Posted 03 January 2007 - 01:08 PM
I just went to Johns Hopkins last week and was told that I have CREST, Sjogren's, and Fibromyalgia. I was wondering who else on this site might have CREST. I know that when I first joined there was a question about how long people have been living with scleroderma. It's been moved and I can't find it.
I am still waiting to hear back from bloodwork and urine samples. I have my gastric emptying study next week.
Posted 03 January 2007 - 01:59 PM
You probably already know this, but just in case.....CREST is a form of scleroderma and is an acronym for a constellation of 5 symptoms (from my reading, however, you only need to have 2 out of the 5 to receive the diagnosis): Calcinosis, Raynaud's, Esophageal Dysmotility, Sclerodactly, and Telengiactasia. I have 3 of the symptoms (REand T) but my rheumatologist said he doesn't like to use that particular designation (CREST) and has diagnosed me with undifferentiated connective tissue disease instead.
Here is the link to the thread on how long people have been diagnosed.
I hope this is all helpful.
Posted 03 January 2007 - 06:19 PM
Does your doctor at JHU call your affliction "Crest" or do they refer to it as systemic sclerosis/scleroderma? Just curious.
My understanding from many articles was that "Crest" is just a different way of saying "limited Scleroderma."
I'm just curious how your doctors are diagnosing you? In any event it's a bummer. I hope you find some answers and better treatments at JHU.
Michael in Florida
Posted 03 January 2007 - 06:38 PM
I have CREST and was diagnosed a long time ago. I can't think right now, but I think it must have been about 20 or so years ago. I did very well for many years without doing much of anything differently from anyone else. I also wasn't taking any medicines. My main problem was with the Raynauds and I did have to work at keeping my hands warm.
About three years ago, I got a bad finger ulcer, which took almost a year to heal, got gangrene in it, and really was a challenge to my doctors and was a painful experience for me.
Now, I am taking several different medicines, but am doing well. I was starting to get another finger ulcer just about the time the other one was almost healed, and, at that time my doctor put me on Viagra. It healed the new ulcer right up and I haven't had one since. That was about two years ago. Since then, the doctor has changed my medicine from Viagra to Cialis, which is about the same thing, but has a longer-lasting effect.
Please feel free to contact me if you have any questions you think I might answer.
Mary in Texas
Posted 03 January 2007 - 06:58 PM
Since you asked Nan what her doctors were calling her disease, I'll tell you that my doctor does refer to mine as CREST. Also the doctor who diagnosed it, years ago, also called it CREST. At that time he told me it was "a mild form of scleroderma." I don't always feel that it's so "mild" but I have to admit I am getting along awfully well most of the time, especially when compared to some others here, who are having a very rough time.
Mary in Texas
Posted 03 January 2007 - 10:17 PM
I also have crest scleroderma. I have all 5 catagories of the crest acronym. my rheumatologist classifies me as having limited systemic sclerosis (the more correct and modern way to classify it) mainly based on symptoms and bloodwork. I had a very high ACA ( specific for limited sclero) so it was an easy diagnosis for her. I also have mild sjogrens, and mild RA. don't be too afraid of the future especially if you have normal kidney and pulmonary function. this disease can be a real pain in the backside but most of us plan on being around for a long time . focus on eating healthy, lowering stress, following your rheumatologists instructions as per medications, etc. I am healthier today than I was a year ago since I was scared enough to change a lot in my life to become healthier despite the sclero. I still have bad days, but since eating healthier, trying to slow down on stressful activities, exercising more, getting lots of support from friends (also friends on this site) and taking some good medications, I have more energy and less pain. I don't feel as "sick". I hope your tests show no damage to internal organs and GI tract. sounds like you have a competent rheumatologist and that's a huge advantage in managing this disease . try not to stress too much with worry ( it only makes you more fatigued ) and get plenty of rest. a positive outlook can help you overcome more than you realize now. we have all been at the point where you are now. it's really tough. if you need to vent or have questions, we are here for you.
Posted 04 January 2007 - 02:23 AM
Posted 04 January 2007 - 02:27 AM
Sorry about your recent diagnosis but at least you know exactly what you are dealing with now!
Please let us know how your tests turn out next week.
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Posted 04 January 2007 - 03:39 AM
Posted 04 January 2007 - 03:43 AM
Thanks for your note. She calls it CREST. On all of the orders for tests she wrote scleroderma as my diagnosis.
