Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 CREST are the first letter of the symptoms of scleroderma. C-Calcinosis R-Raynauds E- Esophageal disfunction S- Sclerodactyly T- Telangiectasia. Calcinosis are the small hard pebbles that form under the skin. They push thru and hurt. I used to try to pull them or scratch them out. The skin on my chest was very tight and that is where most of the little stones were. After starting Minocin, the skin got loose and the pebbles went away. Raynauds is when the fingers turn white like the blood is drained from then, then they turn really blue or purple, then after a few minutes or more, they turn a bright red. All during the episode, the fingers are really cold. Rubbing them under warm water help the circulation to return. The whole episode for me would last possibly 15-20 minutes. Wearing gloves, even in the summer when in A/C helps. 3 months after starting Minocin, this symptom disappeared and never came back. Esophageal dysfunction has to do with swallowing. The throat gets tight and dry and the food will not go down. Even with water this can be very annoying and somewhat painful. I also have a hiatal hernia, so this was very disturbing. I lost 40 lbs. and became anemic. I can swallow now and even put on 20 lbs. Sclerodactyly is the symptom of the fingers getting thickened with excessive collagen and then becoming twisted and misformed. Thank God, I started Minocin before that happened. I caught it early with the Minocin. I can now lift the skin away from the fingers and the use of my hands has returned. Telangiectasia Are the little red dots that appear on the face, arms, legs. etc. I don't know much about them. I have a few that have never gone away. They sort of developed later. They are small. I think I have about 4 on my face. I just cover them up with make-up. If anyone knows how to get rid of them, let me know. My scleroderma could also have been classified as Sclerodactyly sine scleroderma or vice versa. That means that I have scleroderma without getting sclerodactyly like the rest of the people I met at the Scleroderma foundation support group. Some of them had gangrenous fingers and one gal had just had some fingers amputated. There are different symptoms of scleroderma. One that is very noticeable is the tightening of the mouth. I guess by now you all know that I was diagnosed with scleroderma. I also got some vitiligo patches on my forehead that never went away. My ANA was 640 and diffuse. One of these days I'll get it tested again. Even tho' my other symptoms went away with Minocin. My ANA was the same about a year or two ago. I am not symptom free. I also make stones in my kidneys and now have fluid in my hip joint which is very painful. But, I can't complain. I've seen others that are worse and I feel for them. Hope this helps others who did not know what CREST meant. The best to all of you~~~~Dolores & Mike From: marlaprendergast <kws11@...> Subject: rheumatic Re: Hard to diagnose? rheumatic Date: Wednesday, June 17, 2009, 8:09 PM Yes, but if you have a positive ANA, the pattern that you have may give you a clue as to what the disease is. I have centromere so it looks like I have/may have CREST. > > Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 As far as those little red dots on your face...I checked with a dermatologist, they can be removed through cosmetic surgery. But most insurances will not cover it because it is comestic. I have not read or heard of any way to get rid of them through supplements. One of mine looks so cloe to the surface like I could " pick " it off...no such luck. Some day I'd like to have the red dots taken off..... Roni rheumatic Re: Hard to diagnose? > rheumatic@grou> ps.com > Date: Wednesday, June 17, 2009, 8:09 PM > Yes, but if you have a positive ANA, the pattern that you have may give you a clue as to what the disease is. I have centromere so it looks like I have/may have CREST. > > > > Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Thank you Roni. As soon as I can afford it, I may consult a dermatologist to have them removed. My husband also has them all over his back. He has anticardiolip antibodies and positive for the Lupus anticoagulant. He does get the butterfly rash across his nose when he goes out into the sun too much. But so far, he has not come down with full blown Lupus. Yes, he gets aches and pains in his muscle joints. He had the TMJ and Raynauds when first diagnosed just like I did. But those symptoms disappeared early on with A/P. Once in a while, I notice the jaw pain come back. It doesn't last long enough to cause problems in eating. I just wait for it to pass or sip some liquid. Thank you for the tip. Dolores & Mike > From: marlaprendergast net> > Subject: rheumatic Re: Hard to diagnose? > rheumatic@grou > ps.com > Date: Wednesday, June 17, 2009, 8:09 PM > Yes, but if you have a positive ANA, the pattern that you have may give you a clue as to what the disease is. I have centromere so it looks like I have/may have CREST. > > > > Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2009 Report Share Posted June 18, 2009 Sheila; is right on here.My celiac did not give my any tummy problems but definately made the SD much worse or might even have caused it.I had the same tiny " paper cuts " on my skin and that is one form of dematitis herpetiformis caused by celiac > > > Sheila, > > I didn't see your symptoms but my son is gluten intolerant (very > similar to celiac disease which is an auto-immune disease). He > struggled for over 6 years before getting diagnosed. The symptoms are > varied and some people can have a symptom or none of the classic > gastro-intestinal symptoms, and be still reacting to gluten. This is > not an allergy. It is an auto-immune disease. In celiac disease, the > small intestine is damaged. But with some people, they can be > sensitive to gluten but not have damage to the small intestine but > have damage to various organs in the body. Research is beginning to > show that auto-immune diseases can improve with a gluten-free diet > (which is what yo hae to do when you have celiac or gluten > sensitivity). The other auto-immune conditions that are linked to > celiac disease or gluten sensitivity are: auto-immune Dermatitis > Herpetiformis, insulin-dependent Type 1 Diabetes Mellitus, Thyroid > Disease - Hashimoto's Thyroiditis, Systemic Lupus Erythematosus, > Autoimmune liver diseases. Less Commonly Linked to celiac disease: > 's disease, chronic active hepatitis, down syndrome, rheumatoid > arthritis, syndrome, syndrome, Sjogren's syndrome, > fibromyalgia, alopecia areata, and scleroderma. > > Symptoms of celiac disease or gluten intolerance can include diarrhea, > constipation, bloating, migraine headaches,nausea, weight loss, > anemia, chronic fatigue, weakness, joint pain, bone pain, muscle > cramps, neurological complaints, depression, weight loss, > concentration and memory problems. > > Just thought I'd pass this info along just in case it may apply to you. > > Kathy > > > > > > Hi everyone; I was wondering if anyone ever had a hard time getting > a diagnosis? I've been sick for 25 yrs. with what seems to be some > sort of auto-immune disease with no diagnosis.Is it possible to have > an un-diagnosed illness that has yet to be diagnosed? Did anyone ever > experience this? Thanks,Sheila > > > > Quote Link to comment Share on other sites More sharing options...
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