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Mare

Looking for help.

9 posts in this topic

Good day to all,
I have 44 years and I am coming from Eastern Europe.

For five months I am on sick leave due to unusual symptoms throughout the body:
- my joints hurt
- my muscles hurt too
- I was diagnosed with GERD
- last month I was diagnosed with Raynaud's.
- I have something I call "the sensations" on the hands and feet.

So far there is no information what happens to me.
I suspect scleroderma and I'm really scared.

I applied for review with Professor which I found on your site.

I hope you will help me find out where the problem is.

Otherwise, in our family we had one case of scleroderma, which ended fatally, unfortunately.

Can you recommend which medical reports I must take to the Professor when I go to appointment next week?

Please forgive me for my bad English. I am very bad at writing but I understand well.

Kind regards,
Mare

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Hi Mare,

 

Welcome to these forums!

 

I'm sorry to hear that you are suffering such unpleasant symptoms and I can understand your concern, especially as you have had another member of your family with scleroderma. There are several types of scleroderma that are known to run in families and there is about a 30% chance that children from parents with any autoimmune disease might eventually develop any autoimmune disease or autoantibodies, or, more commonly, just a symptom or two of any autoimmune disease — due to general inherited and/or lifestyle susceptibility.

 

I'm glad to hear that you have an appointment next week with a Scleroderma Specialist as this disease does require expert knowledge and treatment. Once at your appointment, you will probably undergo some further  tests and I've included a link to our page on Preparing for Doctors' Appointments, which I hope you'll find helpful and interesting.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Dear Jo,

Thank you very much for your quick response.

 

Preparing for Doctor's appointment is exactly what I need.

 

Kind regards,

Mare

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Hi Mare,

 

Welcome to Sclero Forums!  I'm sorry that you are experiencing symptoms and I'm glad that you have an upcoming appointment with a scleroderma expert.  You might also want to review our Diagnosis of Scleroderma section for more videos and information.


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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Dear Shelley,

 

Thank you very much for your response.

 

Kind regards,

 

Mare

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Dear All,

I was at meeting with scleroderma specialist and this was a good decision.

Videocapillaroscopy went good and specialist says that we are going for all the tests before he gives me some medication. For now, there is no diagnosis.

They took a lot of blood and now is waiting period for 20 days for me.

I'm scared to death and I hope for the best.

Regards to all,
Mare

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Hi Mare,

 

Thanks so much for your update and I'm glad that you found your consultation with a scleroderma expert helpful.

 

Unfortunately, scleroderma is very difficult to diagnose (I believe the average time to receive a diagnosis is six years) and so I can understand your anxiety and worry whilst waiting for the results of your tests.

 

Please do post again and let us know, when you hear more from your consultant.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Mare,

 

I am delighted that you were able to consult a scleroderma expert.  I know what it is like to wait for test results, sometimes it feels like half my life has been spent waiting for one result or another!

 

This might be a good time to read through forum archives of members who have been waiting for the results of this test or that, or this diagnosis or that, over the years, as many helpful hints for dealing with this phase are lounging about. Most of us will say that the time between onset of symptoms and diagnosis was the absolute worst time for us ever in dealing with the disease. By comparison, it's a piece of cake to deal with any eventual diagnosis.

 

I just need to warn you that it is an average of six years from onset to diagnosis of scleroderma.  Sometimes the process is speeded up a bit by seeing an expert right away (which is why we strongly recommend it whenever there is good suspicion of scleroderma).  BUT the disease itself can onset very slowly, can be similar to a great many other illnesses, and can take years and sometimes even decades to firmly declare itself.  It hardly ever happens for a person to see an expert once and then voila, have a diagnosis of scleroderma. It is much more normal for someone to slog through years and years of tests and follow-ups and differing opinions and just general mass confusion.

 

I mention this in hopes that this tampers your expectations, both for yourself and for your rheumatologist. They cannot create a diagnosis out of thin air, even when they strongly suspect one. It is just as much a waiting game for them as it is for us. And if their response right now is that it is too soon to tell precisely what you have, please do not be discouraged.

 

Many of us here know how it is to be terribly ill, to want and need immediate answers, and to be frustrated at every turn in the road. But in those cases, neither the patient nor the doctor are at fault, but rather those extremely pesky autoimmune diseases which are often extremely challenging to diagnose. I'm not saying you won't get a diagnosis, but only that it would actually be pretty unusual if you get firm answers, this soon after onset.

 

: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.

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Dear Shelley and Jo,

 

Thank you so much for your response.

 

Doctor calmed me a little, because he said that he accepted me as a patient and that I should be treated in one way or another. He just asked for patience for another 20 days.

 

This is my third rheumatology exam in 5 months and he is the first one who thinks that I'm not crazy.

 

At the end I must emphasize that I paid 1000 EUR this consultation and all the blood work.

 

Sorry for my bad English, I promise I will train my English skills this year much harder :happy:

 

Hope you understand me :happy:

 

Thank you all, and I will be back.

 

Mare

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