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How long do you think you had sclero before you were diagnosed


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#1 JJ-Knitter

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Posted 31 August 2008 - 02:32 AM

Hi All,

After reading all the posts about the difficulty in getting diagnosed with sclero, I wonder how long everybody thinks they had sclero before the diagnosis (diagnosis), and how do you tell anyhow?

Me? I'm guessing less than 5 years and I'm basing that on a series of high ANA's, livedo, and the appearance of the first teleangectasia.

I'd also be curious to know how many rheumatologists (*) you saw before the diagnosis and whether or not it was actually a rheumatologist who had the Eureka! moment. In my case it was a pulmonologist.

(*) It was only one, but I sure made a lot of boat payments for my general practitioner's practice :lol:

Warm hugs,

JJ

#2 Kristine

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Posted 31 August 2008 - 06:27 AM

Some kind of diagnose, doctors said when I was born...22 years ago...and in that time there wasn't medicine to treat it, but it was incorrect...real diagnose I found last year...and now I hope soon will be better :)

Take care :)

#3 bowbec

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Posted 31 August 2008 - 07:13 AM

JJ,

Initially I had painted all day and was so sore I could hardly move the next day. After a week of this, I went to my general practitioner, She prescribed a dose pack of steroids which I responded well to.
I made the appointment with my Rheumatologist the same day but of course he couldn't see me for 6 weeks. (I was seen by him 5 years earlier just to get pt/dr relationship established because my Dad died with Systemic Lupus). After 17 months of being treated by him for RA, I was diagnosed with scleroderma . Blessed tho, the only medication he changed was adding Procardia for my Raynauds. (The onset of Raynauds with finger ulcers is what changed the diagnosis)

I have since started cyclophosphamide for lung involvment and stopped Methotrexate injections.

I love my Rheumatologist. He is one smart cookie! He is not on my insurance but I still see him. He is worth every penny!

I'll be interested to heard others reply.
Good Topic!

Becky
Chattanooga, TN


Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#4 Margaret

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Posted 31 August 2008 - 07:54 AM

Hi JJ ,

As far as Gareth (age 20) goes, I know he had a very high sed rate up to 2 years before, but was also sick with infections and severe hip dysplasia before the diagnosis of Sclero. He was diagnosed with GERD at age 10, but that is common in kids with DS due to their low muscle tone. He had endoscopies every 18-24 months due to the GERD and nothing was abnormal after the initial endo and he was put on meds.

His pediatric gastric doctor was the one who ordered his swallowing study (age 18) because he was complaining about his "food being stuck" and I was worried about the rapid 10 # weight loss that summer. When that surprised everyone and showed esophageal dysmotility, he immediately ordered all the blood work for Sclero. His ANA came back positive, speckled pattern, diffuse: his sed rate was 98: and his Anti-RNA Polymerase 1/111 was postive. That is when he was sent to the rheumatologist who said it was UCTD, not sclero like the gastro doctor said. It was from Oct to June before they started him on Plaquenil.....only because I had read about Plaquenil on this forum and kept bugging them to 'do something!!!' By then, he had lost over 20 #s and was sooooooooooooooo tired all the time. The rheumatologist wouldn't call it sclero because the only symptoms he had was the esophageal dysmotity, fatigue, wt loss, loss of vocal cords, and restrictive lung disease --- no skin issues or Raynaud's.

At his last rheumatologist visit in May, she told me he is 'starting to show signs of Raynaud's' and to watch for finger ulcers. So, I guess Gareth was diagnosed fairly quickly compared to some here.

Take care, Everyone.
Margaret

#5 razz

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Posted 31 August 2008 - 08:43 AM

JJ,

I agree this is a good question. My first symptoms were in the winter of 1997. My fingers would go numb after being out in the cold and when they warmed back up, it was painful. Thinking I had early stage arthritis, I went to see a rheumatologist in April of 1998. Fortunately that rheumatologist was familiar with recognizing symptoms of scleroderma. After observing the constricted blood vessels in my fingernail bed, she gave me my diagnosis of scleroderma. I would say it took 5-6 months from my first symptoms. The interesting part is the rheumatologist asked me was how did I know I should see a rheumatologist. (I guess she was surprised I came without a referral). I told her I thought I had arthritis.

