lis73

Recently diagnosed with Scleroderma

20 posts in this topic

Hi everyone, I have found this site and I am very pleased so far with all the help you have been giving to one another. I have recently had my ANA come back positive and after going back for further testing my family doctor told me that she suspects Scleroderma. The thing is, I don't have the typical scleroderma symptoms...like the skin tightning, the blue fingers etc...I do have joint pain, knees and fingers...I have testes negative for Rheumatoid arthritis. So, I am waiting to see a Rheumatologist soon....Has anyone experienced such thing? Were your tests were showing a positive ANA and not had such bad symptoms? Is it possible for the test to be wrong??? Please help, it is a very scary time since I am only 35 and have kids!!!
Any input would be helpful, thank you so much!!!!

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Hi Lisa, Welcome to the forum, you have found a great place to be in, everyone is so friendly and warm. I'm sorry to hear that you may have Scleroderma.

 

I was diagnosed with scleroderma nearly 18 months ago, I also have a positive ANA as well as positive anti=centromeere antibodies, which suggest Limited/Crest Scleroderma. I also have had sore joints for a number of years but my initial symptoms were sore/stiff ankles,feet, achilles tendons and also two slightly swollen fingers in one hand. I also had breathing problems at the time.

My rheumatologist said that I also have the typical small mouth of Scleroderma, she was also able to see with the eye dilated nail capillaries.

I have had alot of internal things going on, but no tightening of the skin at present, although I have felt at times tightening of wrists and neck which disappears as quickly as it comes. The only tightness I feel is around the mouth which I cannot open very wide.

 

At this point in time I am stable :) and despite joint pain and stiffness which has now moved to the back area I am able to function. As you can see no two Scleroderma patients are alike, everyone is different and this disease can progress at different rates with everyone.

 

I hope I have helped some, try not to research too much on Scleroderma, alot of things are outdated and their is new medication all of the time.

 

Take care

Celia

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lis73,

Welcome to our group. I sure hope you don't have Scleroderma. There are several members here that haven't received a diagnosis yet. If you do you will soon learn how to adjust and make the most of your situation. Do you have any swallowing problems or bowel issues? What are some of your symptoms that had your doctor check your blood for autoimmune diseases? We have many people in all different age groups, from the real young to teens to young parents to grandparents and great grandparents. It can get any of us and it has. We are all learning ways of dealing with our different issues as they come about. If we can help you to not be overwhelmed and help you to cope then all of us will have also helped ourselves. We are here to help each other with whatever issues we think need attention on any given day. I hope you enjoy this forum. We are here for each other.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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lis73:

 

You may not have CREST and/or Sclero. Have you discussed polymyositis with your doctor? Don't stress out just yet. polymyositis, CREST and many Sclero symptoms can be controlled through medications. Stress is what you DON'T need now.

 

Keep us posted; we're here for you. First and foremost, be you're own advocate and push the doctors into tests and diagnostics until you get an answer.


Tru

 

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

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thank you for the fast responses!!!! Sheryl, my symptoms were of swollen joints and some bowels issues, like constipation and stomach gas.... I ended up doing a colonoscopy and endoscopy and it showed ulcers on my stomach! So that's another reason my doctor ordered an ANA test, twice!

 

Anyway, I am going to try avoiding looking at too many sites as you suggest Celia, it has really scared me!!!! It gives me hope to hear from such strong women that have handled this awful disease so well....thanks again!

 

I will keep you posted as I go through my tests.....

 

Lisley

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Hi, Lisley and welcome to the ISN Sclero Forums. As the others have said, this is a great place for information and support. Yes, it is possible to have a positive ANA and not have scleroderma. It is also possible to have scleroderma with a negative ANA. It is possible to have overlap symptoms with other autoimmune disorders which can confuse the diagnosis. Do let us know what your rheumatologist has to say after your appointment. Many of us going through these initial stages of diagnosis find the information on our Emotional Adjustment and Scleroderma page. Even if you do have Scleroderma, it is not the end of the world as you will find reading around on the forums.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Lisley ,

 

Welcome to the group.

