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CREST And Confused

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#1 Cheri


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Posted 18 December 2007 - 06:34 PM

Hi everybody,

I posted once before when the doctor first thought I might have slero based on my being tired, achy joints and my blood test with Anti-Centromere of 1:1280. Since then I saw a rheumatologist doctor a week ago and he thinks I might have CREST. I have to have an echocardiogram and some kind of nerve test on my hands. I can't remember what it is. He also took a chemical blood test and another blood test. I go back in January. Anyway, a week ago I went to the emergency room because my heart was beating so fast (it was like a pounding feeling) and felt like I was going to pass out. I thought I might be having a heart attack (I have never had heart problems) and my blood pressure was 176/98 when I went to the hospital. I have always had low blood pressure - 112 at the most usually 100/60. They did an EKG and some test to see if I had a heart attack or a blood clot which were negative. When I left the hospital my blood pressure was 136/87. Since then I have had off and on where my heart feels like it is pounding but not as bad as that night. Today I just haven't been feeling well (just like something isn't right) and tonight my heart feels like it is doing the same thing as the other night but not as bad. I know this sounds silly but I don't know how to explain it. It feels like with every little effort my heart beets really fast - it's almost like not so fast but more of a pounding - I guess that is the best way to discribe it. I know it's not a heart attack or anything like that because it's similar to the feeling I had when I went to the emergency room, only not as bad. Is this something that is normal with Scleroderma? All these weird things are happening and I don't understand them. I am also losing the padding on my fingers or something. It's like the meat part that fills out the tips of your fingers is not there, although when I wake up and they are puffy they look more normal as far as the padding goes. Has anybody else experienced this?

When I first went to the rheumatologist he was positive I didn't have Sleroderma he said because I didn't have hard skin on my face until he started doing testing and then he thought I might have CREST. Whatever is happening to me seems to be happening so fast - in the past two months, my finger padding has disappeared, I have puffy fingers in the morning and in the middle of the night it is hard to make a fist, lumps on the side of my hand that are growing, shortness of breath and my heart thing whatever that is. When I had my pulminary function test I had mild Intersestial lung disease or something like that and that test was a month ago.

I guess I'm just kind of scared and wonder if this is normal for Scleroderma or CREST or whatever I have or if any of you have experienced any of this? I don't know what is happening and why so fast. It just doesn't seem possible that in a couple of months I could go from feeling fine (other than really tired) to all this. And from what I have read if I have CREST, it is supposed to be very slow growing.

I'm sorry to be rattling, but any input would be really helpful. I've read everything I can find but sometimes it helps to talk to real people who are really experiencing things. I don't know who else to ask anything to.

Thank you so much for any help you can provide. I really, really would appreciate it. Also, do any of you have diffuse scleroderma with anti-centromere antibiodies? Boy, I have learned so much of something I had never even heard of a couple of months ago.

Thanks, again.

#2 janey


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Posted 19 December 2007 - 04:39 AM

I'm so very sorry to read about all the problems you have been experiencing and just within the past two months. Can things happen fast with Scleroderma? YES. In 8 months I went from extremely healthy to a frail woman that couldn't get up out of a chair, even if she had felt like doing so (which I didn't). My skin never hardened past my wrists and within 6 months after diagnosis and treatments I had no skin hardening at all; but I still have scleroderma. My rheumatologist just calls is systemic (SSc) but doesn't want to classify it any further (which is fine with me). He's confused about the lack of skin hardened, which could me that I have scleroderma sine scleroderma (scleroderma without hard skin). So not having hard skin on the face does not eliminate a diagnosis of SSc.

In reference to your heart problems, it could be a type of intermittent arrhythmia . Being intermittent, it wouldn't show up on the EKG if you weren't having one at the time. Check the link I provided and see if anything sounds familiar. I'm certainly no doctor, so please discuss anything and everything with the doctor. I have atrial fibrillations with is a type of arrhythmia so your description of your heart pounding sounds very familiar.

Puffy fingers and not being able to make a fist can be a sign of scleroderma, but also many other things. I haven't experienced the loss of finger padding, but I think others have.

Please be sure to write down all your symptoms, frequency, durations and descriptions. Take the list to your doctor. Some doctors diagnose more by one's symptoms than bloodtests since bloodtests are not 100% indicative of having or not having a particular disease. Hope this helps.

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

#3 WestCoast1


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Posted 19 December 2007 - 05:54 AM

Hi Cheri~
I am sorry that you have scleroderma. This a super place for questions, and answers. I have also heard that CREST is more of a slow process, but each person is different. Just as quickly as the symptoms come, they could also dissapear. Please take extra special care of yourself right now and keep your team of doctors close by.


#4 lizzie


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Posted 19 December 2007 - 12:16 PM

Hi Cheri, the problem with systemic sclerosis is that it manifests differently in deifferent people and I think that there really is no such thing as 'normal'. For instance I have been diagnosed as having probable limited cutaneous systemic sclerosis (also sometimes called CREST) - but I don't have anticentromere antibodies- I have nucleolar pattern which I think in fact is more commonly associated with diffuse disease. When iagnosed I hadvery mild skin thickening on my fingers -18 months later I have mild skin thickening/tightening on the hands, feet, ankles, forearms and face. Sometimes I feel unwell and tired but more often I feel OK, I still work full-time.

Unlike other disorders where there is often a common pattern to the course of the disease, the problem with SSc is that it can take a long time to work out whether you even have it and even then is often very difficult to predict what course it will take, this is very frustrating when what we want to know is what have I got , and what will happen.

I do know exactly the feeling with the heart you are trying to describe, it was the problem that led to my diagnosis - my general practitioner referred me the cardiologist because of the symptoms I was having and it was the cardiologist who referred me to the rheumatologist bacuse he thought I might have a connective tissue disease. I still have the palpitations and fast pulse a lot of the time but have noticed though that it is worse when I'm stressed or upset, I actually feel like I am shaking in side sometimes - so try to stay calm! I also know exactly what you mean re the loss of the digital pads, it was one of the criteria that led to my diagnosis. Like you , in the morning they look almost normal because my fingers are swollen.

Try not to worry too much

#5 Cheri


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Posted 20 December 2007 - 06:24 AM


Thank you very much for your answers. It really helps to read feedback from other people. The link to arrhythmia was especially helpful. When I go to the doctor next month I am going to make a list of everything going on. I am really thankful for this website - it is so informative and all of you seem so supportive of each other.

I wish you all a Happy Holidays and Happy Holidays!

Cheri :)