Scleroderma Support Group

This does sound like CREST. You need to be going to a scleroderma specialist. If you tell me what state or country you are in, I can give you the names of the nearest scleroderma specialists who are either in the EUSTAR or Scleroderma Clinical Trials Consortium.

Hi, thanks for your post. I feel it could be Crest also but I guess I don't fit the criteria yet or I'm sure my g.p would send me on to another rheumy. I've seen two already. The first one didn't know what was wrong with me and the second one said, maybe, fibro. I know that my G.P consults with an internal med guy when I have new positive test results. A while ago my b.p shot up and after I had high creatinine tests but since being put on meds that has been fine.
I am located in Ontario, Canada.
The funny thing is some days my hands move and feel almost normal and then other days they are so tight and swollen I can't fully open them or make a fist.Could it be the raynauds doing this? I just know that I feel terrible, the fatigue is the worst for me.
I asked my Dr. if I maybe had U.C.T.D and was told No, you have a grumbling disease. ????? So I've stopped grumbling. :)
Thanks again.

Questions:
1. Do you have hardening of the skin on your hands? Regular arthritis has a tendency to distort the fingers laterally, whereas scleroderma bends the fingers toward the palms. Are you describing the latter? Skin hardening with bending contractures of the fingers toward the palms would constitute sclerodactyly.

2. With the nucleolar pattern, you doctor should have followed up with an SCL-70 test, and probably even an anticentromere B test. Did he?

3. It sounds like you have at least two, and maybe three of the features of CREST (Raynaud's and Gerd). Do you also have any telangiectasias on face and fingers? Lumps of calcium under the skin?

4. Has anyone put drops on oil on your nail margins and performed a microscopic examination of the nailfold capillaries to see if there are large loops?

If you have 3 of the features of CREST (Raynaud's, Gerds, and sclerydactyly, then you probably do have it. It's sad but true that most G. P's and even most regular rheumatologists are completely clueless when it comes to scleroderma and its variants. That's where a scleroderma specialist is needed.

Swelling of the hands can indicate Lupus, or it can be the beginning phases of scleroderma. Or it can indicate a kidney problem. High serum creatinine and high blood pressure point to a kidney problem. But both lupus and scleroderma can CAUSE kidney problems. And kidney problems in turn can cause high blood pressure! Then high blood pressure can turn around and damage the kidneys more. So it can become a vicious cycle.

I am astounded at your G.P.'s crass comments as to "grumbling disease." He is treating you as a hypochondriac, and I don't think you are one. In my opinion it's time to fire that doc and get a new one! At the very least the new doc should have you in the ongoing care of a rheumatologist to monitor your kidneys. Have the new doc refer you to a rheumatologist willing to do that, or even refer you to one of these scleroderma centers (members of the Scleroderma Clinical Trials Consortium). It might be worth it just for your peace of mind if nothing more.

Nova Scotia:

Institution: QEII Health Science Centre, Rheumatology Division, Dalhousie University
1341 Summer Street, Suite 245 NSRC
Halifax, Nova Scotia, B3H 4K4

Coordinating Investigator: Sutton, Evelyn, MD, FRCPC

Telephone Number: 902 473 7040

Fax Number: 902 473 7019


Ontario:

Institution: St. Joseph's Health Centre
Rheumatology Department
268 Grosvenor Street
London ON, N6A 4L6

Coordinating Investigator: Pope, Janet, MD MPH FRCPC
Assistant Professor of Medicine

Other Local Participants: Bellamy, Nicholas, Dr.

Telephone Number: (519) 646-6332
Fax Number: (519) 646-6334



Institution: Mt. Sinai Hospital
600 University Ave.
Suite 1004
Toronto, Ontario, Canada, M5G 1X5

Coordinating Investigator: Lee, Peter, Dr.
Associate Professor of Medicine

Other Local Participants: Keystone, Edward C., Dr.
Johnson, Sindhu MD, FRCPC

Telephone Number: (416) 586-8247
Fax Number: (416) 586-8766
Quebec:

Institution: University of Montreal School of Medicine
Centre Hospitalier de l'Universite de Montreal
1560 East Sherbrooke Street
Montreal, Quebec Canada
H2L 4M1

Coordinating Investigator: Jean-Luc Senecal MD, FRCPC, FACP

Telephone Number: (514) 890-8000, ext. 27131
Fax number: (514) 412-7672

Institution: McGill University
Jewish General Hospital
3755 Cote St. Catherine Rd
Suite A216
Montreal H3T iE2
Canada

