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New And Don't Know Where To Start


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#1 Jon

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Posted 22 December 2007 - 06:38 PM

My name is Jon, I was diagnosed with early signs of CREST with ANA readings and Centromere. I don't know anything about the patterns or amount yet. I am a 43 year old male and THINK I have had Raynauds for about 3 years, maybe 4. I really didn't know I had it until recently when my fingers were turn white fairly frequenlty. I used to think the numbness was just the pinch in my lower back.

I don't have many attacks during the summer. Last summer I remember two of them. Now in the winter months I have daily attacks and my hands seem to feel cold all day long. I use a parafin bath so the symptoms are treated regularly and quickly. I have attacks in my feet but not as frequent.

My doctor put me through an eco and pulmonary baseline test. Both came back normal. I have no other symptoms of CREST other than puffy fingers. I have been cracking my knuckles since 9 years old. I figured that was the issue. My wedding ring still fits.

I have combed these forums and see that many of you have experienced other problems before the RP. I have so many questions, I don't know where to start.


Blessings and thanks for a reply.
Jon

#2 jefa

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Posted 22 December 2007 - 11:45 PM

Hi, Jon, and welcome to the ISN Sclero Forums. I am glad you have found such a good place to explore your symptoms and discuss them with the other helpful members in our group. This is an excellent resource for information and a well of warm support. I hope you will find this page on CREST Syndrome helpful.


Warm wishes,
Jefa

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#3 epasen

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Posted 23 December 2007 - 05:48 AM

Jon, welcome.

Sorry to hear about diagnosis, but I can assure you this is THE right place to come with guestions and problems. You'll find great support here :) I have had raynaud's several years too, and winters are really difficult for me too.

Happy holidays to you too,
Emmi

#4 Snowbird

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Posted 23 December 2007 - 08:14 AM

Hi Jon

Welcome! I'm new to this forum as well. I believe you will find everybody here very knowledgeable in this disease and very helpful in answering your questions. I too have recently been diagnosed with Systemic Scleroderma Limited CREST. My ANA was very high as I suspect yours is and mine was also in the centromere pattern. My understanding is that <1:40 is the normal range (although I read somewhere <1:60 (?) so anything high should be investigated further (hence, that helped with how I was diagnosed). Bloodwork alone was not enough for my diagnosis, I was told some of the other things in CREST also needed to be present. I do not have Raynaud's but several people on this site do and I'm sure they will be able to help you out with any questions on that. Did your diagnosis come from your Rheumatogolist? Jefa and the other ISN rep's supply us with great links to information, I found them really helpful for me. I read a lot of stuff everywhere on the net and managed to scare myself pretty good in the beginning, try not to do that to yourself. Here you will find factual information. Ask all your questions, this is the place to be!

Ramona
Sending good wishes your way!

#5 truman

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Posted 23 December 2007 - 09:27 AM

Hi Jon:

I was diagnosed with CREST in August 2007, but had many symptoms before then. Had Raynauds for the last 16 years. Recent calcium deposits brought me to the rheumatologist who put the diagnosis to the symptoms.

I don't know what particular information you are looking for, but feel free to ask questions and I'll do my best to answer them, as hey apply to me.
Tru

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

#6 Sweet

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Posted 23 December 2007 - 12:40 PM

Hi Jon,

Welcome to the Sclero Forums. I'm glad you've decided to join us. I'm sure sorry it's due to CREST however.

As the questions come to you, pop them out here and we'll see how we can help.
Warm and gentle hugs,

Pamela
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#7 Jon

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Posted 23 December 2007 - 03:09 PM

It was a reumatologist that diagnosed me. I asked about what he found in the blood and/or urine. He mentioned Positive ANA and Centromere. He didn't say Centromere was a pattern per se. Is the prescence of Centromere that of the ACA antibody? He thinks because of the presence of these two and puffy fingers that I have early signs of CREST. Does that mean I have Scleroderma? Is there a specific marker for Scleroderma?

