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How Long Have You Been Diagnosed

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Hi Lizzie!

 

It is so good to see you here on the fourms! Welcome! I am glad you have found us and joined us. I hope you will come and post often.

 

Warm wishes,

Heidi

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Hello All,

 

Let's see: How long diagnosed? 18 years

 

Feel better on meds? NO

 

Feel it's under control? Very out of control. This year have progressed from thyroid disease to thyroid distruction. Advanced gastropareses, Hypercoag problem with lupus anticoagulant antibody,2 TIA's.

 

Main problem now? I feel like I've given up on the idea that I'll be ok. Too many symptoms, too much pain, too nauseated, too many doctors, just plain old too much of it all. Now that sounds like a real pity party, and I don't mean to come across like that - but I'm just sick and tired of it. I've been sick my entire adult life. I have to add, I still feel life is worth living.

 

Main symptom at diagnosis: Here's the kicker - none. It was found quite by accident when I could not get better after surgery.

 

My added question: Greatest concern at this time? How much longer I'll be able to work & the problems attached with going out on disablity.

 

Good day to all,

JLF

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Hi Everyone,

 

How long have you been diagnosed?

**I was diagnosed 3/2006 with a positive SCL70 test result.

 

Do you feel your disease is currently progressing?

**Yes, particularly fast since I switched from MTX to Cellcept.

 

Do you feel better now that you are on meds?

**Yes, reflux is under control but the joints, and skin are not better. I have only been on Cellcept for about 6 weeks.

 

Do you feel you have it under control?

**No

 

What is your main symptom now?

**Skin tightening on hands, wrists, face, neck, chest, legs and way worse joint pain everywere with tendon rubs.

 

What was your main symptoms at time of diagnosis?

**Swollen hands, carpal tunnel, sore knees, and acid reflux

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Hi Heather,

 

I just noticed that this was your first post, so I wanted to take the opportunity to welcome you to the forums. I am glad you found us but sorry it is because of having scleroderma. I do hope that the cellcept starts working for you. I also hope you will come here and post often and let us know how you are doing.

 

Warm wishes,

Heidi

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Hi Jennifer,

 

Guess I'll throw in my two cents as well...

 

1. How long have you been diagnosed?

 

A diagnosis of osteoarthritis came in back in 1985. In June 2006, one doctor gave a diagnosis of lupus and another gave a tentative diagnosis of sclero. The last few symptoms to give the full diagnosis on the sclero just came in last Friday, but at least now I know. It took long enough (lol). How many just nodded "yes" to that one?

 

2. Do you feel your disease is currently progressing?

 

Yes, sometimes day by day (minute by minute?), then it might slow a bit for a couple of months.

 

3. Do you feel better now that you are on meds?

 

I'll be heading to the doctor tomorrow to ask about prednisone. I can't take any NSAID's anymore, and an herbal anti-inflammatory that has worked for years isn't strong enough at this point. We'll see how it goes!

 

4. Do you feel you have it under control?

 

Uhhh...no. You know how junker cars are; as soon as one thing seems like it's fixed, something else breaks. It has been about 34 years now dealing with various CTD's and FSHD (a mild form of muscular dystrophy--seems like it's worsening again lately), so I joke around about heading to the junk yard for parts. Laughter truly helps when you really want to scream.

 

5.What is your main symptom now?

 

Main symptom? Pain from head to foot, tendons that are inflamed and tightening up more every day, medium to large masses (feel like cartilage or bone) in the groin, armpits, and shoulders that the doctors haven't really given a name, more areas of darkening and thickening skin, calcinosis on my upper to mid back, shoulders, and under the eyes, fatigue.

 

6. What was your main symptoms at time of diagnosis?

 

Gastric problems, often severe (oh, how many relate to that!), fevers, muscles tightening around the trunk of my body making breathing difficult, difficulty swallowing, hair loss...Wow, re-reading this makes me want a nap (lol). A nice hot shower can only help, then onto life and ignoring as many pesky symptoms as possible.

 

Thanks for asking us what's going on! It helps to know you're not alone, and there are some on this board that are suffering horribly, and maybe this can offer some encouragement that they're not alone.

 

Warmest wishes to you,

Elehos

 

 

 

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PLEASE POST ANY REPLIES TO THE MOST RECENT THREAD:

 

 

 

http://www.sclero.org/forums/index.php?showtopic=6112

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