP would take me seriously.

@Nogodsnomasters Ha - I've still got to try and explain myself yet without sounding like I know better than the GP or am a complete hypochondriac the test I looked at was through medichecks with 20% off it was around £65 if I got a nurse friend to do it for me

@Redannie118, yes mine are raised, I have a couple of scars on my hand that I know about and they are white but completely flat, these are like little raised shiny white things - I'll try and get a photo tomorrow, also I have really itchy arms/hands/wrists which when I scratch I get lesions that take forever to heal, it's horrible

Really appreciate both of your replies

bettyshotpot good luck with your GP phone call next week, please keep us updated as to how it goes. You've done the hard part of requesting the appointment, now you know the call is coming you have some time to build up to how you want to explain yourself. ❤️

@Nogodsnomasters how are you getting on? I had the call with a GP today and basically garbled my way through it forgetting to breathe At first he said he'd just get me in for a rheumatoid factor test but then changed his mind to do an ANA test too so that's good, I've got to go in tomorrow for them. Guaranteed they'll be normal and I'll be back to square one with my various "ishoo's"

ENT consultant has also referred me for a gastroscopy to see if there is any cause for the reflux - I was supposed to have one 3 years ago but the appointment never arrived and I didn't chase it up.

So, that's me up to date, how's everyone else?

bettyshotpot I am glad you managed to tell your doctor everything and they took you seriously! Good luck with your blood test. Mine is next week but that is just for my liver function repeat, I never did ask for the ANA one, I never had the courage. My hands are still shiny, dry, see-through looking skin and I do still think about this illness but one of the other posters who had it really made me question it as I don't have the swollen stiff fingers and my reflux is mild not severe so that's a good thing in a way.

@Nogodsnomasters how did your test go, any further forwards?

I had the endoscopy, sedative didn't work so it wasn't pleasant, found a 3cm hiatus hernia. I'm awaiting a colonoscopy now (the fun never ends )

GP rang last Monday and was brilliant, he said he wanted to see me and to pop down that afternoon, we had a good long consultation and he agreed that my symptoms seemed to point in that direction (although he wasn't sure about the bloods). He sent me straight to get xrays of both hands, put a referral in to Rheumatology and prescribed cetraban for the itchy skin.

I rang earlier and the xrays are at the surgery but haven't been reviewed yet but hopefully I'll have some feedback soon - really need to know why my hand is curling as it's affecting work.

I'm glad to hear you're much further forward and have had your referral from a helpful GP! That's half the battle isn't it? I had my blood test and the results came back with my liver function in the normal range this time so they're happy to leave it now?

That's great that your liver was ok, I guess it's a waiting game now with your other symptoms. If the reflux carries on definitely go back, they might prescribe omeprazole to help. Still not heard about my xray results but the appointments team rang this morning to see which hospital I wanted to go to for rheumatology - it will probably be a while though as I know how stretched they are.