5 posts in this topic

Hi. Autoimmune diseases run in my family. So after being diagnosed with Raynauds,fibromyalgia, chronic fatigue syndrome, IBS, arthritis, peripheral polyneuropathy, and a host of other disorders, it was not a surprise that my bloodwork came back positive for scleroderma antibodies and inflammation. My oral surgeon, who I am seeing for possible oral lichen planus, also viewed the initial results and asked if I knew I have scleroderma,

 

By the way, I have also started bruising quite easily and am very slow to heal.

 

My general practitioner sent me to a rheumatologist who repeated the bloodwork but also ordered other blood tests I do not understand. I viewed the results. The scleroderma and inflammation results are almost identical to the first time. However, I received a call from the rheumatologist's office saying that the results are negative for scleroderma but show inflammation due to neuropathy.

 

When I asked why these results rate as a negative but the same results from my general practitioner were listed as positive, I was told that false positives are possible and that I would be sent for x-rays.

 

Has anyone else experienced anything like this? Would you please share any insights, if so.

 

Thank you

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Hi Dbig,

 

Welcome to these forums!

 

I'm sorry to hear that you have so many health problems with autoimmune diseases in your family. I've included a link to our medical page on Antibodies which I hope you'll find helpful and informative. Also I would add that as Scleroderma is such a difficult disease to diagnose, the diagnosis should really be made on the clinical symptoms and the results of more tests, rather than blood tests alone. The reason being that it is perfectly possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. I'm afraid that with Scleroderma, because it has so many different idiosyncrasies, the road to a correct diagnosis can be lengthly and rather frustrating.

 

To give you some more information I've included links to two threads on Positive antibodies and False/Postive ELISA test. We also have a wealth of information to help you with your other health problems in our Medical Pages and our Video Series.

 

Finally, we do recommend that, if possible, our members consult a Scleroderma expert, as this complex disease does require specialist knowledge and expertise.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Dbig
 
Welcome to the forums. Slow healing is not, I think, automatic in scleroderma but as the follows says, depends on the individual:
 
"They used to advise all scleroderma patients to avoid surgery whenever possible, due to concerns about wound healing. Now that is not a blanket recommendation, but rather is an issue to be considered on an individual basis." 

 

What is accepted is that stress impedes wound healing, have a look at our emotional adjustment page, it's full of good advice.

 

I am not aware that scleroderma itself causes bruising but morphea plaques (a type of localised scleroderma) can look like old bruises.

 

As Jo has already said diagnosis of scleroderma requires more than positive blood work, have a look at the list of systemic scleroderma symptoms, mind you many of them may be similar to those cause by your existing illnesses.

 

Should you have scleroderma, it will be an overlap disease which means you won't get the full spectrum of the disease but some of it which is a positive.

 

Let us know how you get on and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you so much! I appreciate the welcomes, links, and inputs you shared. I truly hope you get as much from as you give to these projects. I have been reading the forum posts and see a lot of responses from you.

 

Again, thank you.

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Hi Dani,

 

Welcome to Sclero Forums!  I'm sorry you are sick and have questions regarding diagnosis.  As the others have mentioned, autoimmune diseases and scleroderma in particular can be very hard to diagnose.  Typically people are followed by rheumatologists for many years before the diagnosis is nailed down.  So my question is, did the rheumatologist ask to see you again, or are they still in the process of running tests (for this round)?

 

When there appears to be something autoimmune going on, but it is uncertain or in the initial stages, they often recommend follow-up in perhaps six months or a year. They assume of course that you will see your primary care doctor if you develop any new or worsening symptoms in the meantime.

 

Yes, there can be false positive tests. But educate yourself on the most telling symptoms of various autoimmune diseases, so that you can get a second opinion from an appropriate expert, if you have sound reason to believe your local doctors are missing the boat, which unfortunately is all too common with rare diseases (like scleroderma).

 

: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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