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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 agilitygirl

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Posted 27 February 2010 - 06:58 AM

Hi, I have been reading posts since November. Still uncertain of diagnosis,but do have a variety autoimmune symptoms. Two years ago had a bout of Iritis. Went away with treatment. Then had another bout this past October. I was not feeling well, muscle and joint aches, fatigue. My opthamologist asked for a systemic workup (go figure). My general practitioner did blood work and found some possible indications of autoimmune problems. She sent me to a Rhuematologist (go figure!). During history taking and exam - she became suspicious about scleroderma - CREST. One of my maternal aunts died of Pulmonary Hypertension and my mother has been diagnosed with Lupus. She said I have Raynaud's and Telangiectasias. I was also feeling a weird sensation that is hard to describe in my throat and upper chest area, a pulling sensation when I swallow and times when it feels inflamed (a pulsing, throbbing). So she ordered a bunch of tests. More blood work, an Echocardiogram, Barium Swallow and Pulmonary function. When I went back - the blood work and echo were done. She said that I did not have CREST, but had undifferentiated connective tissue disease (UCTD). I had these white spots show up on my arm, she said was vitiligo. Blood work showed positive ANA, borderline RF, anti-gliadin and anti-cardiolipin antibodies. The echo was apparently normal - although she did not discuss it - so I figure normal - especially since the tech that did it, said if she had found anything unusual she would ask for someone to view it with her. So I have a bunch of possibly unrelated findings. She started my on Plaquenil in February. Not sure if it has help a whole lot yet.

My barium swallow and pulmonary test will be done before my next visit to the rheumatologist. So I have lots of questions and also seem to be obsessed with trying to find the answers. Finding it hard to concentrate at work and even at home.

Well that's me. Thanks for any supportive comments you have.

#2 Shelley Ensz

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Posted 27 February 2010 - 12:52 PM

Hi Agilitygirl,

Welcome to Sclero Forums! I'm sorry it is because you have connective tissue disease. We have a section on our main site about Difficult Diagnosis. There might be some tips in there you could find helpful.

Plaquenil is good stuff, but it can take a few months to kick in, so hang in there with it.
Warm Hugs,

Shelley Ensz
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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.

#3 agilitygirl

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Posted 28 February 2010 - 04:01 AM

Thanks Shelley. I'll check out the site. I have found the information on the site to be very helpful.

Some of the questions I have are about what I might watch out for and what is just normal stuff that I can say okay, that is not part of any developing symptom. The information and pictures show full blown very definite symptoms, but I have found very little information on how these things present initially. For example, (I know this may be minor, but when it happens I wonder), anyway, my hands have been red and reactive to cold. I know that is the Raynaud's, but my little finger has a deep down itch. Not sure how to explain it. It is like there is something there irritating it, but I don't see anything. I rub it for a while and then it usually goes away. Now is that something that may develop (maybe early indication of calcinosis?) or is it just an itch? These are the kind of things I have been dealing with. Am I over reacting, focusing too much on my body and looking for symptoms that are not really there? Or are my concerns valid precursors to something else? Another example, when I was developing the vitiligo. I thought oh this is just scars that are not tanning and almost did not mention it to my doctor. When I did, she said that it is vitiligo, that is another sign of autoimmune disease. So it is hard to tell, what is important and what is not.

Have others had these types of questions? I do feel somewhat better knowing that what I was feeling was related to some type of autoimmune disease. Also from what I understand, that these diffuse symptoms often indicate that I will not likely develop serious, life-threatening symptoms. So that is good, but I also want to know how others have experienced their early symptoms, that they might have dismissed until it was raging.

Thanks for being here to share your journey. It's like you all are breaking ground for me, making it easier for me to navigate this disease path.

#4 Jeannie McClelland

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Posted 28 February 2010 - 02:04 PM

Hi Agilitygirl,

I'd like to welcome you to the Forums too.

It's completely normal to have more questions than answers and also to wonder if everything from an itch to an obsessive craving for dark chocolate might be connected to a disease process, especially in the beginning. Things do seem to calm down after a while (or maybe we just learn to go with the flow).

It seems like you have a good team of doctors who are on the ball and ordering an appropriate range of tests (very helpful in establishing a baseline). When you see your rheumatologist again, it would be a good idea to ask what sort of symptoms she considers significant and that you should report immediately.

I try and dream up something new and totally implausible for my pulmonology visits, just to keep my doctor laughing. After 3-1/3rd years, I've finally learned that not everything is due to scleroderma and now I can relax and enjoy it. ;)

In the meantime, you might want to check out the Emotional Adjustment pages. There's lots of good information in them.

