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Being My Own Advocate


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#1 Tammy

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Posted 20 August 2007 - 04:01 PM

I know that my rheumatologist appointment isn't for another month but I am trying to learn as muh about this as I can before then. I can't tell you all how much help you have ALREADY been. I have another question: Is Raynauds ever JUST Raynauds, no link to other problems? As far as I can tell right now that is my main link to scleroderma I think. Does the extent of the Raynauds mean anything, like if it affects the hands and feet, some skin tightening and thickness on the hands?


Thanks AGAIN everyone!

Tammy

#2 janey

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Posted 20 August 2007 - 05:06 PM

Tammy,
You are so right to be your own advocate. No one cares more about you than YOU, so always look after yourself.

Yes, Raynaud's can be just Raynaud's. The following is from our page on Raynaud's.

When Raynaud's appears by itself, without any other medical condition, it is called Raynaud's Disease. About 1 in 20 adults have primary Raynaud's, whereas only one in 4,000 have Scleroderma. When it appears along with autoimmune diseases such as Scleroderma, Systemic Lupus Erythematosus, and Rheumatoid Arthritis, it is called Raynaud's Phenomenon (or, Secondary Raynaud's.)

The extent of Raynaud's can be due to the amount of vascular involvement and the degree of involvement. During the first couple of years, only my hands were affected, but as my scleroderma progress so did the Raynaud's. It's now in my feet.

Hope this helps.

Big Hugs,
Janey Willis
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(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Margaret

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Posted 21 August 2007 - 03:52 AM

<<About 1 in 20 adults have primary Raynaud's, whereas only one in 4,000 have Scleroderma>>

Hi Janey ,

I thought I read last fall, when learning about Sclero, that 1:10,000 people have Scleroderma.......or is that 1:10,000 for sine Scleroderma? Just curious.

Take care, Everyone.
Margaret

#4 nan

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Posted 21 August 2007 - 04:59 AM

Margaret,
I think that Janey was referring to how many Raynaud's patients have scleroderma.
Nan

#5 Tammy

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Posted 21 August 2007 - 12:35 PM

Thanks janey for the link, it was very helpful! I also found a site, Raynauds Association, through that link.

Does anyone know if there is a connection between Raynauds and varicose and spider veins?

Thanks
Tammy

#6 Michelle2

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Posted 27 August 2007 - 10:14 AM

Hi Tammy~

I haven't heard or read anything linking them together. I am new to all of this too and I am glad to see you being on top of it as far as your dr's appt goes. I'm doing the same thing.

This site is GREAT!
Take care and stay warm,

Michelle

#7 Tammy

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Posted 27 August 2007 - 01:25 PM

I am thinking about cancelling the appt. with the rheumatologist, I really don't think that I have scleroderma or any other autoimmune problems. I have had raynauds for about 15 years so I think that it would have progressed by now. Any of the other symptoms I think I can relate to other problems, I had a pituitary tumor removed (with some damage to the gland) when I was 17 and I think that alot of the problems stem from that. I have had colitis since before the raynauds, so the IBS was really no suprise, as for the SOB, I have asthma. My husband agrees with me, what do you all think? Did you go through this back and forth thing too?

#8 truman

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Posted 27 August 2007 - 02:57 PM

Tammy:

I started with raynauds on my younger son's 10th birthday. Was tested for everything with no connection. A young doctor diagnosed me with scleroderma and I could find very little info on the internet except for bits and pieces of what appeared to be a rather dismal future. I ran from that diagnosis for 16 years as the raynauds progressed from my feet to my hands; generally out of control. Different symptoms of scleroderma appeared, separately and apart from any true diagnosis and I never confided in my doctor of the past diagnosis out of fear of reality. Even to this day, when an ortho doctor diagnosed me with CREST, I ran until I found a doctor who did not diagnosis me with anything and confounded called me the "mystery person". It was a neighbor who is also a nurse who apparently recognized the symptoms and convinced me to see her rheumatologist. It took one look on the doctor's part and a series of blood tests to confirm what I was running away from. I lost my sons in the process as they have moved out and will not communicate with me or tell me where they live; I believe it is due to the extreme fear I felt at first. I have since began sessions with a psychologist in order to cope with this confirmed diagnosis in addition to the loss of my sons. The light at the end of the tunnel is that my doctor is convinced that it is limited CREST and the damage presently confined to my right arm. Please don't cancel any appointment because raynauds can appear years before the onset of the disease. Get an ANA test to be positive. I am content now, obviously because of the limited area involved, but you, without any present symptoms, have an early start on preventive measures.
Tru

It is what it is...........

#9 janey

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Posted 27 August 2007 - 04:28 PM

Margaret,
Sorry for the confusion. Nan is correct, the article is stating that 1 in 4000 people with primary Raynaud's has Scleroderma. The ISN Raynaud's page states that 90 to 95% of people with scleroderma have Raynaud's.

Tammy,
Unless you can't afford it I would keep the appointment with the rheumatologist. You mentioned that you have colitis. Here's sometime I found on WebMD about ulcerative colitis.

The cause is not known. The immune system may overreact to normal intestinal bacteria and cause inflammation. Or disease-causing bacteria and viruses may play a role in triggering ulcerative colitis. In a small number of cases, ulcerative colitis is believed to run in the family.


This implies that is could be an autoimmune disease; therefore you could have something autoimmune going on. The best person to identify or cancel this out is a rheumatologist. It nevers hurts to have another doctor look at you. It's like that second set of eyes that we need at times.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 jefa

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Posted 27 August 2007 - 09:09 PM

Ah, yes. Reading through this thread, I had formulated an answer which was almost word for word what Janey advised. She gives good advice. The name is not important as long as you are getting treatment. Whether your individual symptoms are part of the scleroderma package or from separate causes, a rheumatologist is the best person you can continue to see for treatment if you can afford it. Keep in mind that a positive ANA or the absence of one is an indicator, not a definitive test. Hugs to you all.
Warm wishes,
Jefa

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#11 Michelle2

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Posted 28 August 2007 - 07:56 AM

I agree, Don't cancel your appt. You can never be too careful!

Keep us posted!
Take care and stay warm,

Michelle