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#1 summer

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Posted 18 March 2007 - 11:27 PM

Hi everyone,
I had a visit this morning for a second opinion with a rheumatologist at my local Hospital.
She seemed very nice and down to earth to talk to and didn't seem in a rush to shove me out the door. She examined me and thinks that I have CREST or limited Scleroderma but still isn't 100% sure. She said that I have the beginning of nail fold capiliaries on my fingers and with 2 swollen fingers on my hand and with the high ANA she has strong suspicions that this is the case.
I had a blood test today for SCL-70 and an Anti centromere antibody test and Urine test. She also thought that my thyroid gland looked to prominent and maybe enlarged. I also saw a Scleroderma Nurse at the hospital who asked me whether I was interested being in the Scleroderma Database where they can collect information (confidentially) every 6/12 months or so on all Scleroderma patients. Apparently this data base is going to be international this year!. Of course I agreed to do this the more info the hospital gets the better it is for all Scleroderma patients. My next visit is in 3 weeks time where I get to see her for the results of the test and also another Scleroderma doctor for a more thorough examination. I finally feel confident this time that I have chosen the best place for doctors to treat me.
What I was wondering is for all those that have CREST/Limited Scleroderma if you don't mind me asking is exactly how has having cRest/limited sclero affected you physically and did you have a positive ANA or SCL-70/Anti centromere when first diagnosed, and if or what organs have been affected over what period of time?. I hope that you don't feel that I am intruding on you all but am curious!

Kind Regards
Celia

#2 Margaret

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Posted 19 March 2007 - 02:56 AM

<<did you have a positive ANA or SCL-70/Anti centromere when first diagnosed, and if or what organs have been affected over what period of time?. I hope that you don't feel that I am intruding on you all but am curious!
Kind Regards Celia>>

Hi Celia ,

I can only speak for my son. He was diagnosed last Oct with esophageal dismotility after a swallowing test. He also had a 15# wt loss at the time and a high sed rate. The blood work done in Nov. showed negative ACA and Sclero AB autobodies, but postive Anti-RNA Polymerase 1/111 and a positive ANA. Since then, he has also had a PFT done that showed some restrictive lung disease.

There's some really good info in the medical section on the types of blood work and from what I have learned, not all sclero pts show positive test results but can still have the disease.

Take care, Everyone.
Margaret

#3 nan

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Posted 19 March 2007 - 04:37 AM

Celia,
I was just diagnosed in December, 2006 with CREST. I also have Sjogren's and Fibroymyalgia. I had a positive ANA. All other bloodwork was fine, as were urine samples. I am exhausted all of the time. At this point my digestive tract is messed up- GERD, watermelon stomach( rare stomach disorder that some Scleroderma patients get, it's lesions in your stomach that can bleed and cause anemia), slow emptying of stomach, and constipation. Raynaud's is severe with lots of pain in feet and hands. I do not have any skin hardening at this time. My PFT and echocardiogram and chest xray were ok. Feel free to email me at any time. When I asked my doctor if I could get worse. She said with Scleroderma you never know what can happen. It is so different for each individual.
Nan

#4 Claudia-DR

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Posted 19 March 2007 - 05:12 AM

Hi Celia:

I'm sorry you've been diangnosed with CREST scleroderma. Luckily these days there's great medications that help control most symptoms of the disease.

I have CReST with + ANA and SCL-70. So far the only organ involved in my case is the skin. I feel OK most of the time except for the fatigue (like Nan above described). The Raynaud's is also bad sometimes, but I take Norvasc and use a paraffin wax kit which helps.

Good luck to you and know that we're here for you!

Best,

Claudia

#5 Heidi

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Posted 19 March 2007 - 05:35 AM

Hi Celia,

When I first saw my rheumatologist 5 1/2 years ago, I had a positive ANA and he was pretty sure I had limited scleroderma. I have Raynaud's, Esophageal Dysmotility and Telengiactasia. I have very limited skin involvement....some hardness and tightness in my hands (esp. along outside of both index fingers)...but it is minimal and I have full function of my hands. When I first got sick, I too had horrendous fatigue and terrible joint pain. Now both of these symptoms seem to be well-controlled with medication. I also had terrible neuropathy which is also now controlled with medication. I have had two PFTs and they show mild obstructive lung disease (not restrictive which is what you usually see in scleroderma). My rheumatologist has never actually given me a diagnosis of CREST (says he doesn't use that nomenclature) or limited scleroderma because, according to him, I don't have enough skin involvement. So, my official diagnosis is "undifferentiated connective tissue disease".

