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Typical Age Of Dx?


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#1 KELLYB.

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Posted 24 February 2007 - 03:54 AM

Hello everyone! I am just searching for some of my own statistics. Curiosity I guess. I would appreciate any responses :)

Wondering-

What age were you diagnosis? What was the diagnosis?

What were the first symptoms?

*Also looking for young mothers affected by Scleroderma.*

Normal pregnancies? Any symptoms present?


Thank you again for responding :D

kellyann

#2 Sweet

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Posted 24 February 2007 - 05:13 AM

Hi Kelly,

I think there is an extensive thread on this topic already, but I'm not sure how to find it. Maybe one of the other moderators can.

I was diagnosed at age 40 - early diagnosed Lupus, and within 1 years CREST.
First symptom was PAIN, all over had a melt down at work, (I worked at a clinic) I saw a doctor right then and then and he drew all the right bloodwork and viola!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 nan

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Posted 24 February 2007 - 05:13 AM

Kellyann,
I was diagnosis in 1998 at the age of 41 with Fibroymyalgia, Sjogren's Syndrome, GERD, and Raynaud's. I was having muscle aches, severe joint pain, vomiting, and general stomach problems. I also had very dry mouth and eyes. I lost a great deal of weight. I essentially was exhausted all the time and felt like I had the flu. I used to be a ballerina so I used that mentality of the show must go on and just kept pushing. I have one son and he was only 6. We adopted him after trying for 12 years to have a child.
I kept plugging along never feeling very good. I tried accupuncture, I tried a nutritionist that I traveled three hours to see, different diets. In 2003 I started having really difficult times swallowing. The upper endoscopy showed nothing. In February of 2004 I had a fluid filled cyst taken off of my knee. The bone scan had shown osteomylitis. I was fortunate. In the fall of 2004 I had a major GI bleed- My hemoglobin went down to 6.1. The upper endoscopy showed watermelon stomach, which is strongly associated with scleroderma. Since bloodwork didn't come back positive for scleroderma the doctor said I didn't have it. Also at this time I had degenerative joint disease in my right thumb. I had surgery in Jan of 2005 and my hand didn't heal properly. I loss a ton of muscle. I was working full time up until GI bleed. I haven't worked since then. I was able to get disability on the second try. In the middle of all of this my thyroid almost stopped functioning. I had had underactive thyroid for years, but the iron supplement I took now interfered with absorption with thyroid med. I went to a new rheumatologist and he did bloodwork and it all came back within normal range. He said that he thought that I didn't have Sjogren's. but had scleroderma sine scleroderma because my skin hadn't changed. When I went to him again he said that he thought I had Sjogren's not scleroderma and that it really didn't matter because all he could treat was the symptons. He told me the only way to get a definite diagnosis was to go to Johns Hopkins.
In December of 2006 I went to Johns Hopkins. I was diagnosed with CREST scleroderma, Sjogren's syndrome, and Fibromyalagia. My ANA was elevated. My baseline echocardiogram was normal. My baseline PFT was mildly decreased diffusion capacity but still within normal range. My gastric emptying study showed delayed emptying. I have started noticing tightening of skin in my hands and feet. It is rather painful.
I guess you probably didn't want this much information, but it is a long process to getting diagnosed with this stuff. I hope this will help you.
Take Care,
Nan

#4 oddone

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Posted 24 February 2007 - 05:38 AM

Husband diagnosis at age 38, thought 1 year prior that he was starting to get carpal tunnel. Felt very arthritic in hands and knees.
His diagnosis is Scleroderma Diffuse Systemic Sclerosis.
The main problem at the moment is skin involvement (systemically) - 29.5/51 on the Rodnan Skin Score.
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#5 Margaret

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Posted 24 February 2007 - 07:11 AM

Hi Kelly ,
My son, Gareth, is 18y/o and was diagnosed last fall with sine Scleroderma after his swallowing study showed Esophageal dismotility. He's DS/autistic and was grabbing at his throat. He had also lost 10#'s since July without dieting. After the gastro doctor saw the esoph dism. he had blood drawn and Gareth had a positive ANA titer, high sed rate, and positive Anti-RNA Polymerase 1/111. Repeat blood work the end of Jan were also positive. He's had the dysphonia since Nov, fatigue, and major 'brain fogs' a lot of days. His Pul function test from Tues. shows restrictive pul disease. He's got an appt with Dr Medsger for March 7th. He has no Raynauds symptoms, skin or finger issues, or tet (spots).
Take care, Everyone.
Margaret

#6 ssakar

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Posted 24 February 2007 - 08:03 AM

I was diagnosed with Raynaud's Disease at age 39.......my fingers were turning blue. Approximately 6 months later, I noticed the skin on my entire body was becoming very tight/shiny....everyone thought I had a beautiful tan - but needless to say I NEVER got out in the sun. My muscles/joints started to ache and I couldn't hardly climb stairs anymore. I was finally diagnosed with Scleroderma and ILD in October (age 41). The last 8 months or so I have been dealing with acid reflux and stomach problems.

I feel I could have got a better grip on this disease (Sclero) if I would have been able to keep my 3 month followup appointment with the rheumatologist. that diagnosed me with Raynauds. I went almost 2 years without seeing a doctor because I didn't have the MONEY!!!

Sakar

#7 Michelle

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Posted 24 February 2007 - 09:12 AM

My husband was diagnosed at 36. At first, doctors that he had carpel tunnel. After a few months of this, he started to have severe joint pain and Raynaud's. His diagnosis is limited scleroderma. Main symptoms at this point are the joint pain, Raynaud's and acid reflux.

