How long did diagnosis take?

[unebaguettepastropcuite]

Just that really.

I know I have something. Raynaud's is confirmed, but I also have mild kidney failure, inhanced risk of blot clots, joint pain, fatigue.

So far have been sent for bone scintigraphy and capillarscopy. Capillaroscopy showed nothing unusual, don't have the other results.

Specialist seems to be pushing for sclroderma, but I don't think I fit the symptoms. Could he be trying to rule it out?

Does anyone have extreme reactions to mosquito bites? Because I do and they have told me I am definitely not allergic. Wondering if it could be linked to the auto-immune stuff.

Thanks!

Hi again Unbaguette

Can I ask what’s made your specialist think that it’s Scleroderma? Are there skin findings that point to this?

I’m not a doctor but with your blood test results, the Raynauds, kidney involvement, clotting issues and joint paint I would say points more to Lupus. Although I do know that it’s not a diagnosis that they rush into and they will rule out all the other autoimmune conditions too.

I was very lucky in the fact that I had a Malar rash when I saw the Rheumatologist as well as typical clinical findings of Dermatomyositis so my diagnosis was made on my first appointment, but they still wanted to rule out all other CTD’s as I also had Raynauds and swollen joints and it’s possible to have more than one.

Hopefully when you next see your Rheumatologist they’ll have some answers for you. At the very least it sounds like you need to start some sort of treatment for the joint pain and fatigue. Have a list of questions with you and don’t be afraid to ask!

Hi somewheresorted,

Thanks for replying. I have no idea why the specialist was leaning towards scleroderma, maybe the fact he noted I had poor peripheral circulation? He kept asking if I had heartburn or problems swallowing, which I don't.

My physical symptoms also make me think Lupus. I get a rash on my face which I managed to take a picture of earlier this week and I am drawing up a list of random symptoms I have, to discuss next time I see the specialist.

I actually see him again at the end of next week (not in the UK, so no long wait). This time, he'll have the results of my tests.

If the joint pain (feeling like I'm 100 years old) could go away, I'd be thrilled. He did mention Plaquenil as a possible treatment, but wanted to have test results first.

Sounds like lupus to me too. Have you had the dsdna blood test?

You don't want to know how long it took me to get a diagnosis, but you are quite far along the path now.

Well, I saw the specialist last week and although the scintigraphy showed some arthritis in my shoulders and thumbs he said that, given my symptoms are mild and that the ANA and ACA were discovered by coincidence (during testing for allergies), there is no need for any treatment at this stage.

I don't know what the DSDNA test is. I'll look it up.

Many thanks!

Rashes, peripheral poor circulation, joint pain, kidney involvement and blood clots could also be vasculitis - have you had a ct scan to rule that out!

I have kidney disease and react badly to insect bites, just in case that leads anywhere! No diagnoses beyond the kidney disease though...