CREST is the old term. Your doctor is behind the times. The new classification for this is limited systemic sclerosis. It travels more slowly and is usually less severe than the diffuse form.

At this point some scleroderma specialist might diagnose you with limited systemic sclerosis, and some might call it "undifferentiated connective tissue disease with features of scleroderma" until you develop more signs. It depends on the doctor. Even then, they may feel it's too early to treat it.

1.I would suggest making an appointment with an actual scleroderma specialist. You can find the one nearest you, by Googling either EUSTAR or Scleroderma Clinical Trials Consortium.

Then do these things:

2. If you smoke, quit. Smoking will hasten the lung deterioration of scleroderma. Nicotine and caffeine both also vasoconstrict the blood vessels, aggravating Raynauds.
3. Avoid caffeinated beverages and chocolate for the same reason
4. If you have constipation start taking a stool softener. Severe constipation, left untreated can lead to diverticulitis, and intestinal perforations.
5. Have your doc check your serum Vit D level - it's often subnormal in scleroderma. Take supplemental D to get and maintain your blood levels of D in the normal range.
6. Have a Dexa scan at least every other year - osteoporosis is more common in scleroderma.
7. If your Dexa scan shows osteopenia or osteoporosis, start taking a calcium-magnesium supplement. Calcium citrate is less constipating than calcium carbonate. Make sure the doc keeps a watch on your serum calcium levels
8. If you are having any neuropathic pain, talk to a neurologist about alpha lipoic acid.
9. Keep your hands and feet warm. Wear mittens to bed if you have too. I do in wintertime! I use silk gloveliners when typing also, if my fingers are chilly.
10. Scleroderma can sometimes narrow the esophagus enough to cause obstructive sleep apnea. If you are having trouble sleeping, get a sleep study. Untreated sleep apnea can hasten the development of pulmonary hypertension, which is already a common problem in limited scleroderma. If you have apneas, be religious about using your CPAP machine.
11. If you are huffing of puffing, or coughing, make sure the doc does an echocardiogram and pulmonary function test. These are routine tests that all scleroderma docs do.
12. If you have gastric reflux, make sure you eat your last meal of the day well before bedtime, and ask your doc about proton pump inhibitors, such as Nexium.
13 Ask your doc about Curcumin.

I had the same diagnosis with the same cold response from doctor. I just wrote a long post on inspire.com in which I explained these large facilities with too many doctors and too many overbooked patients. We don't get enough individual compassionate care from these "professionals". They are plain heartless. I am sorry for your diagnosis and I am sorry that we all have to go through this but with the kindness and support that we receive from some of these sites, as this one, inspire, the road back foundation, makes it a little easier to get by and to understand. I have learned all about this disease and the other autoimmune that I have through these wonderful sites, not the doctors. They are unorganized and don't know a thing about you until you go for the first visit. Even then, they have to look over all of your medical reports as they never looked at them prior to your arrival. The Reply for Gardener is right on but having a positive attitude is important as well. Stay happy and try to stay active. This illness has made me busier than ever but I like that. I can't work anymore due to my illness, but friends here, paperwork, disability ect. keeps my brain active. I walk evey day with the dog and have changed my whole life. I don't have my old friends anymore, just my sick ones...LOL. I cry a lot, but it lessens every day as I see every day as another day here on this earth. Much love and support to you.
Let me know if you ever want to talk, my email is : kerry23@optonline.net

I agree, Kerry, there are too many doctors out there who when faced with a scleroderma patient act downright heartless. The way I can explain it to myself is that when they see a disease that they currently know has no cure, they feel the need to isolate themselves from the emotional impact. Otherwise they could not continue to practice. I don't know how oncologists, cardiologists, geriatrists and scleroderma specialists, in particular, survive it and continue to practice year after year. It must be very difficult for them to see one patient after another die.

You only have to watch this video with Dr. Wigley to realize what an emotional impact it must have on them. I'm referring to the part at the very end of this video: http://www.youtube.com/watch?v=Qrx5WjQwcj4 . Now, I grant you, this video was made in 2005, and we have some better drugs now, but still no cures. A recent study said that about 50% of people with scleroderma still die OF it, and still more die of conditions exacerbated by the scleroderma.

We need a cure, and if not that, better drugs to control it.

Hi Redhead!
I was dx'd with CREST earlier this year by a naturopath. She was the only who really listened to my health complaints seriously and did the blood tests. She was really great and encouraged me to see a dermatologist and a reumy. At least I have some answers now. Please take care of yourself and I think that the advise by Gardener21 is perfect. Make sure you watch your diet. I have recurring diveritulitis and it is NOT fun. I hope you find some caring doctors near you but remember that you will have to be your own advocate, too!
Take care!
:o)

I would say with the study I posted and the concern that scleroderma is related to exposure to metals it would be prudent to find a way to gentling chelate the metals from your body. Even if scleroderma is not related to metal poisoning or chronic or acute exposure to metal it is prudent to try to minimize metal in your body.