Coordinating Investigator: Murray Baron, MD

Telephone 514-340-8231
Fax 514-340-7906

Thank you Gardener21. I really appreciate your response. Sorry for the novel.
To answer your questions.
1. The palms of my hands are tight and this is what is drawing my fingers in.My Dr. says I should work my hands daily. The tops are still quite moveable. My fingers are very tight to the first joint and a little tight to the second joint. My Dr. wiggles the skin between his fingers to feel this. Does this sound scleroderma?
I thought for awhile that I was maybe developing Duputryen's as my father had that but my Dr. said he didn't think it was that as my whole palm is tight and hard. I can't spread my fingers far. I don't have any wrinkles on my face and my mouth opening is about 32 mm. The dentist has his assistant stretch my mouth with her finger so he can see better. grrrr.
My toes are hard and tight also. But then again it's worse and better like my hands. Really weird. Don't know if that is consistant with sclero.

2.Years ago I had further blood tests and they were negative, I think. Now he just checks the ANA but seems to be waiting for it to go higher.(which it never does). He has told me that he keeps a graph of things like WBC which is always low.

3.I have one telangectasia on my cheek but many broken blood vessels on my face. I also have red dots on the tops of my feet that blanch but my Dr. says these are probably from the raynauds.
I have had red dots on my hands but they only stay for a few days and then dissappear so I don't think they are telangectasia.

4.The only person that has looked at my nailfolds is me. lol
My mother has macular degeneration and has some high power magnifiers. I couldn't really tell if the blood vessels were distorted but I do have quite a few purple blobs. Don't know the name for them.

My hands are knoby as I do have a familial osteoarthritis in the last joints. I also have had constant swelling in the large joints on the back of my hand. I had one joint that got huge and sore but then I bumped it and it went down. Not sure what that was. My latest symptom is lack of stamina. I don't go to the Dr. any more, just for a yearly medical. I take meds for Gerd, high B.P,Nsaid's (infrequently as it makes gerd worse) and something for night time pain.
I can't really shop around for a new Dr. as I'm in an under serviced area.
It's frustrating feeling this way and not really knowing what it is. I have read that some people never get a diagnosis. I never really get a straight answer. I've asked if it could be scleroderma and was told yes so I know it's on the Dr.s radar. I've been told I could have an overlap ( to what I don't know and I thought you had to have an initial disease to have an overlap). I've been told he has to check my liver as it can go along with "these diseases".
Can I really be imagining it if I get these responses from my Dr? I tell myself to stop thinking about it and get on with my life but it's hard when you feel this way.
Thanks again for your time.

If he thinks you may have scleroderma, he should have referred you to a scleroderma specialist! Please recheck the list of scleroderma specialists in Canada, and see if any are near you. The list contains doctors from Nova Scotia, Ontario, and Quebec.

As for "underserved" I think ALL countries are underserved as far as numbers of scleroderma specialists. Canada has more of them, though, than the entire mainland of Africa.

The point is, where there's a will, there's a way. Does your insurance require that a primary "gatekeeper" refer you to a specialist? If not, refer yourself. If so, and your GP won't refer you to one of the specialists on this list, fire him, and get another GP who will! Some people even come down from Canada to see scleroderma specialists here in the U.S.

You are your own best advocate. It's really important to get diagnosed because the sooner you get treatment to help prevent the gradual damages of scleroderma, the longer you will live with a decent quality of life. Damages of scleroderma tend to be permanent, so whatever we can do to slow them is important.

Hi, Thanks again. I will ask my Dr. when I'm there if I could be referred to one of the sclero specialists. When I said I was in a under serviced area I did not mean for specialists or rheumys but for G.P's. When you are already under the care of one it is very difficult to find another who will take you. Many here don't have a Dr. at all and have to go to the emerg or walk in clinics when they need to be seen.

That's a really tough situation. I hope you can get the referral. Let us know how it turns out.

You definately need to see a specialist. I go to one in Winnipeg. Its a long drive but do get reimbursed a couple months later for trip. I am astounded that you are not even on plaquinal. You have to see a SPECIALIST. Even if it is just another rhuemetologist. You may have other things from the way you speak. Possibly MCTD. Don't delay seeing a specialist. hugs and good luck marilyn