Hugs,
Razz
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#6 Sweet

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Posted 31 August 2008 - 10:09 AM

Here is a link to a previous discussion on this topic here in the forums. http://www.sclero.or...owtopic=338&hl=
Warm and gentle hugs,

Pamela
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#7 janey

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Posted 31 August 2008 - 11:03 AM

JJ.
I estimate 10 months. I was feeling great up to October of 2002, then my stamina, strength and overall wellbeing started to deteriorate. By the time I was diagnosed in August 2003, I had lost 60 pounds, had pneumonia, Raynaud's, GERD and all that goes with that, curling and swollen fingers, etc. etc., etc. By the time I saw the rheumatologist I knew what I had. He agreed and started aggressive treatment. I consider myself lucky in that sense.

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#8 smurfette

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Posted 31 August 2008 - 11:07 AM

The old forum asked the following questions and so I will answer them here seriatimHere's a few questions...

1. How long have you been diagnosed? Since 1998 when I saw my doctor and showed him my white fingers and he recognized Raynaud's right away and took a blood test to determine if it was primary or secondary Raynaud's. I had Reflux since I had been pregnant with my first child (he was born in 1984) but I never really paid much attention, because everyone I knew had reflux and I also had fibro and I got pregnant again in 1988-9 and when the reflux worsened I fully assumed that it was just part of being pregnant. I am not very large and I have no place for the baby to go so I get a lot of heartburn and reflux when pregnant. It did not go away, but with 2 active kids I was too busy to think about me until the Raynaud's and fibro made me stop and finally talk to my doctor. in 1998.

2. Do you feel your disease is currently progressing? - My lungs are getting a bit more complicated, I have developed(or has it been discovered?) gastro paresis, my reflux just won't quit and I am waiting to see if my endo-botox worked to help the paresis, so I am a work in progress. My hands and feet swell and feel tight. My hands are painful often. I do not know if it is my fibro or the scler. My gastro issues may be compromised by the hiatial hernia as well. I am just a puzzle! Things seem to get a bit worse here and there. I consider every day an adventure. I can never be sure what the day or night will bring. Never be sure that food or drink will be ok. So that is a question that I just cannot really answer.

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

4. Do you feel you have it under control? Sometimes and somethings

5. What is your main symptom now? Gastro issues - reflux and spasms and nausea and pain, migraines, swelling and pain in hands and feet - your basic package, I did ot go for the all inclusive, I am on the American plan

6. What was your main symptoms at time of diagnosis? Raynaud's. gerd and fibro.
Smurfette

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#9 Amanda Thorpe

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Posted 31 August 2008 - 11:51 AM

Hello JJ

I had no idea I had SSc until I was told by the first rheumatologist I saw, after the symptoms had been rapidly progressing for 7 months, prior to that progression had been slow. Before the rheumatologist 3 dermatologists told me it was necrobiosis lipoidica, then 1 of the 3 said morphea. Oh yes let's remember my general practitioner who diagnosed leaking veins before anyone else came up with an alternative.

It was never a diabetic disease but was morphea that then took 3 years to become SSc.

Thankfully the first rhuematologist referred me to see Prof Chris Denton a leading rhuematology expert based at a centre of excellence for scleroderma at the Royal Free. Any problems and I ring the sclero nurse for advise or speeded up appointment as necessary.

Actually looking back I have had bowel dysfunction for years (was told IBS) and bouts of heartburn and fatigue, creakingand painful joints so I reckon SSc has been creeping up on me my whole life.

Amanda

...it's my disease and I'll cry :mellow: if I want to...
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#10 HouckRN78

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Posted 31 August 2008 - 12:08 PM

I've had the raynaud's for maybe 5yrs but didn't think anything of it. My thyroid problem makes me cold intolerant anyway so it didn't seem strange. A little over a year ago I began having terrible fatigue then this spring my feet were going numb and tingly. I've been to my doctor 3 times, a neurologist who found the Scl-70, and a rheumatologist who knew less about SSc than I did. That was 2 1/2 mo ago and things have been getting worse in the last month so I'm heading back to my doctor this week to push for a referral to a scleroderma specialist. I'm hoping the labwork, raynaud's, neuropathy, and now arthritis to my fingers will be enough to convince him to let me look deeper into this. I guess the short answer to this question would be more than a year and still waiting. I would appreciate positive thoughts for perseverance and an open minded doctor.

