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Biomarker for Diffuse Scleroderma skin has been discovered!


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New member..Alone and a bit afraid


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#1 RSS

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Posted 25 June 2015 - 05:29 AM

Hello everyone. I found this site last night and so I'm a newbie here. I will try to keep this brief. I am very confused and also a bit scared. My story begins 3 years ago. I had always been very healthy but one morning I awoke to a soreness in both hands and my feet were very cold. I really didn't think much of it and thought it would go away. I was due for a 6 month routine checkup with my primary doctor and when these symptoms did not go away, I told him about it. As part of his usual procedure he ran the normal blood tests he usually runs.

This time however unbeknown to me, he added a couple. Two days later I got a call from his office saying all my blood work was fine with the exception that I had tested positive for scleroderma. I had no idea what that was so I looked it up and needless to say what I found frightened me. I immediately called his office and made an appointment to come back in the next day. 

When I arrived he seemed a bit surprised to see me. I told him I wanted to discuss my lab work. He said " you mean the scleroderma"?

He said it was nothing to worry about and I probably didn't even have it.  Folks, I got a copy of my blood work and the results were ANA-Direct Positive and my Antiscleroderma-70 antibodies were >8.0     From what research I have done on my own, that seems pretty bad.  Six months later when I went back to him I was still having the same symptoms and convinced him to send me to a rheumatologist.

It took several months to get in as he is supposed to be one of the best in my area. He talked to me prior to doing any testing and simply said, ' You don't have scleroderma'.  Now when he did blood tests and they called me with the results, it was exactly the same.   ANA Positive, Antiscleroderma -70 antibodies >8.0      No one has ever told me anything else. If in fact I have the disease I have no idea if it is localized or the more serious type. I still have the same symptoms but in addition out of nowhere last week my left hand became quite stiff and swollen. I haven't injured it. The skin also is extremely tight. I am afraid and no one seems to be concerned. As far as I know, there is no specialist in this field where I live. I know all of you have a lot of experience and I need some help. Would any of you please tell me what you think. As my title said, I feel alone and afraid!  Thank you,

 

Steve



#2 Shelley Ensz

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Posted 25 June 2015 - 08:31 AM

Hi Steve,

Welcome to Sclero Forums. I'm sorry you have symptoms of scleroderma and positive blood work.

I strongly recommend that you consult a listed scleroderma expert to garner an opinion you can rely on. Perhaps it might be too early for any diagnosis, so you may need to be followed awhile before anything is settled. But in the meantime, anyone with your risk factors should see about nailing down life or disability insurance beforehand.

It's not that you are going to need those benefits right away, just that they will probably be impossible to get once anything becomes official.
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.

#3 Joelf

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Posted 25 June 2015 - 09:49 AM

Hi Steve,

 

Welcome to these forums!

 

I'm sorry to hear that you've had worrying blood tests and I can understand that you're feeling worried and scared about the results. As Shelley has recommended, it would be advantageous for you to consult a Scleroderma expert if possible, as this unusual disease does require specialist knowledge and expertise.

 

Although your blood tests are obviously very worrying, it is possible to have positive blood test results and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. In order to reach the correct diagnosis, it's important for your rheumatologist to take into account any clinical symptoms you're experiencing, as the blood tests, although helpful are by no means conclusive. The problem that you have with your swollen hand, may or may not be a symptom of Scleroderma, so it's likely that you will need to have further tests.

 

Please do keep posting and let us know how you're faring.

 

Kind regards,


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#4 RSS

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Posted 25 June 2015 - 01:57 PM

I just wanted to thank you both for responding to me. I did an internet search and was able to find a rheumatologist in my area who supposedly specializes in Scleroderma, and I am going to try to get an appointment with her. Again, thanks for your response.

 

It's nice to know there are people out there who care.

Steve



#5 Shelley Ensz

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Posted 25 June 2015 - 04:36 PM

Hi Steve,

 

Just to make sure, you used our ISN Guide to Scleroderma Experts, right?  The reason I ask is because thousands of rheumatologists claim to be scleroderma specialists, but real experts are very few and very far between, because it is such a rare illness.

 

However, most rheumatologists list scleroderma as one of their specialties, even though the average rheumatologist may only see one or two cases in their entire career. It's just that it is one of the rheumatic diseases so it is often just listed automatically, and does not necessarily mean the sort of expert we are talking about.

 

The field of real experts is very small, so they network together and collaborate on clinical trials. Most people need to go out of state for an expert, and it's not uncommon to have to wait months for a first appointment.

 

:hug-group:

 


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.

#6 RSS

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Posted 26 June 2015 - 03:49 AM

Yes, I did use the ISN guide. Then I did a bit more research on the doctor listed there. I am calling on Monday to see about availability. The Doctor's website does say they are accepting new patients. I realize it may take a while to get in, but I am going to pursue it. Thanks.

#7 Sweet

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Posted 26 June 2015 - 05:45 AM

Hi Steve,

 

My heart goes out to you. I remember all to well the overwhelming feelings I had at the beginning. I felt as though I was given a death sentence. That was over 15 years ago, and I'm still here! I've had fairly slow progression.

 

I'm really glad to hear you have an appointment with a Sclero Expert. Finding the right doctor is KEY. One that specializes, and also one you have a good rapport with. 

 

It can take a long time before a true diagnosis is nailed down, so please be patient. There is a lot of "Let's wait and see". It's a tough disease to diagnose quickly.

 

But we are here for you when you have questions, or just need someone to talk with.

 

Please keep a positive attitude, and keep us posted on your appointments. 


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Ron

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Posted 26 June 2015 - 07:15 AM

Steve, I was diagnosed with Raynauds in 1984 and Scleroderma in 1987. I am now 52 years old. I have a lot of problems related to it, my biggest on right now is lung involvement.  Just had  PFT yesterday, should have results back in 5 days.

The disease progresses at different rates in different people.  You need a good Scleroderma doctor.  Having SD is not an automatic death sentence, you can live years with it.  I am proof of that.



#9 Amanda Thorpe

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Posted 28 June 2015 - 12:06 AM

Hello Steve

 

I'd like to add my delayed welcome! You're now doing the best thing you can, seeing a listed scleroderma expert, or you will be once you have your appointment.

 

The best thing about seeing a scleroderma expert is that they know a diagnosis of scleroderma must be symptom lead and indeed what symptoms qualify towards it. They also know the proper place of blood work, that you can have scleroderma, whether it's positive or negative.

 

Please let us know how your appointment goes and should you have scleroderma, I'd like to echo Ron, there's still good life to be had, it's just that life may well look nothing like you thought it would but that's not necessarily a bad thing!

 

Take care.


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#10 Shelley Ensz

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Posted 07 July 2015 - 04:56 PM

Hi Steve,

How is it going for you? Do you have your appointment set up yet?
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.