He did a cursory inspection of my nailfold and said they looked normal. But he did it with a drop of gelatin on the finger area with a magnifier. He didn't do the capillarscopy. If my nailfolds are normal, is it possible I just have Raynauds or will I see a progression. That is why I asked about the marker for Sclero. I have been cracking my knuckles since I was 9 so I figured I was just paying the price, and my wedding ring still fits..I did have it slightly widened a few years back but no major difference in its size.

What other tests will I go through to determine where I am and how (if) will the disease progress? Can limited SSc turn into Diffuse SSc? So many questions.

Can anyone explain the skin thickness score? As of now I certainly have Raynauds and "possible" sclero because of the "sausage" fingers?

I have no other signs of CREST than that of RP and the puffy fingers. Has anyone started with just RP and progressed through many years before seeing other signs of CREST?

Thanks,
Jon

#8 truman

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Posted 23 December 2007 - 04:36 PM

Jon:

The “C” stands for calcinosis, where calcium deposits form under the skin on the fingers or other areas of the body. The “R”, stands for Raynaud’s phenomenon, spasm of blood vessels in the fingers or toes in response to cold or stress. The “E” represents esophageal dysmotility, which can cause difficulty in swallowing. The “S” is for sclerodactyly, tightening of the skin causing the fingers to bend. Finally, the letter “T” is for telangiectasia, dilated vessels on the skin of the fingers, face, or inside of the mouth.

Usually only 2 of the five symptoms of the CREST syndrome is necessary to be diagnosed with the disease.

The above is from the UMMC. I have the C, R and T. Yes, I do get puffy fingers but also ankles and feet due to high blood pressure, for which I take water pills. I get the calcinosis on my forearm, which is extremely painful at times. I tend to use moisturizer and keep this area agile in order to reduce the pain. In time, months, these calcium deposits will disappear,

Pay close attention to the Raynauds. If left unattended, you could develop an ulcer of the area, as I did. I just had half my toe amputated due to this ulcer, and as it looks so far, the rest of the toe may need to be removed.

All in all, at this stage and at my age in life, this seems to be somewhat manageable. I'm presently on short term disability from work, but don't know if I can return based on new new symptoms and results of this amputation.

Let me know if I can answer any additional questions and in the interim, please have a happy and health holiday and new year.
Tru

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

#9 lizzie

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Posted 24 December 2007 - 04:24 AM

Hi Jon, I'm sorry you are having to deal with all the uncertainty about the possibility of having scleroderma at a Holiday time. I thought I would try to answer some of your questions so here goes!
I think when your Dr said Centromere that he was probably referring to anticentromere antibodies or ACA for short. Having ACA does not necessarily mean you have scleroderma, they can be present in primary raynauds as well as other conditions. They are however frequently present in people with limited limited cutaneous systemic sclerosis.
As you have probably now realised, knowing if or how your condition will progress is one of the big problems in possible,probable or even definite SSc. Everyone is different and unfortunately it generally seems to be a case of wait and see. Having said that, blood tests and other tests to monitor lung, heart, kidney and Gi tract function can ( and should) be carried out to give an early indication of problems that may be happening. You also ask about skin changes and score. there are three recognised phases of skin thickening in SSc. the oedematous phase where you cabn have tight or puffy fingers , hands, feet, face etc. This lasts a variable length of time. The puffiness is then gradually replaced by tickened tight skin- the rate and extent of this varies acording to subtype of SSc ( diffuse more rapid than limited) and the individual.After several years, is the atrophic phase where the skin may gradually becomes softer and thinner.
In the Rodnan skin score, 17 body areas are assessed using a 0-3 scale for thickness.

