Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Any Sines Out There ?


  • Please log in to reply
10 replies to this topic

#1 gemma

gemma

    Newbie

  • Members
  • Pip
  • 4 posts
  • Location:uk

Posted 24 June 2007 - 04:12 AM

Hello all,

I am brand new to this site - I wondered if there are people out there who have the sine form of sclero, and what their experiences are?

I have no diagnosis - after 5 + years! - but like a lot of people, I didn't know anything about sclero until now, so I was probably not asking the right questions.

I have had Raynaud's ever since I can remember. It was odd, but never bothered me that much, and I never went to a doctor with it. Except for that, and a big pollen allergy, I was pretty healthy. In my thirties I started to get spider naevi on my face - again, I just thought - getting older ! covered it up with makeup. Then I had a big trauma, 5 years ago and it all began. The symptoms are so many it is best just to say I got seriously ill for the first time in my life. Blood tests came back okay. Was fobbed off with the usual - female/stress/anxiety/
Well, they know best, or do they?

Had a blood test done 3+ years ago, and the exact same test 1 month ago,at the same lab,ordered by the same general practitioner. I had already been ill - couldn't swallow/eat/etc for 2 years when I had the first test. It was pretty okay though.

I have had to be very careful with diet, and everything in between. Yet the new test shows - sky high BP [all my life low] SED rate 17, white cells doubled, CREATININE CLEARANCE figures bad.

In other words in the last 3 years the tests show this is a person getting pretty ill. Still can't get any sense out of doctors, but having found this site will now be pushing for some kind of work up for sclero one thing I discovered here I found curious was info on SILICA - I am not aware that I've ever been exposed to it in any obvious way, but early on, years ago, I tried homeopathic silica - one tiny pill - and had a violent allergic reaction to it. Anybody else any thoughts on silica?

Good luck to all,

Gemma

#2 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 24 June 2007 - 05:10 AM

Welcome to the ISN Scleroderma Forums, Gemma. I am sorry you have had so many problems, but glad you have found us. This is a great place for exchange of ideas and mutual support. To answer one of your questions we do have at least one 'Sine' and I am sure she will add her welcome soon.

Have you seen a rheumatologist yet? Hopefully this page detailing symptoms will help you sort out a diagnosis with your doctors:

Systemic Scleroderma Symptoms: Main Page
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 24 June 2007 - 06:10 AM

Hi Gemma ,

Last November we found that my son's esophagus had stopped working/pushing food into the stomach. His gastric doctor recommended followup blood work which showed positive ANA, positive Anti-RNA Polymerase 1/111, and a high sed rate - 93. He was very tired and had lost a lot of weight since that summer. His rheumatologist said 'sine scleroderma' but the doctor in Pittsburgh said UCTD since he has no Raynaud's or skin issues. Last month, I heard from Pittsburgh that Dr M was calling it sine scleroderma....he's only had 2-3 cases. He has major gastric issues and mild restrictive lung disease. Gareth is only 19 years old.

Take care, Everyone.
Margaret

#4 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 24 June 2007 - 06:25 AM

Welcome,
My rheumatologist says that I have CREST/Limited Scleroderma sine scleroderma. I was just diagnosed in December 2006. If you would like more information you can email me if you click on my name email will come up or message me through forum.
Nan

#5 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 24 June 2007 - 11:57 AM

Gemma,
Welcome to the forum! I'm sorry that your symptoms have been adding up over the past few years and that your doctors just can't seem to find the problem. That's not unusual. Scleroderma and many other autoimmune diseases are very difficult to diagnosis. It's up to you to hang in there and be persistent on getting the right tests done, keeping track of ALL your symptoms and letting your rheumatologist see the list and studying. Many of us actually knew what we had before seeing the doctor. Have you had your ANA checked? It's another bloodtestthat provides a strong indication that an autoimmune disease is present. However, some of our members definitely have sclero with a negative ANA. I have systemic scleroderma and the only skin involvement is some on my fingers.

You asked about silica. I handled silicon wafer from 1986 through 2003. For years, I would purposely break them to show my students the crystalline structure of the silicon. Lots of silica dust as a result. We have a page on silica exposure if you're interested in reading more about it. I do feel that it contributed to my disease but I also feel that hormones played a big part since I started developing symptoms when I was perimenopausal. Unfortunately, I'll never know, but I do stay away from silicon wafer now. Also, some cat liter contains silica, so if you have cats - check the ingredients.

Please keep us informed of your tests and just how you are doing. It's a great group here - lots of experience and support.

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)

#6 Guest_Sherrill_*

Guest_Sherrill_*
  • Guests

Posted 24 June 2007 - 03:47 PM

Gemma,

Welcome to the Forums!

I am particularly concerned about the fact you have sky high BP, and also have bad creatinine clearance. Both these things point to your kidneys possibly being involved. I would urge you to see a nephrologist as soon as possible!

Very high BP can be a sign of scleroderma renal crisis, which can be managed successfully, as long as it is treated promptly.

I have had diffuse systemic scleroderma for over 10 years now, and have had kidney failure with dialysis for over 6 years.

There was another message thread about kidneys recently, which you may find informative.

Also the pages on www.sclero.org referred to on the thread are worth reading. I.e. Renal Failure and Dialysis

I am fairly certain that my elderly mother has had sine scleroderma for most of her life. And her father before her. This is probably the genetic link in my family which led to me getting the sclero.

Good luck with your doctors' visits, and let us know how you get on.

Warm hugs,

#7 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 24 June 2007 - 04:17 PM

Gemma~

I also wanted to welcome you to the forums. As you have read, there are several people here with sine Scleroderma. I agree that you should pay close attention to serious symptoms and have a good relationship with your rheumatologist.

My labs also change as time goes on, so my goal is to stay on top of it and treat symptoms as they arise.
*WestCoast*

********

#8 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 25 June 2007 - 06:57 AM

Gemma,

You mention blood tests - but there are so many specialized tests, especially for autoimmune diseases. I agree with others who recommend a good rheumatologist.

My rheumatologist orders a "Lupus Panel", which tests for various auto-antibodies as well as the usual tests associated with this type of illness (such as RH factor).

Bad creatinine clearance with high blood pressure points to possible kidney involvement. There are treatments - but you need a specialist. Forget the general practitioner or Family Practice Physician...

Good Luck,

Craig

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 25 June 2007 - 09:16 AM

Hi Gemma,

Welcome to the Sclero Forums. I'm really sorry it's due to you being so ill. You will find a lot of information, support and good friends here.

I truly look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 26 June 2007 - 02:22 PM

Hi Gemma,

I have systemic sine sclerosis. I'd be happy to answer any specific questions you may have, if I can.
xo
Jen

#11 eah

eah

    Senior Bronze Member

  • Members
  • PipPipPip
  • 42 posts

Posted 26 June 2007 - 02:37 PM

Gemma,

I have sine scleroderma. I originally had a positive ANA with anti-centromere pattern. That has been positive then negative. I have no skin involvement. I have Gerd, mild Raynaud's, muscle and joint pain, fatigue, trouble swallowing. I had a dilated esophagus on a CT. My biggest struggle is fatigue and GI issues. I do have some shortness of breath. I have min. fibrosis in my lungs. Please feel free to e-mail me with any questions.

EAH
ANN