Posted 04 January 2007 - 03:49 AM
Thanks so much for all of the replies. I posted last night that my ANA titer was 1:640. My doctor at JHU said that was quite high. She called me at 8:30 last night. I am fortunate that I got disability 2 years ago so that I am able to rest as needed. I also go pool walk for 30 minutes a day. Right now I really hurt and itch and feel super tired! I tell my husband it could be much worse and that I am very lucky that my watermelon stomach has stabilized. He just looks at me and smiles. He says with your positive attitude I know you'll be ok. I have got an awesome 14 year old son and a super husband. I am very fortunate!!!
Posted 04 January 2007 - 04:12 AM
Who do you see at Johns Hopkins? Just curious.
Posted 04 January 2007 - 04:56 AM
What good news that your watermelon stomach has finally stabilized! You certainly have been dealing with that way too long. Congratulations!
Posted 04 January 2007 - 06:48 AM
I have CREST - have for 7 years. I have the RET with the beginnings of C. Joint pain and fatigue are my biggest factors. Getting sleep is a challenge as I hurt so much and have to shift from hip to hip pretty much hourly if not sooner.
You mentioned you already obtained disability. Would you mind me asking on what grounds did they base that? I'm in the process of collecting data and will hope to file within the next year.
I often wonder if I have Fibro. And I have early Sjogrens. I just started to using drops day and night.
Posted 04 January 2007 - 08:35 AM
I had a major GI bleed due to watermelon stomach in 2004. At that point I had been told that I had Fibromyalgia, Sjogren's , arthritis, GERD. At the same time I was having a horrible time with degenerative joint disease in my right thumb. I had surgery on my right hand in Jan. 2005. My hand didn't heal properly and now it is so atrophied that it looks half the size. When I applied for disability I had all of the above. I was denied the first time by the state and federal. I appealed it and the state had me examined by a state physician and I was found eligible. At that point my hand had started to really mess up. My primary care physician thinks that is the reason I got disability. I also have severe fatigue. I knew I couldn't do the job I had been doing. I was a teacher. I feel if my primary care physician would have use strong enough language it probably would have gone through without the appeal. She kept saying that I had had spells before and got better. Finally, she realized what I was saying. I said to her,"Who will want me as an employee if I can maybe make it to work one day and miss four?" With the mess that we have it is hour by hour knowing what I can do. Does that make sense? I hope that this has helped you some.
Good Luck !
Posted 05 January 2007 - 02:45 AM
My Dr. at Johns Hopkins is Fred Wigley. I'm also involved in a lung study with Dr. Laura Hummers. They're both awesome. Actually, I'm going up there for my check-up in a couple of weeks. "Going up there" implies taking 2 planes and going through immigration at Miami airport... quite a hassle. But I'm very satisfied with the care I'm receiving.
I hope you start feeling better soon. I know what that fatigue can feel like and it's not the best feeling in the world.
Posted 05 January 2007 - 03:44 AM
I asked to be seen at the Scleroderma Center, but they wouldn't see me. I went to the Rheumatology dept and saw Dr. Saleh. I really do like her. She did call her Scleroderma colleagues after examining me. I figured they didn't want to see me because I hadn't been diagnosed with scleroderma yet. Good Luck on your visit! That's quite a trip. I am only 3 hours away.
Posted 05 January 2007 - 03:45 AM
The rheumatologist I was seeing for 20 years said I was a MCTD with SLE and CREST. I have a high positive RNP-243 which is specific for MCTD. rheumatologist said my hands showed the characteristics of CREST about 10 years after my SLE diagnosis.
New rheumatologist one year ago who is 30 says my diagnosis is SLE with an overlap of limited sceroderma. I also have antiphosholipid syndrome. Also have positive ds-DNA which is specific for Lupus.
I have been a challenge to treat. I am on 9 meds presently and see rheumatologist and dermatologist often.
Posted 05 January 2007 - 04:48 AM
Dr. Wigley, for instance, is only seeing 6 patients a week, from Tuesday-Thursday. Maybe they don't have the capacity to take in many new patients with that set-up, I don't know. I do know that last time I was there, about 6 months ago, I had to wait almost 2 hours to see Dr. Wigley, and there were lots of patients waiting in the area after me.
I started going there 3 years ago, and they hadn't diagnosed me yet. I'm glad you're seeing a good Dr. you're happy with up there. It's a great hospital.