Brand new to this site and to this disease. Why are the two linked together in this site? Raynaud's and Scleroderma? I have scleroderma.

[Stotts]

[Grandma7]

same here..the raynaud's is connected to the scleroderma..there is two parts an in my case i have the CREST syndrome..a form of the scleroderma..there is alot to learn of this scleroderma..to bad not classses on it..

[Stotts in reply to Grandma7]

Thanks for the information. Will continue to study up on it.

[Papeena in reply to Grandma7]

Yes there is!! It took me 35 yrs to get diagnosed with MS, I also have Sjogren's, Lupus, Scleroderma Optic Neuritis and Sarcoidosis. Usually if you have one Autoimmune Disease..you get another or maybe 3 or 4.

This is true and you can educate yourselves and be your own advocate on Autoimmune diseases and how they are related to each other by going to this site aarda.org ...I am an advocate for.. "American Autoimmune Related Diseases Association" This is where to go for answers. You can also you tube aarda and watch video's of patients stories on how they were misdiagnosed. I hope that I have been of help to you all as it is my goal to educate others so they won't have to go through all the red tape and unecessary tests & Surgerys and be told that its all in your head...all because Autoimmune is not in the forefront..but if we all work together and come together then we can actually create a Chapter. Then the Pharmacy Companies will have to create a new drug for Autoimmune. If they find a cure for one disease, maybe it will cure all the related ones as well. Best of Health to all of you! xoxo

[MARCY in reply to Papeena]

@papeena, this aarda.org, is it looking for funding? Have you seen or heard of rctherapy.com...Dr. Hans Truesdell in AZ represents work being done for autoimmune and other health matters, cancer, diabetes...He has amazing results on alot. I've been in touch with him and one of his patients Cat Davis, she's on FB, not the Cat David Scleraderma Fund, but further down, just her out of Phoenix AZ. young girl very pretty, dark hair. She will tell you about her treatment and the drastic changes. The Dr. is looking with someone with Scleraderma willing to be a test patient for a vaccine...before you freak out, it is completely 100% safe and he guarentees results! It uses "peptides" and he'll explain why the drug compaies here will not allow the work. "Peptides" are a natural enzyme in the body, there is no pantent to be given, if they allow this to work here, the drug companies would be out of business. Just talk with him if you have an organiation with people who might be interested.

[JulieB in reply to MARCY]

This treatment you are on about in Arizona is not legal in the UK.

[Yorky]

Most people who have Raynauds do not have Scleroderma, but most people who have Scleroderma also have Raynauds.

[MARCY in reply to Yorky]

I definetly had raynauds which turned into scleraderma...4 years prior to being confirmed a scleraderma patient, I suffered with raynauds and had every test under the sun done to me, even a psych test! That needle test put into your nerves (OUCH), every EEG, EKG, every specialist...a Braccial Plexus surgery & Left Ulnar Nerve Relocation surgery too before I figured out myself what was going on by reading medical journals about autoimmune diseases. One of the hospitals mentioned I might have RA. So I'm not sure I agree with most people who have raynauds don't get scleraderma...everyone is different! Thats why it is so hard to pinpoint the symptoms for each patient!

[JulieB in reply to Yorky]

Yes i was also told the same when my daughter was diagnoised in 1995 with Scleroderma at the age of 4yrs.

[Whatever]

It's alot to take in when first diagnosed. I have Limited Scleroderma and secondary Sjogrens. For me when I had a name for what was making me feel so poorly it was a relief.Read up all you can-alot to learn about but every case is different

[lifeforce]

i think that even though all raynauds does not progress to scleroderma, many times it preceeds it.

[Stotts]

So are you saying that you usually get Raynauds before Scleroderma?

[Sienna]

My Raynauds showed up about a year before I was diagnosed with Scleroderma. I know that you can get Raynauds with getting any other disease, but most Scleroderma patients do have Raynauds.

[froggyjc]

From the Mayo Clinic Website : Raynaud's phenomenon. This condition occurs when small blood vessels in your fingers and toes go into spasms in response to cold or emotional stress, blocking the flow of blood. In most people, the skin turns white before becoming blue, cold and numb. When circulation improves, the skin usually reddens and may throb or tingle. Raynaud's phenomenon is often one of the earliest signs of limited scleroderma, but many people have only Raynaud's and never develop scleroderma.

Just because you have one does not necessarily mean you will have the other, but the two are commonly found together -- hope this helps

[Stotts in reply to froggyjc]

thanks for all the answers. I guess I need to study up on this a little more. When I was first diagnosed I did research it, but since the doctor says I do not show any SIGNS then I just put it to the back burner. MS seems to have taken over, but do want to learn more.

[Topmom52]

Much information to be found about Raynauds at the scleroderma.org website. When I tried to research Raynauds I did not find as much info available it I was diagnosed with scleroderma.

[Stotts in reply to Topmom52]

Thanks so much. I will check this site.

[Papeena in reply to Topmom52]

Go to aarda.org. You will find this site to be so helpful as it has Raynauds, Scleroderma, Sjogrens' and much much more! Good luck to you!

[MARCY]

Raynauds is usually the first sign you have this disease! But 14 years ago, I had to diagnose myself with medical journals, then took my symptoms to a county hospital (the 6th one) and was confirmed...Systemic Scleraderma!