Warm wishes,
Heidi

#6 Sweet

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Posted 19 March 2007 - 06:18 AM

Hi CED,

I have CREST, and I have the RET and the beginnings of S. I have a high positive ANA and also a positive Centromere. For me physically, I deal with extreme fatigue, joint pain, especially in my hips, shoulder and some fingers. That's about it.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 summer

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Posted 19 March 2007 - 03:53 PM

Thank you every one for answering my post.
Andyko I also live in Melbourne Australia in the suburb of Pakenham. My rheumatologist appt was at Monash Medical Centre in Clayton I have been a little unsure whether to stay at Monash or go to St Vincent's in Melbourne as I have found out they do have a Scleroderma clinic there and seem to be more involved in Sclero than any other hospital. I do have an appt their in a few weeks and my husband thinks that I should go to get a third opinion.
Do you still go to St Vincents?
If so, what are the SClero doctors like?
Thank you also for answering my post it is much appreciated!

Kind regards
Celia

#8 summer

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Posted 21 March 2007 - 04:15 PM

Hi Andyko,
It certainly is a small world, we have probably past each other in the street!
My very first visit to a rheumatologist was a Dr in Dandenong, who didn't seem very forthcoming and I found it hard to talk to. I will probably still go to St Vincent's in Melbourne for a second opinion, the Consultant their now is Dr Romas. Monash is very good as well you just need a doctors referral from your G.P and then ring outpatients Rheumatology clinic and they can book you in as a public patient. My appointment at Monash was at 9.30 in the morning and I had to wait for nearly an hour to see a rheumatologist but it was worth the wait!
Everyone was very helpful and the rheumatologist explained everything to me, I didn't feel as though I was shoved out the door in a hurry!
Anyway Andyko if you feel as though you need to find another rheumatologist Monash is good. Hoping you feel o.k and your day is painfree. :P

Kind regards
Celia

#9 susie54

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Posted 23 March 2007 - 10:55 AM

Hi,

I have been absent on here for a long time and trying to catch up with everyone. So many new people. Great to have you all although I am sure you would rather be somewhere else. I was like Heidi, I had terrible joint and muscle pain in the beginning, now under control most of the time. I have also had terrible time with nerves in the beginning but the heat does bring alot of mine on.
Heidi, your comment on the obstructive lung disease is interesting. I also have that as mild obstructive but my DLCO dropped to 75% this time although my FEV and FEV1 are in the 100's. Did any of you have this and does your doctor recognize obstructive with sclero. I have mixed connective tissue . Just wondering. Susie54

#10 kelowna52

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Posted 23 March 2007 - 03:30 PM

Hi Celia, I have been going through all of this, for I believe, about 5 years now, and trust me when I tell you this, it's literally like a roller coaster ride, you don't know what's coming next. I can tell you this, I don't think you have to get all worked up. I was so stressed when all of this first started, yes it's not fun, not knowing what's next, but we can live with what's next, from my experiance. I have GI problems , body pain, migraines and etc., etc., but none of my main organs are involved, thank heavens. Now I know that this desease is very individual, and I hope the best for you. I don't know, I'm not a expert, I can only go by what I have experianced. There are a lot of people here with CREST and we all have differant stories, and I hope that yours, stays very simple and not complex. I think we all hope for that. I just try to live my life as best I can. I try to enjoy things I love to do. I try not to let this get the better of me. If you let it, it will. Take care.

Jackie S.

#11 Clementine

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Posted 24 March 2007 - 05:22 AM

Celia,
I have systemic sine sclero which includes CREST. Mine was diffuse so the lungs hit me all at once and that's how it was quick and easy to diagnose me. Mine started with Raynauds ten years ago, then GERD quickly followed. I've had hypothyroidism for ten years too. I hope yours does not go any further than limited.
Jennifer