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#1 ColdinWI

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Posted 22 February 2008 - 03:27 PM

Hello!

I just found this message board while doing research on Sclero...hoping you can answer some questions.

I recently went to the doctor because my feet were going white and numb in the cold (I live in Wisconsin and it is a very cold winter). She said I had raynauds and wanted to run some blood tests just to rule a few things out. When she got the tests back she said I had potential indicators for lupus so she ran another panel and called me today and said I tested "mildly positive for Scleroderma" She said that she didn't really think we needed to do anything but wait to see if more symptoms develop. I do not think I have any of the other symptoms for Sclero. The only other things going on with me are migraines which I have had for years and an excessively watery eye which I attribute to the dry winter conditions. The doctor said she could refer me to a specialist but didn't think it was necessary at this time.

I have no idea what it means to test "mildly positive for Sclero" She gave me the name of the test, but I have a hard time understanding her accent so I am not sure what it was. I am planning on changing PCPs because I really don't click with this doctor, but wanted to know if anyone could provide me with more information. Should I be worried about anything? Should I follow-up with anyone? Just not sure how to proceed. Any thoughts would be greatly appreciated.

Thanks!

#2 KarenL

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Posted 22 February 2008 - 04:12 PM

Hi "Cold" and welcome,

My brother lives in Rice Lake, so I know all about your cold winters!! Yikes, Raynaud's in WI....that's tough. Read up on this list to see if you have any other symptoms. The thing with Scleroderma is that it is a collection of symptoms, rather than any one specific thing. There are many many different "faces" to this disease, and no two people seem to present in exactly the same way.

Read up on CREST, or Limited Systemic Sclerosis. That is usually slow progressing, or sometimes never progresses. The "C" stands for calcinosis, or tiny calcium deposits usually in the fingers. The "R" is Raynaud's. the "E" is esophagus usually maniests in acid reflux disease, the "S" is for sceradactly, or skin tightening. Many people don't get this one, but some do. and the "T" is for telangiascias, or little red dots on the face, hands, neck and inside the mouth. They are tiny broken cappillaries. That collection of symptoms may cause you to test 'slightly positive'.

You are going to want to find a specialist. At least get to a Rheumatologist, they are the ones who usually deal with scleroderma. You best defense is knowledge. Don't take that sentence lightly. Read as much as you can and ask a million questions. Everyone here will help you. STAY WARM...get a car starter, use hand warmers in your shoes, heated blankets, whatever keeps you warm. Stay in touch, we'll help as we can. Peace to you,
Karen



#3 bookworm

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Posted 22 February 2008 - 10:12 PM

Hi, Cold!
Welcome! Personally, I'd go see the specialist your doctor recommends. What could it hurt? In a lot of cases a scleroderma patient literally waits years for a diagnosis. If you have sclero, it's good to catch it early. I was diagnosed with CREST in the 80s and I had just gone in for a Pap smear! I already knew I had Raynauds. I'll admit that I was scared and worried about the diagnosis, but then, nothing changed and I was feeling fine. It wasn't until about five years ago when my scleroderma really flared up and began causing me problems. Fortunately, since I already had a diagnosis, I was able to get help for my symptoms early on.
If you don't click with your doctor, I don't blame you for planning to find a new one. I definitely like to be able to understand my doctor! However, this doctor must have something on the ball if she caught sclero this early. It's rare enough that many doctors miss the diagnosis. And the tests don't always tell the whole story.
As Karen said, knowledge is your best weapon. Get yourself informed and you will be your own best advocate! By the way, this is a great place to learn a lot!

Good luck,
Mary in Texas

#4 lizzie

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Posted 22 February 2008 - 11:29 PM

Hi, I'm a bit confused by the doctors use of the term mildly positive, - positive is postive and guidelines are (at least here in the UK, and I shouldn't imagine it is any different in the US) that you should be referred to a rheuamatologist. Your dr shouldn't be 'waiting to see' if more symptoms develop - by the time you have symptoms damage can already have occurred - she should be referring you now. I would certainly consider changing your primary care physician.

