Is diagnosis important?

[KristinaD]

Hi, I have only just realised that I have raynauds after going to the Drs with lesions/ulcers/something on the tips of my toes. They had no idea what was causing it and mentioned raynauds in passing when I said I have poor circulation. After looking it up I have realised that my symptoms are consistent with raynauds. Im now waiting for a dermatology referral, but Im worried, having read bits and bobs, that whilst im waiting my toes are simply going to get worse and worse. Has the Dr done the right thing by getting a dermatologist involved or should I be going back and asking for a raynauds diagnosis?

Any advice would be appreciated,

Kristina

[Hidden]

I think you need a rheumatology referral rather than dermatology

[Monika]

Hi Kristina, I agree I think you should ask to be referred to a rhumatologist. All the best and sending lots of healing thoughts X

[judyt]

Definitely a Rheumatologist and preferably a Scleroderma expert. You won't necessarily have Scleroderma but I just know that I had Raynaud's (I thought - ha ha ha)

for 30 years before anybody thought of anything else.

[cleoshome in reply to judyt]

I know right. If you and I only knew what was coming. I always wanted the best and I got it. I have the crest form of systemic sclerosis scleroderma. Yah!! and ha ha. my name is michelle nice to meet you.

[Yorky]

Hello, I was referred to a dermatologist over 30 years ago, he knew a lot about Raynauds. What you need is a diagnosis of primary or secondary Raynauds. If it is secondary then you should be referred to a rheumatologist, preferrably at a specialist centre. Hope this puts your mind at rest a little.

[xshazx66 in reply to Yorky]

Hi Yorky, I've never been told whether my raynauds is primary or secondary thankfully I don't get lesions or ulcers, what difference does it make if it's primary or secondary, ps everything else like the fibro, cfs etc has followed that diagnosis, and just the raynauds in fingers at start now it also affects toes xx

[Yorky in reply to xshazx66]

With primary it is just the Raynauds symptoms. With secondary it is part of an autoimmune condition and can effect all part of the body - swallowing in particular, but also lungs, heart, joints etc. I have scleroderma, so my Raynauds is secondary. It is usually determined by blood tests looking for certain antibodies, I have anti-centromere which is usually linked with the limited type of scleroderma.

[xshazx66]

Ok, thanks, so that's why I had to have MRI, and have also had lung function tests and

a million blood tests

Thank you xx

[zenabb]

You are right. Go back as soon as possible and ask to be referred to a rheumatologist as soon s possible.

[KristinaD]

Thank You all, this is really helpful. I will contact my Dr sharpish. It's a little overwhelming reading all this info when Ive spent my life thinking I've just got cold hands and feet, but as far as I'm aware my immunity related blood tests have come back normal so fingers and toes (ulcers and all) crossed it shouldnt be too complicated. Thanks again,

Kristina

[Hidden in reply to KristinaD]

There's a test called nail fold capillary where they look at your fingertips under a really strong microscope that usually gives a good indication of if the raynauds is primary or secondary (the tiny blood vessels in the nail bed look different - more scribbly if it's secondary. The other difference is with primary raynauds the capillaries constrict and restrict blood flow but once the attack ends they return to normal, whereas secondary raynauds each construction damages the capillaries and so the blood supply worsens - that's why you see ulcers because the extremities have much less blood flow to bring antibodies/white blood cells/platelets to the area to clear infection and close wounds. The thing about antinucleaic antibody (ANA) blood tests is they can tell you if you do have an autoimmune disease response happening but can't tell you if you don't: I.E a positive is a yes and a negative is a "dunno".

The raynauds and scleroderma website (scleroderma society and raynauds association just merged I can't remember what they go by now) has a brilliant website and loads of information and whichever you have there's medications to try and lots of support and positive things you can do you're on the right path and we're all here to help steer you the quickest route to help! good luck x

[KristinaD in reply to Hidden]

Ok this is interesting, although confusing. I have returned to the Dr and based on normal bloods they have dismissed secondary and stuck with a dermatology referral. They didnt feel a rheumatology referral was needed. Which is reassuring....just hope my toes dont get worse. Thanks again,

Kristina

[cleoshome in reply to Hidden]

scleroderma foundation website. and I agree with the dunno.

[cleoshome]

No, you can actually lose your toes and your feet due to raynaud's. You must get to a rheumatologist immediately. As a nurse and someone who deals with it and worse things. If you cannot get help there ,change doctors. Amputations are common when you lose the circulation in your feet, your hands and even your nose with raynaud's. Lesions or ulcers are an immediate risk. It is an autoimmune disease not a skin disease. Your doctor is wrong I urge you to seek help right away. Go to a different clinic whatever it takes. if you can access the scleroderma website you will find out about raynaud's and other diseases it can lead to. My name is michelle I am in kansas city, missouri (USA)

[KristinaD]

Thanks Michelle. I am now even more confused....the black flesh that has been on my toe for a few months has fallen off after I competed in cross country this weekend. It got covered in mud despite me trying to protect it, and whilst i was rubbing the mud off with a towel, the 'dead' flesh came away. How is this possible? This makes me think that it wasn't an ulcer/lesion/dead at all, but something less sinister. What do you think?