I was found to have raynauds and positive ANA ( nucleolar pattern) about 18 months ago and was diagnosed as having probable limited cutaneous SSc. Shortly after my fingers became puffy (rings didn't fit), and have now got some thickening and some tightening on fingers, hands, face, forearms, feet and ankles.I have also got CREST . One tiny calcinosis on my finger. some Oesophagus problems ( he E in Crest, but spelt differently in the UK ! -should be CROST) and a few hardly noticeable telatengasia on my chest problems, but am otherwise fit and well.

Lizzie

#10 Cheri

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Posted 24 December 2007 - 05:48 AM

Hi Jon,

I am really sorry you were diagnosed with CREST which my doctor said is also Limited. My doctor also said it was Progressive Systemic Sclerosis, and I guess they are all the same? I have lots of questions too. But, I can tell you what tests they took - a chemical panel, pulmonary function test, urine test, regular blood tests, and I am going to have an echocardiogram and some kind of nerve test. It starts with an E. I also had an EKG. I haven't heard the results of the chemical panel yet, and my appointment for the echo and the other E test haven't happened yet. They are setting them up. I was really scared too, because mine seems to have gone from nothing to all of a sudden Raynauds, puffy fingers, can't make a fist during the night, heartburn, really sore joints (which I had before) and very tired (which is why I went to the doctor in the first place). This has all happened in about two months.

This forum is great though, everybody is so helpful, and just reading about other people and what they say is very comforting. Everybody seems to be really supportive. I used to be really scared, and you will probably find that you will become more peaceful with everything as you go on. Once I didn't die in the first month (that's how scared I was), I started accepting. At first though, everything on the Internet was so scary and since I had never heard of Scleroderma I read everything I could find which REALLY scared me. Basically I stick to this support group now as they seem to have the most up-to-date information and it just feels good that you can talk to somebody who understands what you are talking aobut.

I wish you lots of luck - keep me posted on how you are doing.

Warmly,

Cheri

#11 Snowbird

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Posted 26 December 2007 - 11:18 AM

Hi

My doctor seems to have done the same as Cheri's....he also said Systemic Scleroderma Limited/CREST (same thing)...and he did the bloodwork, pulmonary, echo-cardiogram, etc, too. My rheumatologist checked under my nails and my skin (especially on my hands as well) but I don't remember him using any lubricant, not to be sure he didn't though?? I believe I remember him looking straight down and through my nail bed...he used some kind of special light too....but he didn't say mine was normal...he said I was not full blown yet. He said it is very important for me to continue being monitored by a Rheumatologist with this disease...in case complications arise (pulmonary, etc), but your doctor likely told you the importance of that too? I find it's only now that I am making lists and such as I have learned from helpful people on this site so that I can keep track of things...I think I was too blown away by the diagnosis in the beginning to think straight ...as I'm sure everyone one of us was. Time will hopefully get you there as well.

My rheumatologist also said the pattern (centromere) pointed to Systemic Scleroderma Limited Crest. I believe that the Sc1-70 pattern points to Diffuse...someone else on the site might be able to assist you better with this as I'm still learning too?

Hope even through this all, you and everybody else had a Happy Holidays.

Ramona
Sending good wishes your way!

#12 Vee

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Posted 27 December 2007 - 10:54 AM

Hi Jon,

Welcome to the family. I'm sorry you're facing this right now, but as one of the best sclero specialists I've met has put it, "If ever there was a time to get this awful disease, it's NOW". Because of the wonderful research and findings going on, there are many treatments for whatever process you are in or experiencing with sclero. I was told in 98 that I had limited sclero, and just last year I was told by my specialist that I have diffuse. Either way, the best thing you can do is to treat and stay on top of any "symptoms" you are having, and not just looking at this as "one" disease. Make sure you find a knowledgeable doctor. One that knows sclero and has experience with it. Don't be shy to ask these questions to your doctor. Even if you love your doctor, it's not possible for them to know everything. Please come and post often, there is always someone here to listen and respond. I wouldn't have made it thru the tough years without this bunch.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee