Been to rheumatologist

[Tay171]

He says he is 100% sure I don't have scleroderma or lupus and that my raynaurds might go away? Or it's a form of raynaurds where my hands just stay red . After effect of bad viral infection. Ofcourse I didn't believe him I'm still convinced something is wrong getting ANA blood test

[gindy]

Hmm, Raynauds doesn't just go away. There are quite a few reasons you could've been told you've got Raynauds but was misdiagnosed. When was your initial Raynauds diagnosis?

Why do you "of course" not believe your rheumatologist? If it'd have been a gp I could agree, but there's no reason a Rheumy would say it's not Raynauds if it was...

Odd, yes I find it very odd.

[Tay171 in reply to gindy]

He said its raynaurds and I accept that but I think there's something more going on but he thinks it's normal.

[Kingfisherblue]

Hi Ct17

I didnt think Raynauds goes away. It get milder and stronger to the time of year and weather. Worse in the winter. It sounds a bit like myself.

I have had raynauds most of my life but caught a very bad viral cold and flu infection five years ago January. This triggered my Scleroderma off.

Really start to keep a diary of your symptoms every day and how you are feeling. Every ache and pain your hands etc., Watch your feet too.

good luck. See if you can go back to your doctor if they symptoms get worse.

Liz

[dianekjs]

You're being evaluated for an autoimmune disease and haven't had an ANA test yet? What labs have been done? As others have correctly stated, true Raynaud's doesn't go away. Red hands are also not enough to diagnose Raynaud's, white fingertips with transitions of blue/purple would be more characteristic. Do your fingers hurt and get icy cold? Do you have other symptoms? Your rheumatologist should have explained that there are two main types of Raynaud's, primary and secondary. Primary is more common and less serious- but certainly not common. It is often mild and doesn't involve other conditions. Secondary Raynaud's develops as part of another autoimmune disease such as scleroderma or lupus and can be serious, very painful, and can compromise your fingers.

Request an ANA test but insist that it be done by the IFA method, which is far more accurate and is considered the gold standard. ANA testing done by ELISA or multiplex results in over 40% false negatives. Best of luck in figuring out what's going on and I hope you feel better soon.

[Tay171 in reply to dianekjs]

He said my raynaurds looked normal and that he's sure I don't have scleroderma but lupus could. Be possible . I give him a list of my symptoms literally so many and he still said the same thing. I went private and is one of the best where I live apparently . He just told me to ignore it basically and that it'sjust something I have to live with . I'm seeing another private one in Scotland and have a NHS appointment too I just don't feel right

[Tay171 in reply to dianekjs]

Also said it I as a type of raynaurds beginning with E I feel like I should have taken notes . I'm just 21 and have no one but myself so it's hard and I'm confused

[dianekjs in reply to Tay171]

Erythema is a reddening of skin, likely caused by dilation of the capillaries, but it's not a type of Raynaud's. I support your decision to get a second opinion from another rheumatologist. Once again, request that an ANA test be done and be absolutely sure they use the IFA method. It baffles me that your doctors to date haven't already done this. And yes - take notes, and ask for copies of any and all test results when done, you are legally entitled to them and should keep them in a medical file of your own. Best of luck to you.

[Tay171 in reply to dianekjs]

Thank you for the advice . Really appreciate it . I'm going to start taking control of this and get some sort of answer .

[Tay171 in reply to dianekjs]

Erythema is exactly what he told me I had . Iv just searched it and it's scared the hell out of me. Iv just got over a viral infection and my lungs hurt as well but he didn't seem too worried .

[dianekjs in reply to Tay171]

Erythema shouldn't scare you to death, it's a very general term - kind of like inflammation or swelling. For example, any time you have an injury to the skin and the area reddens, that's erythema. It's just an inflammatory response to any number of things that results in redness to the skin. It's not a diagnosis of anything specific or anything dire. Go get a second opinion for peace of mind and get some blood work done. And try not to stress so much, it may turn out to be nothing serious at all. Stay positive.

[Hidden in reply to dianekjs]

Sorry to hijack this post but I'm wondering how a person finds out what method an NHS hospital lab uses to test ANA? I didn't even receive my lab results but asked the GP for a copy of the specialist registrar's letter and it just said +ANA 1:320, negative ENA. I then asked a locum GP if this had a pattern and she looked it up and says it was nucleolar and thought that was more indicative of Scleroderma and asked if I'd ever heard of this disease. Yes I've been thinking I have it for a few years now. Previously my ANA was negative and equivocal but I've never seen a break down of this from a lab let alone know what method they use to analyse these samples. It is a large teaching hospital lab - a different hospital to the last one. I was previously on steroids or DMARDS when tested and I think this must explain my previously negative autoantibodies.