Good luck. I do very gentle stuff and I do feel a bit better. I have a lot of metal in me though.

Thank you all for your reponses. Gardener21 thank you for the detailed information. I am doing some of these things but will incorporate the rest of them. I will find a scleroderma specialist as you recommended. I live in the DC/Baltimore/Annapolis area so there's bound to be one around here.

So what do we think of the placquenil? Are any of you taking this? If not what meds are you all taking and for what?

Thanks again all and God bless you. This is the best, on-the-mark information I have gotten to date. See the rheumy next week and will see what he says. Will give him a chance to redeem himself. He did say 'MCTD/connective tissue disease'. Guess he didn't want to utter the dreaded 'S' word without more bloodwork. I'll let you know what I find out if you all are interested.

John Hopkins Hospital has a Scleroderma unit and specialitst. Try that.
They said MCTD to me too, I don't know if that was an overlap or was it another term for SD. I am currently NOT on any treatment and was diagnosed in June 2010, still searching for doctor that will treat me with antibiotic protocol as used with some patients on Road back foundation.
Lots of great info there: Check it out I have limited too, but it is in my esophagus and have to go for endoscopy along with cat scan of lungs.
Scared to hear those results. Again, fighting with these doctors....one said to me, "you shouldn't be in so much pain" (this statement came from a SD specialist. Well, if he had looked in my chart he would have seen I have Fibromyalgia on top of all of this. I am done with him too.
Going to Dr. B. from Rhinebeck NY on Oct. 11, have heard he is excellent. Good luck and keep searching for a good specialist!

Thanks Kerry23. I hope you find a good doc. I'll check the site you recommended. I get the feeling I'll be doing alot of research and trying things until I find out what works for me. At least now I have more information so I can ask the rheumy more questions next week. Thanks again and God bless!

Inspire.com is another helpful "support" forum, there are more people in there, you will find lots of info through there as well. Take vitamins, try to get out and excersize .....Many hugs
Kerry

I will, Kerry. Thanks. My rheumy told me to stay out of the sun but I haven't noticed that it has been bringing on any negative effects so as soon as this bad weather blows out of the mid-Atlantic I plan to garden and work in the yard all weekend. Take care.

They told me the same thing too, stay out of sun, but it doesn't affect me either. I don't think I have Lupus even though the level is high, just fibro and scleroderma. Usually it is the Lupus patients that are told to stay out of the sun. Do you have Lupus?

No, not that I've been told. The scary thing to me in reading these posts and the posts on the MCTD site is the number of people that have one diagnosis and somewhere down the line are told they have something else entirely or something in addition to the original diagnosis. What's up with that? Sometimes I think the rheumies pick a disease out of the hat just before calling us in from the waiting area. Sort of like the autoimmune disease raffle.

Well, what I have seen that happens is when you are diagnosed with one, let's say, scleroderma, then it seems we are more suseptiable (spelling) of getting another one. Like, I have Scleroderma, then Fibromyalgia, along with a couple of others, yet they are all similiar in symptoms, I think I have most of them. Chronic Fatigue symptom, for example, is a autoimmune disorder, fatigue is a symtom of almost all of the autoimmune so I figure, you might as well add that one to the list as well. I believe I have Sjogrens syndrome, but I have had the eye doc and a specialist in Sclero who agreed but no one remembered to document. Actually, the eye doc, "passed the buck" on to specialist who forgot to document it. It is a mess.
Again, they are all similiar in symptoms. Go get the book Living well with Autoimmune diseases: Mary J. Shomon: Very informative on all of them and you will see what I am talking about. I am now reading her other book "Living Well with Chronoic Fatigue Syndrome and Fibromyalgia" which Fibro goes with all of them. I got that too. Are you in pain? I am 24/7, stress makes it worse, I am so tired all day.
Kerry

Thank you Gardener for your post I found the information there very helpful.I have Sjs and some other connective tissue diease that the rheumy never confirms which one I have seen on my notes Crest and I have all 5 symtoms I saw Sle I now gather that they are the same thing and Mctd . For me in the last 4 years the worst has been the reduced lung function and brochiectasis and now my joints have got much worse for pain and swelling in both ankles hands rib pain and back .Crikey if it didn't hurst so much I would laugh at the list of symtoms . I wondered if anyone was on the plaquenil with aazathioprine .My last visit I needed a steroid injectionwhich helped and now the doc wants me on this combination .Love this site gor help and advice and the people on here are really inspirational love to all

You guys should really consider what you have been exposed to. I did and I'm glad I did because now I can focus on one thing - getting gadolinium out of my system.

All the toxins we are exposed to add up to make us very sick.