I hope you'll post often and let us get to know you. Will you let us know how the remaining tests go and what the rheumatologist has to say?

Best wishes,
Jeannie McClelland
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#5 Amanda Thorpe

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Posted 01 March 2010 - 06:56 AM

Hello Agilitygirl

Welcome to the forum ad congrats on moving to the main forum ! In the beginning...famous last words! It's very frustrating and confusing at the start because you don't know what is significant and what isn't, unfortunately we all start at the beginning and have to progress through it and once we have we then share the knowledge with others who are at the beginning of their journeys.

It's great that all the necessary tests have been lined up for you and make sure you let us know how you get on.

Take care.
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#6 kaykay

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Posted 01 March 2010 - 08:54 AM

The best advice I got from this forum was to ask for copies of all those tests and also the doctor visits' report. It was quite enlightening. My diagnosis is like a pong game, in my file it ranges from UCTD, Lupus, Sjogren's, CREST and MCTD the latter is probably the best description for now. One doctor told me that the more varied and undefined the symptoms are the more likely it is to be a tolerable case. So though it's frustrating waiting for a diagnosis I think actually the longer the disease takes to define itself the slower it is progressing and that is a good thing.

Hang in there, and good luck with the swallow test. Are you on any GERD meds?

#7 agilitygirl

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Posted 01 March 2010 - 01:58 PM

Thanks all for your well wishes.

I am afraid today. My hands were red and felt swollen, most of the day. To me they felt hot, but when I touched someone else they said my hands were cold. That was weird. Then I noticed that my legs are showing signs of vitiligo, until now it was only on my arms. And not only that they are all mottled, red and white and purple. Yikes! Theeennn, I went to the gym, even though I have not felt like doing much of anything. I am trying... Anyway I went to the mirror when I was changing and noticed some changes in the texture of the skin on my sides. It is hard to describe. The skin is kind of puckery in bands about three inches across and an inch and a half high. The texture is definitely different. I flipped out a bit after that. I almost went home for a good cry, but then thought - what can you do about it - nothing. So I just went out and walked on the treadmill, telling myself, I need to try to do the healthy things. I mean really, there is not much I can do but go to my appointments, take my meds, eat right, sleep as well as I can (that is not going well) and get some exercise. But again, maybe it is just normal changes in my skin - I am getting older 52 ugh. Initially I was ready to just write off all my symptoms to perimenopause. That was before the lab work came back.

It's scary to just all of a sudden find something like that. Can it really happen that quickly? Did I just miss it before? And maybe it is really nothing? I will be going to my general practitioner this week (so I might find out about the barium swallow (yuck!) and the pulmonary tests), the opthamologist next week (are others who are taking Plaquenil getting their vision checked regularly?) and the rheumatologist the week after that.

I'm having trouble concentrating at work. Go figure. Luckily I have a really good job that I enjoy. I get to help people, which takes my focus off me while I am there. There are some really caring people that work there as well.

Thanks again for the support.

Oh, I forgot to answer about the GERD meds. I have not had any noticeable symptoms that I would call heartburn, just a tightness and pulling in my upper chest when I swallow. I took some for about two weeks, but it did not seem to effect me one way or another. I was only given some samples from my general practitioner and it said to only take them for 14 days, so when I ran out I just stopped. I will ask her about it when I see her.
Thanks for asking.

#8 erika

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Posted 02 March 2010 - 12:54 AM

Dear Agilitygirl,
I am in the similar phase with illness as you are, so many of your doubts and fears seem very familiar to me. Every new symptom makes me more depressed and pessimistic. Can not distinguish what is scleroderma and what is not. What I thought was allergy before now is sclero, what I thought was pimple before now is sclero... The best hope I still trust in is that in certain time the disease usually wears out and takes more stable course. Does it usually or only sometimes? I must check the wording somewhere in these pages...

The most difficult is to transfer from healthy to sick, and even harder to accept that.

Good luck.

Erika

#9 Amanda Thorpe

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Posted 02 March 2010 - 03:12 AM

Hello Erika

Scleroderma can have an active phase of 3 to 5 years after which it can plateau, of course as you know everyone has a slightly different experience of scleroderma so there are no hard and fast rules about how it will progress.

Take care.
Amanda Thorpe
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#10 agilitygirl

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Posted 02 March 2010 - 01:48 PM

I thought I had a pimple too!! Boy, am I glad I found this forum.