Lizzie

#5 Michelle2

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Posted 23 February 2008 - 08:43 AM

Hello there and welcome to the forum. I would definately ask to see a Rheumatologist and a specialist in Scleroderma. Like Mary said, it can't possibly hurt. I also agree to that catching this early is the best way to keep on top of this disease. It's really important to have a really good rapport with your dr, so if your not feeling the connection, I would definately change primary care physician right away.

Please keep us posted in your journey.
Take care and stay warm,

Michelle

#6 Sweet

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Posted 23 February 2008 - 09:00 AM

Hi "Cold",

Welcome to the Sclero Forums. I would suggest seeing a Rheumatologist. Give he/she all your symptoms etc and they will know the appropriate tests to take, to help shed some light on the subject.
I will give you a link on Raynauds for you to review in the meantime.

Again welcome!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 mando621

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Posted 24 February 2008 - 03:00 AM

Hi from a fellow Wisconsin-ite,

I'm in South Centeral Wisconsin and it sure has been a terrible winter. Just the other day I came in nearly crying because carrying in the groceries was nearly impossible. Sometimes, my hands just get extremely painful in cold conditions. It takes a full-body chill to make my hands turn white.

Well, I'm sort of in the same boat. My ANA came back positive with one test, and then it was negative using a different criteria. I have dry eyes. Eyes that water can actually be dry. Your eye may be out of balance in producing the right kind of moisture so it compensates by producing more watery tears. I did lots of research about Sjogren's because that seems to be what I have primarily.

I have puffy, shiny hands in the morning for over an hour. Later in the day, my hands look old and wrinkled, leathery.

Well, anyway... about a Rhuematologist.. I just got the letter that my request for a referral to the University of Wisconsin Health to see a specialist has been denied by my insurance. The letter states that a person with Fibromyalgia doesn't need to see a specialist outside of the system, and that I should see my primary care physician for problems. ARRGH!!!!!!

I am trying to see someone other than the doctor that diagnosed me as Fibro. I have other symptoms that have come up since seeing that doctor about 3 years ago, but I wasn't impressed with him, so I've been reluctant to go back.

I looked back through a document I keep at work about my symptoms. If I were trying to come up with something to have wrong, I sure wouldn't pick slceroderma or Sjogren's. Neither has any type of cure, or any clear treatment that actually significantly helps. I'm tired of seeing the doctor and having them think I am just trying to get attention.

Good luck with things.

Mando.

#8 ColdinWI

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Posted 24 February 2008 - 08:40 AM

Hello!

Thanks for all the good information. I am going to go ahead and request the referral to the rheumatologist and will keep you posted. I know my primary care physician thought I should just wait until I have more symptoms, but I just can't do that - it will drive me crazy.

Sorry Mando about the denial. That is so frustrating. I actually work for a healthcare system in NE WI and belong to their HMO. I have been denied for tests in the past. I am hoping there won't be any issues with the referral since we have some rheumatologists as part of our system. I know how frustrating that can be. You shouldn't have to "prove your case" to get the care you need. Wish you the best - you will have to keep us posted.

Thanks again!

#9 debonair susie

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Posted 24 February 2008 - 04:19 PM

Hi Cold... .I'm so glad you're going to ask for a referral to see a rheumatologist... I hope the HMO doesn't give you any grief.

I hope you areable to get the healthcare you need, as the more they allow you, the better it will be for all concerned.

Take care... sending you big hugs.
Susie
Special Hugs,

Susie Kraft
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#10 Sweet

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Posted 26 February 2008 - 09:12 AM

Yeah!!! I'm so glad you are pursuing this! Keep us posted!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 Snowbird

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Posted 26 February 2008 - 11:43 AM

I agree too...push it and get a rheumatologist....it's so important! Good luck.
Sending good wishes your way!

#12 SpaceysChick

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Posted 01 March 2008 - 11:48 AM

i know that everyone has probably already has told you this, but I'm goign to put my 2 cents in. Get a rheumatologist, and get someone who will listen to you and actually be active about your diagnosis.

I still wonder today if I would be this far progressed if I had a doctor who took an active role in my healing process, instead of someone telling me that there was nothing they could do to help me.

Good luck!!!