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Before I was diagnosed with scleroderma I was one of those people that went to the internet and typed my symptoms in my Google search bar. I then just knew that I had at least 100 diseases and now I look back and laugh at it. Like most I found sites that had chats and I would write about all my symptoms and ask “do you think I have this?”

 

When I went to my doctor she did a lot of blood tests and she sent me to a neurologist. He did a test that determined that I had neuropathy in both legs and arms. As a result of my blood tests, when I went to my appointment she gave me the diagnosis of scleroderma. At that point it hit me hard and then she sent me to my rheumatologist.

 

They all said there was no cure; that was about 8 years ago.My aunt agreed we now know more than we ever wanted to know.

 

My hope is that if you get that same illness do not panic; it is not a death sentence. Do your best to keep hope that some day the answer will come with a cure and if at times you need to cry, be my guest; it can be good to have a cleansing cry.

 

My thoughts will go to every one.

 

 

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Hi Quiltfairy,

 

11 hours ago, quiltfairy said:

Before I was diagnosed with scleroderma I was one of those people that went to the internet and typed my symptoms in my Google search bar. I then just knew that I had at least 100 diseases and now I look back and laugh at it. Like most I found sites that had chats and I would write about all my symptoms and ask “do you think I have this?"

 

 

I can absolutely understand what you're saying; I recall that before I was first diagnosed, I was foolish enough to look up my pulmonary fibrosis symptoms on the internet and frightened myself witless.:crying-kleenex:Thankfully, I had an extremely good lung consultant who looked me in the eye and told me in words of one syllable that I did not have idiopathic pulmonary fibrosis (which is the one where you basically die, as there is no cure and life expectancy is about 5 years or less!)

 

I was so relieved when I found out that it was an autoimmune problem,  I started babbling incoherently about (of all things!) autoimmune problems in cocker spaniels and I could see that the poor man was convinced that I must be a bit touched and thought to himself "we've got a right one here!!":wink: :lol:  

 

You're completely correct, a scleroderma diagnosis is not always a death certificate and actually my quality of life has improved, as I wouldn't have met so many fantastic people, most of whom have become good friends, if I hadn't developed scleroderma.

 

There's always a bright side!! :happy:

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi

 

I definitely relate to the panic thing.  On line looking at this or that, but my daughter has been supportive and talks me down.  I am in the diagnosis stage with many weird feelings going through my head. I am afraid of the placquenil and side effects and have to get brave.  I am trying to accept.  Thank you for your words.  Had a breathing test but never heard my results.  Hope is there and blessings.

 

Marybeth

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Hi Marybeth,

 

I can understand that you’re feeling concerned about taking placquenil; I have to take an immunosuppressant and steroids among other things and I wasn’t keen on bombarding my body with strong drugs.

 

However, I soon realised that the long and the short of it was that if I didn’t take the medication I was likely to die, which I find tends to concentrate the mind wonderfully. :wink:

 

I’ve been taking the medication for the last nine years and I’m still very much alive, so I consider that it’s worth it! :lol:

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I agree with Joelf, I've only been on Plaquenil for a year, and all is ok.   I was diagnosed with Systemic Scleroderma with CREST a year ago.  I have multiple autoimmune issues, starting 20ish years go, and I'm not a fan of taking prescriptions.  Just make sure you get your eyes checked, and ask your doctor about any concerns, or let them know of any changes. Communication is key!  I make packets for each doctor of current labs, medications, and a list of all my doctors. I'm proactive!  

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Hi Shannon,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with scleroderma and that you have other autoimmune conditions to deal with.

 

Being proactive and positive is very important and I hope you will enjoy being a member of our community.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi MaryBeth,

 

I have been on Plaquenil for 18 years, no problems at all. The way it was explained to me by my Scleroderma specialist, is it has the ability to slow down and or HALT any progression. So I'm all on board with that. It helped with my pain as well tremendously .  It is extremely important however to get regular Plaquenil eye exams. One right away as a baseline and then depending on what your doctor wants, every 6-12 months. 

 

 


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Within 7 years, I've been diagnosed with multiple autoimmune diseases, most of which I looked up, learned all I could about, and then suggested as a possibility to the various doctors I've seen at various hospital clinics in different cities.  Blood tests, X-rays, CT scans, nerve conduction tests, a lumbar puncture, MRIs  etc, all confirmed my fears.

 

The diseases were diagnosed in this order:

1.   Fibromyalgia (2011)

2.   Pernicious Anemia, chronic lack of B vits, especially B12 (2013)

3.   Ankylosing Spondylitis (2016)

4.   Sjogren's Syndrome (2017)

5.   Dercum's Disease - Adiposis Dolorosa (2018)

 

I was referred to a Gastrologist by my Rheumatologist a few weeks ago because food is getting stuck low down in my esophagus, which is very painful. After a barium swallow and an endoscopy, the Gastrologist (and the department's teaching Professor) suspect I may now have Systemic Sclerosis as well. This was a disease I'd looked up a few weeks back, but dismissed. Next Monday, I'm scheduled for a manometry test and will see the Gastrologist a few days later, for the result. I hope I was wrong...

 

As a non-paying clinic patient, I must praise all the doctors and specialists for listening to my suggestions and readons, rather than ignoring them.

 

The moral of my story is this: don't sit back and wait for someone to diagnose you. Be pro active, without arrogance or anger. It pays off, even if you are wrong. We know our own bodies.

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Hi Stcherry,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with so many health problems. However, I would wholeheartedly endorse your policy of finding out as much as you can about your various conditions and then suggesting ways and means of supporting your doctors, to enable them to help you in the best possible way.

 

I find your attitude most refreshing and you sound like a person after my own heart, as one of my simple pleasures is telling helping my medical team to do their job. :wink: It is so important to take control and be aware of all the details of these complex diseases.

 

I do hope that when you see your gastrologist and receive the results of your manometry test, your worst fears will not be realised. However, if they are and you find that you're having to add scleroderma to the mix, I'm sure that your positive attitude will go a long way towards helping you to cope with it and obtain the best treatment for it.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Stcherry,

 

Welcome to Sclero Forums!  It's such a catch-22 when you think you may have an illness like scleroderma.

 

It's like, oh dear, I hope I'm wrong, and on the other hand, I hope I'm right! But really, I want to be wrong about this one! But it'd be embarrassing to be wrong. However, bring on the blushing if it gets me out of this predicament with nothing more amiss. Then again, if I have it, I do want to know. Except I really don't! 

 

But I'm here to say, either way, it's okay, Stcherry, and you've come to the right place for understanding and support. 

 

: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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