Michelle

#8 susie54

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Posted 24 February 2007 - 06:20 PM

First symptoms were pain, numbness that traveled around, shortness of breath followed by muscle pain and weakness, head pressure and headaches, hurt to walk on feet. First lesions did not appear until 9 months later. I was diagnosed with MS first and then four years ago finally I showed up with anti body of SM-RNP in high titers. Diagnosed then Mixed Connective Tissue disease.

#9 HeatherT

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Posted 25 February 2007 - 07:01 AM

Hi Kelly,
I am a 36 old new mother (sort of...she's 17 months now). I was diagnosed when she was 6 months old, after I had my carpal tunnel release surgery.

My pregnancy was very uncomfortable but fine and delivery proved to be absurdly long. I ended with a cesarean but very healthy girl. Getting pregnant took a long time and eventually I had to take progesterone, which was successful.

I have diffuse systemic scleroderma with skin involvement, GERD, tendon friction rubs and lose of range of motion in all my joints.

Let me know if you want to know anything else.

Heather

#10 janey

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Posted 25 February 2007 - 08:14 AM

KellyAnn,
I was diagnosed at 49 with dSSc and Polymyositis. First symptoms were carpal, then Raynaud's, skin tightning on hands and curling fingers, IBS, muscle weakness, fatique, swollen knee, and pneumonia.

We do have a section on pregnancy and scleroderma that you might find interesting.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#11 memeto2

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Posted 25 February 2007 - 12:18 PM

i was diagnosed at age 37,i had numbness in my hands and felt really tired,but I didn't go to the doctor for that I just brushed it off...until my leg swelled up and I finally went ,and they found I had a blood clot,and did blood work and discovered I had scleroderma.i have been to john hopkins and the dr there says I have limited,but my reumatologist says it is diffuse,i have sausage fingers,tendon rubs,my mouth looks differant because my lips are shrinking.im not as tired as I was this time last year,so things arent that bad right now.take care memeto2

#12 Sydney

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Posted 02 March 2007 - 07:37 AM

Hello,
I am new to this site but have had CREST (limited scleroderma for a very long time). I was diagnosed 24 years ago at the age of 21. I would say that I have done well over the years. My Raynauds (affects hands and feet) is bad but I try to keep as warm as possible. Of course, I get the infections that are slow to heal on my hands and have had a few very bad ones on my elbows. But for me, the worst thing has been the telangietasia's which are extensive! I have been having them lasered (on visible areas ) for approx. 13 years on and off. Anyway ..... it's nice to meet everybody in cyber space.

Sydney (in Florida)

#13 barefut

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Posted 02 March 2007 - 11:33 AM

KellyAnn,

I was diagnosed with sclero at age 40.

My first symptoms were hair loss, flu-like aches, fatigue and positive ANA.

6 years later, Raynaud's.

1 year later what got me referral to rheumatologist was a new doctor :rolleyes: , as well as higher ANA, puffy hands, loss of range of motion in shoulders and hips and skin crawlies in addition to the continuing hair loss, aches and fatigue.

I don't think I had any symptoms before my first pregnancy. I suspect my pregnancies were a trigger.

#14 Louxx

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Posted 08 March 2007 - 09:51 AM

Hi KellyAnn,

I was diagnosed with linear/morphea scleroderma when I was 7 or 8 years old.
My first symptom, that made my mam bring me to the doctors, was a colour and texture change to the skin on my left leg.

#15 Clementine

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Posted 08 March 2007 - 10:57 AM

Hello,
I was 38 when diagnosed. I had my first symptom when I was around 28, which was Raynaud's. I also had hypothyroidism. Later came the red dots ALL OVER my face. Then GERD hit about five years ago. Then, what finally made me realize I was sick was shortness of breath and flu like symptoms. I have sine scleroderma so I did not have any skin problems that would have been a good hint that it was scleroderma.
Jennifer

#16 deeter

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Posted 08 March 2007 - 02:20 PM

Hi kelly,
I was diagnosed with diffuse scleroderma at age 60 in April of 2004. Initial symptoms were carpal tunnel type pain and raynauds starting in the fall of 2003. At this time I am doing well. deeter

#17 Kathi

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Posted 08 March 2007 - 04:42 PM

Hello Kelly!

I was diagnosed with UCTD in September of 2004. I was 43.

My first symptoms started many years ago. I suffered from endometriosis from a very young age as well as IBS symptoms. Also, I kept injuring my joints doing "normal" things. I tore my rotator cuff while bowling. I tore the ligaments in my ankle by falling on a curb. I tore my meniscus when I turned around to answer a door. No one has that much bad luck with their joints, do they?

No one took me seriously though, until I had a hives-like rash that lasted over 3 years. The general practitioner said chronic hives. The dermatologist said acne. Nothing worked. I then got excruciating lower back pain that would not go away. I could barely walk because the pain would radiate to my hips and legs. By the end of the day, I felt like my legs were made of lead and every nerve ending was on fire. I could barely lift my arms to wash my hair. It was a horrible time.

I found a new general practitioner. She thought I had MCTD and suggested I find a rheumatologist. I did. He was more concerned with my hair color (blonde) than my symptoms. Told me I had fibromyalgia and to go home. I didn't have any of the pressure points though...

My mom has Lupus and she talked to her rheumatologist. He agreed to see me and the rest is history.

I'm sorry the post is so long. I hope I haven't bored anyone to tears. And maybe, someone out there can say "she's just like me!"

Hugs,

Kathi