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My rheumatologist appointment/capillaroscopy outcome

rheumatologist capillarscopy raynauds hashimotos scleroderma expert difficult diagnosis netherlands dutch

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#1 mystique123

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Posted 30 April 2015 - 09:27 AM

Hi all,

Two years ago I had my first Raynaud's attack, I must say it's been pretty mild so far. Soon after that I was diagnosed with Hashimoto's disease, and lately I have been having numb hands and feet at nights with severe night sweats so I went to see the doctor.

My rheumatologist did several tests and the results for kidneys liver etc is fine, also no inflammation.

However my previously negative ANA became positive.

After this I had a nailfold capillaroscopy which was good, not abnormal result.

Since I have been having a lot of symptoms I was wondering if anybody with primary Raynauds has a positive ANA, can this be possible? Or can Hashimoto's cause this?

 

How reliable is capillaroscopy, have you guys had it?

 

Doctor said I have to visit him every 6 months to see if sclero symptoms appear.

 

Thanks!!



#2 Joelf

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Posted 01 May 2015 - 06:04 AM

Hi Mystique,

 

Please note that I have no actual medical training, but I understand that generally speaking it's not usual to have Primary Raynaud's and a positive ANA. However, as we often reiterate, a positive ANA should only be part of the diagnosis process and used in combination with other tests and combined with symptoms that you are exhibiting, so a doctor shouldn't just run blood tests and leave it at that.

 

I've had a nailfold capillaroscopy, which involved painting my fingertips with a solution and then putting them under this rather natty little machine, which shows the broken capillaries in Scleroderma. However, like all tests, it should be used in conjunction with the clinical symptoms and other tests available, so that a complete picture can been gained.

 

Kind regards,


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#3 Amanda Thorpe

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Posted 04 May 2015 - 09:23 PM

Hello Mystique123

I'm with Jo, go on the symptoms. Over the years we've had many, many, many enquires about blood work and what it means for someone. On its own it can be as good as useless, in conjunction with symptoms and test results (as in capillaroscopy) it can help to diagnose and further categorise the type of scleroderma.

Raynaud's is, as you know, found either on its own or in conjunction with autoimmune diseases so it can be a significant maker but your capillaroscopy was normal.

Are you under the care of a scleroderma expert? See the link on our home page because this is your best bet if you're trying to establish what your actual diagnosis is. All I can do is share my experience and knowledge in the hope that it might lend you support.

When we're trying to figure out what's wrong with us anything and everything does not necessarily help to do so.

Take care and keep posting.


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#4 Shelley Ensz

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Posted 05 May 2015 - 07:38 AM

Hi Mystique,

 

Since many ANA's are false-positive, it is a good idea to really focus on the symptoms instead. Hashimoto's, Raynaud's, and numb hands and feet might be the sickest you ever get, or they might be the harbinger of another autoimmune illness. It's customary in this situation to get baseline testing and then to be monitored for awhile. I've heard of many people in similar situations monitored for even ten to twenty years and then, finally and mercifully, getting the "all clear". 

 

As I understand it, with a few symptoms of connective tissue disease and a positive ANA, your odds are about 50% that no other diagnosable autoimmune disease will ever develop. But, that 50% is a lot higher risk than that of a normal, healthy person. Further complicating your situation is that Hashimoto's (and Sjogren's) seem to be the key conditions that tend to set the stage for future autoimmune developments. Its not a certainty, more like just an increased inclination. (See Polyautoimmunity)

 

This leaves you in a delicate position. You might not ever be any sicker, so try to keep your head on straight that your future is definitely not all doom-and-gloom, but by the same token it would be an excellent idea to dutifully continue with your follow-ups until you are given the all-clear.  The only thing I would change is that if I were you, and if I were not already doing so, is that I would see if I could be screened and followed by a listed scleroderma expert, because odds are very high that your local rheumatologist is not adept or deeply experienced when it comes to scleroderma.

 

Scleroderma is a very difficult disease to diagnose, and doctors who are not extremely experienced in it can easily miss important clues. Furthermore, they can treat the illness either too aggressively or with way too little, way too late. 

 

Therefore, I would sleep a little better at night, knowing you have seen an expert.  I know its maybe a huge fuss about nothing, there's at least a 50% chance of that, and certainly, from what you've mentioned so far, it doesn't sound like you are in danger of getting diagnosed with anything (more than you already have), just yet and maybe not ever! But still, it's good to be on the safe side of things, don't you think?  Read more at Scleroderma Diagnosis.

 

Or, just sit tight with your local doctors but if additional symptoms develop, then hie thee to an expert.  But do put a listed expert on your radar, as it can take months to get in to see them for the first time and for most people it entails a trip out of state since real scleroderma experts are so very few and far between.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 mystique123

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Posted 05 May 2015 - 10:41 PM

Dear Shelley,

 

What a nice reply, thanks so much! You have been more helpful than any doctor I've seen so far..

I will look at the link and find an expert. You are right, doctors don't know it too well maybe they don't see many cases that's why. But I saw 3 rheumatologists and they all focused on joint pain for example, since I don't have joint pain they think I have nothing wrong with me. They focus more on RA or lupus I think.

 

I will check the experts in the Netherlands now. Many many thanks!



#6 Shelley Ensz

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Posted 06 May 2015 - 10:40 AM

Hi Mystique,

 

Did you happen to also see our Dutch pages?  Scleroderma patients without significant joint pain (which is common) frequently encounter rheumatologists who focus primarily on joint pain. Although scleroderma falls in the family of arthritis diseases like lupus and rheumatoid arthritis, and can occur in overlap with them, because scleroderma is so rare, the typical rheumatologist may only see one case in their entire career.

 

It's likely that their comprehensive training on it in medical school included perhaps five minutes on scleroderma, if they were lucky. The major exception is rheumatologists who were fortunate enough to train at a medical school which also has a scleroderma center. Although they may not "specialize" in scleroderma themselves, they are typically an improved patient resource. In really remote areas, or when travel to a scleroderma center is simply impossible, the best bets are the closest largest medical university, or a rheumatologist who happened to study at a major scleroderma center.  Luckily, with the internet and online listings of doctor medical histories, it is certainly challenging but usually not impossible to find the best scleroderma resource in any particular state or country, even if they aren't an actual listed expert.  But the safest bet is to go to a listed scleroderma specialist, whenever possible.

 

Be aware that *many* rheumatologists will list scleroderma as a specialty on their web pages, even if they don't have a whit of experience in it. This is because many web pages are automatically generated, and scleroderma is considered to be a form of arthritis, so web software (or webmasters) merrily toss that in. So, if they list it, you have to really dig to see if they actually studied at a scleroderma center, whether they are a part of any scleroderma clinical trials organizations, and whether any major scleroderma organization lists them as an expert.

 

Well now I've written a whole thesis on the topic of finding an expert, haven't I?  I'm sure it will help you a little bit, but I'm also hopeful it will help others who stumble on this thread, down the road.

 

Hie thee to an expert, Mystique.  Then you can rest assured that if you do have scleroderma, or early scleroderma, you can be properly monitored, treated (if necessary), and diagnosed (whenever it is appropriate).

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.





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