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Your First Symptoms


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#1 fri83

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Posted 25 May 2008 - 04:13 AM

I was hoping you could tell me what your first indications where that something was wrong. I have alot of different things going on and has been getting worse for a year or so but dr has not figured it all out, so I'm trying to do my own research.

Please tell your story.

#2 Margaret

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Posted 25 May 2008 - 05:13 AM

Hi ,

My son's symptoms came on rather abruptly. Weight loss (20#s), esophageal dismotility, restrictive lung disease, loss of voice and extreme fatigue. He was intially diagnosed as sine S Scleroderma. After being on Plaquenil and symptoms regressing, his diagnosis is now UCTD.

Take care, Everyopne.
Margaret

#3 Sweet

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Posted 25 May 2008 - 07:27 AM

For me it was severe, chronic joint and muscle pain. I actually broke down crying at work (I worked at a clinic at that time) and one of the doctors saw me and put me in a room and did a gunshot effect of bloodwork and voila!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 lizzie

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Posted 25 May 2008 - 07:57 AM

The first indications for me were tachycardia and splinter haemorrhages in my finger nails. Blood tests showed positive nucleolar pattern antinuclear antibodies.
Lizie

#5 Lucy

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Posted 25 May 2008 - 08:34 AM

Hi,
The first indication was swollen fingers that never went away and stiff wrist. Then my ankles started to swell and then fatigue hit. Heartburn followed. Stiff and sore joints. All within the first 6 months of onset. Blood work was done I had an increased ANA and speckeled pattern and slightly elevated SED rate which all indicated scleroderma I was told.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#6 Snowbird

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Posted 25 May 2008 - 09:31 AM

Hi

Mine has been slowly creeping in. Started with fatigue/muscle and killer joint pain along with feeling really feverish (but sometimes my temp was lower than normal which made no sense at all considering I felt ill all the time) and that went on for a few years steadily. I was finally diagnosed with fibromyalgia back then and a plus...didn't know what the plus was until now but the Rheumatologist was sure I had something besides FM going on, it now turns out to be ANA centromere pattern Limited/CREST. Now I still have the same stuff but I get fatigued easier some days, shortness of breath sometimes now as well, and very mild swelling in my fingers daily. The feverish stuff pretty much went away for several years (it was very infrequent after it did it's initial thing) but now it's slowly returning. Joint pain is more widespread now and I am also stiffer than I used to be as well till I'm up and about (but not severe) and I also have those red T-spots too. Cuticles around my nails has been getting harder and can come off in little chunks...feet heels are pretty cracked (deep cracks) as well.
Sending good wishes your way!

#7 fri83

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Posted 25 May 2008 - 12:02 PM

did you have problems with dry skin, itching, fatigue, lightheadedness, raynauds toward the beginning??

#8 Margaret

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Posted 25 May 2008 - 12:07 PM

Hi ,

I also forgot to add that after they found the esophageal dismotility, the Gastric doctor ran all the blood work. He had a + ANA (speckled pattern, diffuse cytoplasm), SED rate of 92, and a positive Anti RNA Polymerase 1/111. I guess the esophageal dismotility is indicative of sclero. My son was only 18 years old when diagnosed and had no skin issues. Before the endoscopy and blood work came in, I had never heard of Scleroderma. Now, there is a whole series of blood work to help in the diagnosis of SS.

Take care, Everyone.
Margaret

#9 Snowbird

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Posted 25 May 2008 - 02:38 PM

Fri83

Not sure who your question is for...if it's for me, then no, I do not have Raynauds (the R in cRest, yet anyway although my hands have always been really sensitive to cold both then and now...but they do not change colours) and I do not have light headedness. Itchy, yes, always...it seems to move around from place to place on my body all the time, ie, arms for awhile, then legs for awhile, back, etc, etc. I also have dry skin.
Sending good wishes your way!

#10 PrincessB

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Posted 25 May 2008 - 08:46 PM

I had Raynaud's for about a year, it started very suddenly and became almost constant very quickly. Then I noticed that my fingers were completely swollen all the time and I started to have difficulty making a fist. It was weird, I just knew I had more than Raynaud's even at the beginning, I didn't feel right, so as soon as the swelling of the fingers happened, I went to see a specialist and he diagnosed me. Then I started getting ulcers - joy. Now I have a small mouth and quite tight skin on the hands and lower arms, although my Rodnan skin score has gone down since my sten cell transplant.
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#11 Peggy

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Posted 26 May 2008 - 11:49 AM

My first symptom was really swollen ankles and feet. Then 2 months later the feet and hands went tingly and then went numb and was diagnosed as peripheral neuropathy. It wasn't until a year later that I finally got to the reason for all of my fatigue and muscle and joint pain and was so devastated when I did finally figure out what was going on. Now I deal with something each and every day and my life has changed so dramatically. Now I wonder what is next and just how bad it's going to get. The fear of the unknown on what this disease can do is hard.

Warm hugs,
Peggy

#12 ShawMJ

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Posted 28 May 2008 - 03:28 PM

My first symptoms of all things was itchy burning feet.Then they swelled up and it traveled up to my legs.Then I started having all over pain that was horrible.My hair was also falling out by the brushfuls all I had to to was just pass my hand in my hair and gobs of it would come out! Then the arms started the same thing as my legs and feet did.Only now my skin was so shiny and tight it felt like a vise! I was also losing weight rapidly,and I was very weak! The doctors did a biopsy in the deep muscle tissue of my right leg and to this day even with a scar there it still hurts.I also had acid reflux really bad and down the road a lot of other things happened but its 10 years now and I am thankful that its no worse.I deal with the pain and take one day at a time.I hope you can do the same as a good attitude makes all the difference in the world.I have always believed that it could always be worse and one doesn't have to look far to see that.Love hugs and SMILES-Mary-La.

#13 Buttons

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Posted 28 May 2008 - 09:10 PM

My first symptom was Raynaud's but then it developed pretty much as you Snowbird. Now my Raynaud's is much much worse and I find the tiredness is hard to deal with some days and have now got CT in both hands.

#14 bunny pomar

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Posted 02 June 2008 - 09:40 AM

my first symptom was the Raynauds and about 5 years later I had a great deal of difficulty swallowing my food. It would just sit in my esophogus and not go down. That was when they diagnosed me with SSc. Now I have all kinds of problems so it has just progressed. I have had the disease for 20 years. good luck.

#15 anonym4444

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Posted 02 June 2008 - 11:11 AM

Hi,

it is always interesting to read through such stories..I learned today the correct description for something that I have also experienced the last half year ...splinter hemorraghes under the nails...yes I have those and I had to search for the exact definition first...and have found exactely the description of what I have and had. (I have the first symptoms now for 1 year and 1 month, but yet am not diagnosed).

It is funny (if you can say so which such a disease) how different but also how equal some things develop in various patients...

Yet I have to find the correct German expression for those bleedings as I have to see a dermatologist and my only such bleeding, that I currently have may have shifted out of under the nail untill I get to see him...I have never heard the correct equally descriptive term in German.

K.