Research on Reynaud's and Scleroderma
 

As I've discussed, since July I've had to go to the ER quite a few times now for hardening of the muscles of my chest and upper abdomen, and difficulty breathing, with irregular heart beating and additional pain.

I was screwing around the Net and happened upon Reynaud's Syndrome, which some of us have with our TOS, and then saw that there is a relation to the disease of "scleroderma." The symptoms of scleroderma (slow diffuse kind) are uncomfortably close to those I've been experiencing. (Including the facial pain.) The majority of scleroderma patients also have Reynaud's.

Dr. Brantigan (when he examined me) said I had another disease process besides the TOS condition - that most likely it would not be identified but was causing inflammation and pain.

I am not going to diagnose myself off of the Net - but, I am going to later seek a second go-round with a rheumatologist, as the initial testing showed positive for one of three markers of an inflammatory disease.

I am sharing these links with you guys not because I think anyone has scleroderma, but, just to expand our understanding of TOS and Reynaud's, and Reynaud's and scleroderma...our generally "as good as doctors" research that we all keep doing as we seek some kind of cure or management of our TOS and its various symptoms.

Has anyone been diagnosed with Reynaud's? I will have to see my old reports - as my surgery helped remove most of the color change issues in my situation.

http://www.everydayhealth.com/public...=1&searchTerm=


http://www.everydayhealth.com/public...=2&searchTerm=

HI Tam,

I have also read in several thryoid articles that people with thryoid problems can also develop reynauds. They all seem autoimmune in nature.

A rheumy is a good idea. They can test for the scleroderma antibodies.

I have a good rheumy here in LA if you wnat the contact information.

I was diagnosed with Raynauds 30 yrs ago as a teenager! I've been very aware of this fact since I was 6 ,that my hands and feet were always cold. I used to bet my friends I could stand on the hot asphalt longer and win EVERY TIME! I actually have primary Raynauds but secondary Raynauds is due to scleroderma or other connective tissue diseases. I was partially tested for connective tissue diseases but not a complete full workup as my SED RATE was normal and the basic testing was as well.
So yes it does complicate having TOS but it's not the cause. It may put you at a higher risk for vascular symptoms, diagnosis of Vasc TOS or complications.
I would certainly ask the dr to run some labs. It would answer alot of questions and rule out any other possiblities.

Oh, I need to make clear a miscommunication here -

I never ever wrote that Reynaud's caused TOS.

I mention Reynaud's here only because there are more than a few people here who have TOS and also have Reynaud's. So when I read about the symptoms of the slow growing scleroderma, and my own difficulty in breathing, then I was shocked to read more on Reynaud's as 80% of scleroderma patients also have Reynaud's. (The links aren't working on my post, but that's some of the info. I posted.) (Reynaud's patients do not nec. get scleroderma though, the statistics do not reverse. The facts are that most Reynaud's patients do NOT get scleroderma - I read something like 5%.)

I believe that somewhere in my med reports there is a discussion of Reynaud's, and so I am somewhat concerned with this new symptom of difficulty breathing and hardening of the thorax area. I am hoping it is of no correlation to scleroderma, but, since I have already had some positive testing by my rheumy, I will go back at some point and be retested, especially if my symptoms increase.

I share this info. with folks only for interest...