Ct17 - I suggest wait to see what your ANA comes back as but ask for a second opinion. But be aware that rheumatology is a very inexact area of medicine and even experienced consultants can make mistakes. But it is more probably that they are right as they see these diseases day in day out.

You may be better off sticking with NHS consultants fir continuity and not worry too much because Raynauds and erythema are not the same as Scleroderma. The best test for establishing whether you have primary or secondary Raynauds is the nailfold capilliary test I believe - a simple noninvasive test. Perhaps the next rheum will suggest it for clarrification.

[dianekjs in reply to Hidden]

If your ANA result was 1:320, it was run by the (correct) IFA method, so that's good. An IFA result will be expressed as a titer such as 1:160, 1:320, 1:640, etc. Staining patterns can be quite subjective and unreliable, so what you need at this point is specific antibody testing. If you have a possible nucleolar pattern and symptoms that are associated with scleroderma, then you should start with antibody tests for centromere, SCL-70, and RNA polymerase III as they are the most common. If they are negative, there are additional less common antibodies that can be tested.

Steroids and DMARDs won't significantly alter a clearly positive ANA, but if you have a disease that was in early stages when first tested, the ANA titer could still have been weak before the condition fully manifested.

[Hidden in reply to dianekjs]

Thanks for this information. Unfortunately my ANA wasn't tested when my symptoms began six years ago. My rheumatoid factor was a weak positive and ESR very high with bilateral joint pain. I was diagnosed with seronegative RA and put straight on Methotrexate and steroids.

Now the senior specialist registrar in a different hospital says my ENA pannel is negative but at the rheumy's request I had a lip biopsy and that came back very positive for Sjogrens. He said my RA diagnosis was probably wrong.

Confusing!

I have just started Mycophenolate Mofetil having failed to tolerate four other disease modifying antirheumatic drugs. I get a trial of four months to see if it helps. My main symptoms are neuropathic - very MS like - which is the Sjogrens I'm told - and there's no treatment apart from the Gabapentin family which I also failed to tolerate. I'm told that by now I'd have clear signs of Scleroderma but I only have mild Raynauds, GERD, constipation, tinnitus and dizziness and some telangectasias on my face and hands. Plus the neuropathy causes a sensation of tighness in my gums and lips and nose. No digital ulceration or calcium deposits or organ involvement bar a very large kidney cyst and microscopic haematuria yet so I may be barking up the wrong tree wit Scleroderma However the pattern was clear nucleolar rather than possible and the hospital lab is apparently very reliable as its part of a big university with lots of research. Also the previous hospital lab found a weak positive ANA a few years ago with same nucleolar pattern so can't be coincidence.

My first rheum said that Scleroderma can develop very slowly and couldn't rule it out as a possible mix with RA/ Sjogrens so it could still be developing or be mild I'm guessing? This is why I wanted to try the Mycophenolate.

[Tay171 in reply to Hidden]

Iv started to have neuropathic symptoms muscle twitches all over and Shakey hands but he put this all down to after effects of viral infection . I'm also seeing a CBT for bad anxiety though. I'm not sure what is causing what

[Hidden in reply to Tay171]

Ah that's so difficult because stress and anxiety are so bound up in all our symptoms. You aren't alone. My middle son is 21 and is often worrying about his health, although I would say he's quite a happy chap on the whole. He's prone to swollen lymph glands and tonsillitis and these seem to trigger lots of aches and pains afterwards which in turn cause him panic attacks. He's had the paramedics out once for this. Nothing shows up in tests apart from swollen lymph nodes which he's told are just age and lifestyle related. It's a circular thing and we are all like this so don't worry - autoimmunity plays havoc with the mind as well as the body.

Be sure to ask the doctors to get your thyroid and B12 levels checked thoroughly. Hugs, Twitchy

[florr in reply to Tay171]

My niece was 15 when diagnosed..i have 2 brothers with it ..and myself got it at age 55..hereditary..seems to be there..but being in the cold..too..i cope but heading for a warmer climate is the best i can do for myself..