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wonderfuldaughters

My first post.

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Hello Sclero family and friends.

 

My very first post is going to give some history. I feel nobody wants to hear my stories, so if I write it down maybe one day they will. We all know our lifespans are shortened and our diagnosis makes it challenging for us to make the best out of each day we are given.

 

I am 35 years old. When I was 21 I was pregnant with my third daughter. I had to do routine blood work like other pregnant women. One day the dr's office called and told me I had a positive reading on a test for a virus. Hmmm, no I don't. I told them they should rerun it and no depend on a machine. They gave me a different answer saying it was inconclusive. Needless to say I did not have the virus, but I did have the beginning of my scleroderma life.

 

After a few months I noticed my finger tips would become purple, white, or numb from the cold. I thought it was kinda neat so I didn't use any protection. During this time, I also had been dealing with a lot of reflux. When I talked with my primary doctor he felt these were just affects from pregnancy. After about a year or two I told the Dr I couldn't wait or deal with it any more. He looked at me and said, "I know what you have". He then referred me to a specialist about 2 hours away.

 

I only seen the specialist a few times because after awhile I moved to Florida. The only thing she did was talk with me about my symptoms and take pictures of my hands. In Florida I only would see my primary doctor. I was not progressing with my scleroderma and I found my health as far as exercise and eating played a big role in how I felt. After about 5 years in Florida I noticed the red spots appearing. Thank goodness mankind invented makeup.

 

I then moved to Georgia. After a couple years in Georgia I decided it was time to build up a history with specialists and all the fun labs and tests that go with it. I found a great Dr, and he is Russian if I remember right. Anyways, during this time I had my fifth child which was not an easy pregnancy. I felt as if my baby had no room in me. I was on bedrest from 19weeks to about 32 weeks. During the pregnancy I noticed symptoms of dysphagia. After the baby was born I had several different tests done. Immobility of esophagus and the sphincter is basically nonfunctioning as well. I do not want to do any esophagus stretching because it is expensive, not guaranteed to work, and I think it'll cause the reflux to be bad again. Oh and the red spots on my face have spread and are way worse. If people catch me without foundation on their comments are kinda like "are you ok" or "are you having an allergic reaction", or "is that poison ivy". My reply, "nope, it's just me".

 

I'm always tired, I feel extremely swollen in the morning, my circulation stinks, I'm covered in giant red freckles, I have varicose veins that sometimes hurt, I have 2 mesh screens from tearing muscles, my lips are shrinking and my mouth I think, my teeth are getting bad, my memory is not good, I choke when I eat, and I have to fight my body's desire for depression. I work and am a single mom of 5 girls, well I guess you can say 4. My oldest moved out recently.

 

Oh and about 6 weeks ago my dr started me on methotrexate and folic acid. The first month I had bizarre symptoms but it's ok now. It's still frustrating drinking tons of water that is required, but I'll make it.

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Hi Wonderfuldaughters,

 

Welcome to these forums!

 

I'm sorry to hear that you've been having such a bad time with scleroderma symptoms. Unfortunately, it is a disease with many facets and this can make it very difficult to diagnose and treat.

 

I'm pleased that you are dealing with a specialist; we do recommend that our members, if possible, consult a scleroderma expert, as this disease does require specialist knowledge and expertise. It is sometimes necessary to go out of state in order to find one with whom you feel happy.

 

As you're suffering from a number of different symptoms, I've included a link to our medical pages, where you'll find a wealth of information and advice. You can also put any of your symptoms into our search bar and that will guide you to specific pages in our medical directory and also will bring up previous threads on the Forums.

 

Now that you've joined our community, please do keep posting and let us know how you're faring.

 

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 Wonderfuldaughers,

 

Welcome to Sclero Forums!  Obviously, you have coped quite well with scleroderma for a long time.

 

Please keep in mind that I'm not a doctor, in fact I have no medical training at all. Even my first aid kit is out of date <sigh>.

 

It's possible you might want to look into esophageal stretching some more, if you can swing it financially. The esophagus can get smaller and even get erosions from the acid reflux. That is likely contributing to your difficult swallowing and choking, which will only get worse and worse unless adequately treated. It's my understanding (and please correct me if I'm wrong) that stretching the esophagus only stretches the esophagus, not the opening from the stomach to the esophagus, so it won't worsen the heartburn. And, need I point it out, that it's easy to die from a single choke gone wrong?

 

It's bothersome that your heartburn is that bad in the first place and apparently, undertreated. You might possibly be a candidate for a Nissen Fundoplication surgery, or something similar. Those surgeries are designed to quell or eliminate heartburn. In any event, if I were you, I'd see if I could get an appointment with the best esophageal doctor in my area and discuss options while things might still be treatable and manageable.

 

Oh blah blah, I've rambled on long enough.  Really, I just wanted to welcome you, and then my fingers got carried away!  So, around here, please "take what you like, and leave the rest" as we all freely toss in our two-cents worth.

 

: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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