New to group.....Hello🙋

I've got hives on my chest at the moment, and I'm tachycardic due to taking a supplement that's derived from wheat but it didn't say that in the item description!

I've never heard of systemic sclerosis but I've got chronic fatigue syndrome, dizziness, digestive issues. I've had an operation for a duodenal ulcer.

It seems like it's something I should learn about. Thanks for posting this discussion Modlar; I hope people who're knowledgeable about this post some useful replies. 

Same here! All I want is a diagnosis and in my experience even the specialist are not 'specialist' enough!

I was given naproxen which made a massive difference to my symptoms. I can't have naproxen at the moment because I have stomach ulcers. But my fatigue and other symptoms are back making it difficult to go to work.

Naproxen reduces inflammation. ....the pain and swelling In my joints/particularly hands and feet.

I have not been told why I have these symptoms. ...the rheumatologist has ruled out rhumatic conditions and autoimmune based on blood tests .

my question is if it's not autoimmune that causes inflammation and no obvious injury then what does?

I say get a second opinion. Even ask the Doctor if they ran the test for igG4. The reason I initially went is the lymph node in my neck was swollen to a quarter size. My primary sent me to an ENT...that started the quest. But I will tell you I had 2 needle biopsies, tons of blood drawn, CT scans, MRI and they eventually had to remove that lymph node that after 5 years to the size of a large jalapeno. Still nothing, then my Rheum. The disease is rather new in the discovery. Your Dr may just not be familiar.

Here's my thing (forget this specific disease), how do you get doctors to run the right tests?? I had a positive ANA (low titer) and a positive RF. So my doctor tested me for an abnormality that only shows up in RA. When that was negative he basically wrote off the possibility of anything autoimmune other than Fibromyalgia and is sending me to a cardiologist even though I have so many symptoms of an underlying autoimmune response. 🤔😕😑

Hello Diana,

thanks for your input.

I've been reading a lot about Systemic Sclerosis recently, and even though my bloods were negative it's not always conclusive....apparently there are other tests ie skin biopsies etc that can flag up specific changes.

I wouldn't be as concerned if ...my nailfold capilliaroscopy came back ok, but it didn't. ...it showed damage to one of the fingers cappilaries - when I research this online it was used to differenciate between raynaud's on its own and raynaud's connected to autoimmune disease - that being specifically scleroderma.

The skin on my fingers is slightly thickened /waxy in texture, red and white knuckles / fingers and I have a slight lump developing under the surface on one of the fingers.

Systemic Sclerosis, I believe can affect one, or a multitude of organs. I have had chronic 'ibs' type symptoms for well over a decade. And have more recently been experiencing shortness of breath.

Could it be that I have the early signs of this disease that has been developing in my system over many months /years?

What I do know for sure is that the naproxen relieved my symptoms dramatically and no doctor has yet explained why that is the case.

Thanks again for your reply.

I would write down all of your symtoms that concern you.

research what that might be the cause of...

go back to Your GP and ask for those specific tests.

because you have a right to do that.

Also see if there are any correlations with any of your symtoms on this site with others. ....what are your main symptoms that concern you?

Hi LeShawn, sorry to hear you have that diagnosis.

I had a quick look online as It hadn't come to my attention previously, however it did sou d familiar when I was researching systemic sclerosis.

It does sound similar.

Now that you have a diagnosis are you recieving treatment?

If so , is it helping ? Reducing your symptoms?

Best wishes

Yes! I am getting the help I need. It's been going great for the first phase. The next phase is challenging because the next step is a new treatment and of course the insurance is wanting a types of backup before they pay. And TY, I am blessed to finally have a diagnosis,.