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TampaLorie

New Member

12 posts in this topic

Hi, just would like to introduce myself. According to my test results, I have SLE or mixed connective tissue disorder. My doctor says that my symptoms resemble scleroderma. I have sooooo many issues, the worst being pain (fibromyalgia). Would like to communicate with others that have simular symptoms.

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Welcome to Sclero Forums, TampaLorie! It is great to have you here, although I'm sorry it's because you have connective tissue disease. Most of us have gone through a long and confusing diagnostic process and many of us are still going through it.

You might particularly enjoy our pages on our main site:

Difficult Diagnosis
Fibromyalgia


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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Hey Tampa! I'm Michele from Atlanta. I'm soooo sorry you are finding this great group of people because of sickness. Know this is a condition/disease you can live with. You will have many good days - that's a promise. You will get frustrated, know that that's a part of this new world. You'll get pricked, injected, scanned, prodded knowing that it's the yuck part of this disease. BUT you must try to remember that tomorrow is another day with many bright opportunities and happiness just waiting to be found. Many of us have started the same rollercoaster you are just strapping in to ride. Know that we are here for you through all the ups & downs and the flat parts too! I can honestly say this disease has opened many doors to many people I would have never known existed and have made some of the best friendships of my life rolleyes.gif

"Positive attitude and I can deal with this" will get you through many a day. I'm here for you should you need me.


Soft hugs your way,

 

Michele

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Hi,

Welcome to the forum! I am sorry that you are feeling so bad. I too try to keep a positive attitude, though some days it is real hard. I have scleroderma, sjogren's, and fibromyalgia. Feel free to private message or email me at any time.

Take Care :D

Nan

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Welcome to this site which I have found very helpful and am sure you will to.

I myself was only diagnosed in July this year with SSc but last February was diagnosed with Fybromyalgia. I felt very scared by what was happening to me & I suppose not in control of my life but by reading up & asking question it does help.

 

I'm from the UK & my rheumatologist doesn't believe in Fybro which doesn't help & wish I was I with another doctor but our system is different & it's not easy to change doctors.

 

Take Care of yourself

 

Jensue

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Hi Lorie,

 

So sorry that you are not feeling well and have MCTD. I understand exactly how you feel. I got my diagnosis last spring and was so unsure of what was going to happen to me. Finding this group has been a blessing for me. Ask questions and they will be answered. Need a hug and you will get many. Having good news and want to do the happy dance. others will dance with you. Remember that you are not alone.

 

We now have chat so if time allows you maybe you could come join us and get to know some great people and get some answers. The next chat is Sunday night at 9 est. Hope to see you there!!


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi, Lorie. Let me add my welcome to the pile. I am so glad you found us. The links Shelley gave you are a good start and there is much more on the medical pages (blue tab at the top of the page). Everyone is right - this group is very supportive and helpful. Hugs to you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I really appreciate all your encouragement!!! I love this already! And, you are all so knowledgeable.

 

Thank you!!!!!!!

 

I do have a question if anyone can help me. I have been seeing a rheumatologist for 4 years now. My ANA usually runs around 4 or 500. I have (SLE) Raynaud's and Fibermyalgia. Is the future that unpredictable? Will I be able to work along time? I am 44 years old. I inherited this from my father. He was retired in his early 40's, but the drugs were not developed yet.

 

 

Any info would be greatly appreciated.

Thanks

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Hi again! I can't really answer your question because with scleroderma it is different for each of us.... we each own our own disease so to speak. My ana is always the same 640 I think it is but my doctors all say that same thing..... do not put too much in it because someone without sclero could have a high ana just from a simple cold. I do like to know my numbers but the ones I worry the most about are my CK and kidney and liver tests. wish I know he names of them but I do not have my labs with me right now. I am sure others will jump in and help you more then I could.


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi Lorie,

 

Welcome to the group! I'm really happy that you found us. I'm sorry to hear of your multiple illnesses. I have SLE, Scleroderma, symptoms of sjogren's and fibro. It truly can be overwhelming at times! I tried a long time ago to stop trying to figure out which disease was causing which symptom, and now I focus on balance.

 

You asked about working- it really is different for everybody as far as how fast things progress, or how long you will be able to work, so don't put any undue pressure on yourself, just take each day as it comes.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Welcome Lorie! I am so glad that you found this site. So many of us share Scleroderma along with other autoimmune illnesses. This is a great place to find support and information.


*WestCoast*

 

********

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