 

My son has a positive ANA, very high sed rate, and positive Anti-RNA Polymerase 1/111 but no skin issues or Raynaud's. At first, they thought sine Scleroderma but changed the diagnosis to UCTD. His symptoms started with esophageal dismotility, restrictive lung disease, loss of vocal cords, rib carriage pain, weight loss and major fatigue.

 

He was put on Plaquenil and, after 2-3 months, his symptoms subsided.

 

Take care, Everyone.

Margaret

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Lisley,

 

Welcome to the forum. Definitely stay away from the net for info, you can make yourself crazy with all the information out there. (I know from experience).

 

Karen

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Welcome aboard. You have come to the right place for good advice and caring advice too. You are right to be dealing with a rheumatologist to try and figure out which disease you have. There are so many and to get the right diagnosis is vital. I went from doctor to doctor for a year before I was finally seen by a rheumatologist who immediately diagnosed me with Sjogren's, Systemic Sclero, and now Polymyositis on top of that, as well as Raynaud's and Mixed Connective Tissue Disorder. The disease of sclero is a scary one and I am still bothered by what can or will happen. You just have to take it day by day and do the best you can. Once you find out what you have this is a great place to come to for advice and to feel better. I don't know what I would do without it. Good luck at your appointment and I will be thinking of you as I know how scary it is.

 

Warm hugs,

 

Peggy

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Lis73 ~ welcome! You have found the right place for both reliable information and support. I had a high ANA more than seven years ago, I even had a rhumatologist tell me that my symptoms may not appear for a number of years. So don't get yourself all worked up at this point. Just keep good records (diary) and remember you know your body best.

Hopefully you will have a good doctor and get good information. At any rate, please do feel comfortable here and keep us posted.

Much love,

Nina

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Join the club- i first heard an MD say he suspected progressive systemic sclerosis when I was 35- i am now 41- l have a lot of symptoms but still no definite diagnosis. Testing for two years; positive ANA but neg for everything else. Chin up- I guess its gonna be awhile- I have a 5 year old son and looking to be around a long time.

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Lis73........There's a few males on this forum that would like to be of help if we can too. I am 52 and have had SD for 26 years, this after being given less than a year to live. My wife has had SD for about 15 years. We met at a SD convention and will be married 10 years next month. It is not the end of your world........just a change in your world. Become very educated about this unique disease and don't be afraid to stand up and have a say in your treatments. They are, after all, about you.

 

This forum is a very good place to come and share, vent, cry or whatever else you need.


~ You have to think anyway.....you might as well think big

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Hi, favord. Welcome to the ISN Sclero Forums. So glad you have found us, but sorry to hear about the problems being diagnosed. Many of us are in that place, but be assured that life goes on. Please take the time to familiarize yourself with our medical pages where you will find a huge collection of articles on related issues. I look forward to getting to know you better.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Liz73;

 

Good that you will be seeing a rheumatologist and not just a family doctor (I think my dog knows more about scleroderma than your average family doctor...). Hopefully, it will be a rheumatologist with a good background in scleroderma.

 

The rheumatologist should be able to get your blood tested for antibodies for specifics autoimmune diseases (the test order my rheumatologist uses is called "Lupus Analyzer Panel" - but it tests for more than just Lupus). This can be a great help with the diagnosis. Insist on copies of your lab reports.

 

Be tenacious with getting a correct diagnoses and get another doctor if you aren't getting answers. (or you could consult with my dachshund...)

 

Craig

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Craig, will you pleeeeeease get serious for a minute? Our ISN Hotline is being deluged with calls, asking for an appointment with your Dr. Dachshund! :blink:

 

So that just forces me to go on record here, to state that your Dachshund has no medical training at all...even though he has probably been known to sniff scleroderma out lots better than your average dogtor.

 

But I just have to put a stop to all these people barking up the wrong tree. :o


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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