Love to all,
Heather

#11 smac0719

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Posted 31 August 2008 - 01:07 PM

I believe at least 2 years. In looking back at my health history though I see several things that are precursors of the disease.

I saw 3 rhuemo's before the being diagnosed and it was a dermatologist who diagnosed it. Interestingly enough though a former primary said she felt sclero is what I had appx a year before the diagnosis.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 Nina

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Posted 31 August 2008 - 04:07 PM

I honestly believe that I've had some form of this disease since childhood. I've had gastro problems (IBS) since I was in my 20s. I am now 59 years. old. I had endamietriosis when I was 32 years. old ~ and have had many problems since then. Energy level/aches and pains/depression/sleep problems. Finally saw a rheumatologist in 1996/97. Saw three different ones before Sclero was mentioned. I forget now who it was that mentioned Raynauds, but that was just mentioned in passing, nothing was done about it. The second rheumatologist I saw diagnosed me with Fibromyalgia, so everything has been blamed on it for years.
It's just so crazy to hear all of these stories ~ what is wrong with our medical profession?? Scary at any rate.
I help my own for years (since 1997) ~ lost of pain etc. but nothing I couldn't handle. Now for some reason, probably too many years of stress, major stress, things have gotten much worse. Symptoms have gotten worse and new ones show up everyday.
thanks for asking the question, very interesting.
Much love,
Nina (DE)

#13 canon

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Posted 31 August 2008 - 04:09 PM

Will try to make this as short as possible and it won't be easy.

When I was 35? I developed gerd, esophageal spasms, stricture and an espohageal ulcer. I was NOT smoking cigars and drinking whiskey with the boys either!!LOL.
So 20 years later I still have the above and developed poor antrum motility 15 years ago and NOW Barrett's espohagus. At the time the esophageal problems started so did the raynaud's and it would come and go. When the poor antral motility started the raynaud's got worse. The GI doctor told me to have my ana checked every year, (the one 15 years ago) because she thought I might have a form of scleroderma but I needed a positive ana. Another doctor at that time told me I didn't have raynaud's because my combs test was negative, go figure. Not even going there. I had a real bad spell at that time with muscle pain, fatigue, bells palsy (both sides), very swollen lymph nodes under my arm which kept growing (0.5cm to 3.5cm and 15lb weight loss in one month),in which they removed because they thought it was cancer. NOT, then sarcoidosis, NOT, then I was treated for lymes? for 1 year with antibiotics. Positive urine but no positive blood. I felt great for 4 years after the antibiotics. Didn't need anything for my stomach and didn't have gerd and etc either. It was wonderful!!!

Menapause came when I was 48 and so did graves disease with hypothyroidism. I had my tsh drawn yearly anyway because graves is in the genes, father, sister and others. Anyway my TSH went from a normal to (50) in 6 months with a 50 lb weight gain with athritis, hair loss, (my eyebrows disappeared) :angry:, general swelling and bruising and an ANA of about 600 and + grave autoantibodies. We couldn't take the ones for hashimotos thyroid cause I had already started taking levoxyl, well we did but of course they were negative. With a multitude of things in between including 3 (+ anticardiolipins) 3 months apart. I was told about 7 months ago I had cREST with a multitude of things still going on, pulmonary, gi and skin issues. My rheumatologist thinks I have other connective tissue diseases also but can only diagnose limited scleroderma cREST variant. Soooo 20 years for a sure diagnosis of a least one connective tissue disease. Nightmare, maybe?? If it wasn't for my faith and finding you all I don't know what I would do. Doctors deal well with numbers and + labs. My labs are not always helpful. The visible symptoms are many. My nurse practitioner is the one who got things rolling in the right direction and talked me into staying with 1 rheumatologist. Thanks, Judy
A happy heart is good medicine.

