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thickening raynauds ANA

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#1 mystique123

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Posted 09 April 2015 - 12:03 AM

Hi all,

 

I'm a 29 year old woman with diagnosed hypothyroidsm (Hashimoto's)

 

I have a few symptoms, although I have seen many doctors they tend to ignore me. My symptoms are:

 

-For 1 year already I have been having night sweats, got a bit better with thyroid medication

-Raynaud's (diagnosed) and chilblains in cold

-Numb hands and feet at night, or when I cross my legs etc

-ANA came always negative but the last one was 'weak positive' with all sub tests (ana panel) negative

-ESR and CRP very low

 

I have no fatigue, joint pain, swelling or stiffness. Doctors I've seen told me not to worry about weak positive ANA but I am worried.

 

I was wondering if those could be symptoms of Sclero? How were your test results? Anybody experiencing similar symptoms? 

 

Also what is exactly skin thickening, how does the skin look like when it's thickened. I mean the color of it, also I heard something like fingerprints wouldn't be seen anymore etc, can you please give more details?

 

Thanks!!



#2 Joelf

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Posted 09 April 2015 - 04:40 AM

Hi Mystique123,

Welcome to these forums!

I'm sorry to hear that you've been suffering with Hashimoto's Thyroiditis and have had some worrying symptoms.

I would explain though that although Raynaud's Syndrome is common to Scleroderma sufferers, it is quite possible to have this and never develop any further symptoms. The same appies to positive antibodies. Unfortunately Scleroderma is extremely difficult to diagnose correctly, not least because it can mimic many other diseases, manifests itself in many different ways and affects all sufferers differently. If you read some of the other threads on the Forums, you'll see that many of our members have been worried by similar symptoms to the ones you describe, so you're by no means alone in your fears.

I've included a link to our medical page on Skin Fibrosis, but would also point out that, although this can be a common symptom of Scleroderma, it is quite possible to have the disease but have very little skin involvement (I have Limited Scleroderma which has affected my lungs, but the only skin involvement I have are merely the tips of my fingers.) Of course some of our members do have extensive debilitating Skin Involvement, which illustrates how very varied this disease can be.

As you do suffer with another autoimmune disease (Hashimoto's), I would suggest that you go back to your doctor, with a view to consulting a Scleroderma Specialist, as this complex disease does require expert knowledge and expertise.

Kind regards,

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#3 quiltfairy

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Posted 09 April 2015 - 01:41 PM

I would definitely see a sclero specialist and not worry about symptoms that you do not have at this time. Your positive test could also be a false positive. I know it is hard not to worry; for me when I start to worry I can imagine all sorts of symptoms and things. I go to my doctor and find that nothing is wrong so I gave up worrying, it just makes everything worse .

Are you seeing a therapist? I do, it helps me to deal with all that is going on with my body. I have systemic scleroderma, but that is the most I can tell you; it took doctors about three years to come up with the diagnosis which is quite common as it is one of the most difficult diseases to diagnosis.

You are in the right place for support and let us know as symptoms change and any reports from your doctor. I will be thinking of you.

#4 mystique123

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Posted 09 April 2015 - 08:57 PM

Joelf, quiltfairy, thanks for your support!!

 

Yes you are right, I should see a therapist because this anxiety is killing me! It's been a year with so many strange symptoms and doctors are not helpful, my family, my friends are fed up and I'm having more and more complaints everyday.

 

The bad thing about living in the Netherlands is it's so hard to see a doctor, I went to my general practitioner several times and they don't do any tests. They don't transfer me to a hospital for a rheumatologist.

 

That's why I traveled a few times to see doctors, but no luck in terms of diagnosis.

 

It's been a hard year, although the idea of having scleroderma scares me, I will be relieved when I have a diagnosis. 



#5 Joelf

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Posted 09 April 2015 - 10:58 PM

Hi Mystique,

 

I can see that it must be quite a problem to get the correct medical attention; I'm in the UK and I've found that persistence is a necessity, even though we do have access to specialists and specialist hospitals.

 

However, in order to try and obtain a diagnosis and the correct treatment, I think you will have to pursue your doctor, as otherwise you may find that you're in a continual position of not really getting any further and that you're stuck in a sort of limbo. Being in a constant state of anxiety is not good either as autoimmune problems can be worsened by stress and worry (easy to say, I know! ;) )

 

Kind regards,


Jo Frowde
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#6 mystique123

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Posted 10 April 2015 - 12:08 AM

Thank you so much!

#7 Kathy D

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Posted 11 April 2015 - 07:37 PM

Nice to meet you :)

I was fortunate to have GP that caught the auto immune signs right away (severe fatigue, swelling, chronic fever, night sweats, and joint pain), but I was also a poster child for signs and symptoms at that time too... I should have gone earlier but I did not know any better. Glad you know what to look out for but rest easy, as you don't need to worry yet.

It was a very hard wait for my referral, then the wait for tests to come back after that, I think most of us here understand what you are going through, hang in there darlin' !

As you stated in your first post:

-For 1 year already I have been having night sweats, got a bit better with thyroid medication

-Raynaud's (diagnosed) and chilblains in cold

-Numb hands and feet at night, or when I cross my legs etc


Those are all good signs in my mind that you are not sick. You may never develop anything despite you bloodwork results :) Many women test positive but never become ill.


There are a couple hundred autoimmune diseases that can cause false positives for other antibodies, many never develop :)


I should also add I had 3rd degree frostbite and was diagnosed with chilblains a day later, and it was not, but instead Raynauds in cool weather. Not cold weather, but only cool weather.


I know this is a scary time for you, post here and we will help you through it!

Diffuse Scleroderma Diagnosed March 2009

#8 Amanda Thorpe

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Posted 12 April 2015 - 12:56 PM

Hello Mystique123

 

Welcome to the forums! You might find it helpful to have a look at our video series, especially diagnosis of scleroderma, symptoms of scleroderma and difficult diagnosis of scleroderma.

 

Night sweats is not a scleroderma symptom although Raynaud's is, that said the majority of people with Raynaud's do not have scleroderma although the majority of people with scleroderma have Raynaud's. Not everyone with Raynaud's have colour changes or have it severely. I have it mildly with cramp when cold being my worst symptom.

 

ESR and CRP measure inflammation and both being low means inflammation is low which is a good thing, as for ANA it is not automatic that people with scleroderma have a positive ANA. I have systemic and localised scleroderma with a negative ANA and some people with a positive ANA never develop scleroderma.

 

Symptoms are the key when it comes to achieving diagnosis of scleroderma with biopsy and blood tests as well as any symptom specific tests being used to support diagnosis and categorise the type of scleroderma.

 

Please keep posting and have a good wander around this rather splendid site!

 

Take care.


Amanda Thorpe
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#9 mystique123

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Posted 15 April 2015 - 11:52 PM

Thank you all! It's good that I get support here.

 

Today I finally managed to get a referral to a rheumatologist, finally!

You are all very right, so is my boyfriend, my family. Everybody's telling me not to worry until i get a diagnosis. I just developed a terrible anxiety in the past year due to increasing symptoms.

I will share my results here. Many thanks and stay strong.







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