#14 truman

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Posted 31 August 2008 - 11:03 PM

I began having numbness in my hands and feet in 1991 with teleangiectasia on finger tips, feet and face. The numbness turned into full blown Raynauds shortly thereafter. Went to see a general practitioner who did blood work and diagnosed Scleroderma. Never heard of it, so I cruised the internet and got so upset over what I read, I dismissed the whole diagnosis and stopped seeing doctors unless absolutely necessary. Although I dismissed the very idea, I subconsciously kept it in the back of my head. As the years went on, separate symptoms crept up that were treated by a new general practitioner I began seeing due to HBP. Conditions treated by my general practitioner were IBS, thyroid, Raynauds, cysts (which were the calcifications), etc. He referred to the teleangiectasia as being caused by smoking. Since each symptom occurred separate and apart from each other, the "string" was never formed to be diagnosed as one illness. I remember at one point the general practitioner becoming very irritated with me because I didn't heal properly and he'd ask what my problem was or what wasn't I doing that I was supposed to be doing.

The final diagnosis came last March 07. My elbow was getting stiff and the skin on my forearm very tight. general practitioner sent me to orthopedic doctor who had me in a cast for three weeks. Still not getting better, I went to see a Rheumatologist on a neighbor's recommendation who took one look at me and said CREST. Blood tests confirmed her guess. Ulcer developed on my toe in March 07 and my general practitioner, now aware of my diagnosis, continued to see me and try to treat the condition. Continually getting worse, in November I went to a wound care center but it was too late and I lost the toe.

In the interim, my Rheumatologist decided to quit the practice to teach at a University forcing me to find another. I found a great one through the recommendation of my general practitioner. My present Rheumatologist has a really good handle on my condition and I'm now on four major meds a day instead of the nine for all these years.

After everything I've been through these past years and a close call this past June, I am no longer embarrassed or afraid to say loud and clear, I have CREST. I think I've learned to handle it well both emotionally and physically. I'm greatly impressed with my little circle of doctors (dentist, rheumatologist, general practitioner, podiatrist) who if they didn't know what CREST was, now do. They work with me, we discuss alternatives and conditions and they are completely open to my educating them whenever possible.
Tru

It is what it is...........

#15 SueVer

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Posted 31 August 2008 - 11:13 PM

As for myself, I was diagnosed May 2007, and yet I think with gastro issues and skin issues; I would say I think had this disease since at last 1999. Amazing, how much I ignored and just never thought of them linking together.

Take care All,
Sue of Virginia Beach

#16 Peggy

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Posted 01 September 2008 - 04:18 AM

It took over a year of doctoring before I got the actual diagnosis of sclero. But when I think about it I've had an autoimmune disease since my teens. I started with being hypo-thyroid in my teens; then 7 years ago I dealt with terrible gstro problems that were mis-diagnosed as Celiac disease; then I had shingles (another autoimmune); then the real fun started. I developed peripheral neuropathy of my hands and feet that also led to swelling and extreme tightness of ths kin. It was a long year of going from doctor to doctor before I stepped in front of a rheumatologist whose speciality is sclero. She took one look at me and immediately knew I had Sjogren's and suspected Scleroderma. Now I have 6 different diagnoses of autoimmune diseases and they say I'm an autoimmune disaster. I struggle daily with this and have terrible reflux and gastro involvement, along with lung involvement. I also have skin involvement over my entire body and extreme pain in my legs and joints. My fingers are starting to curl like in the sclero pictures and that is really bothering me. I am on so many meds its terrible. The fatigue is terrible too and my life has changed so dramatically I'm not even the same person I used to be in a lot of ways. So much for being the energizer bunny............my batteries are dead.

Warm hugs,

Peggy

#17 JJ-Knitter

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Posted 02 September 2008 - 02:35 AM

Hi all!

Thanks to so many for responding to this. It's a question that's interested me for some time. My sense is that all of us think we were showing symptoms for a long time before getting a formal diagnosis, that it took a "constellation" of symptoms to get the correct diagnosis, and it's about 50/50 whether or not a rheumatologist made the diagnosis.

I think I was more relieved than anything else when someone finally put a name to what was going on. I could find out more about a specific disease, find out what sort of tests and treatments would be involved, and take an intelligent (well, at least I hope so) part in my care and the decision making process. Retaining some control over my life is very important to me.

If I could wish for two things for all of the people out there who are still struggling to get a diagnosis, it is that they get it quickly and that they are treated with dignity and respect.

Best wishes and warm hugs to all of us!

JJ