My mother was diagnosed with gammopathy several years ago. She was just diagnosed last week with cancer of the bladder, and the pain management doctor said she has monoclonalparaproteinemia, which is gammopathy. I've been telling her since she has the big red flag of GAVE (watermelon stomach) she should have the ANA/Anticentromere B bloodwork run, since my daughter has Lupus, granddaughter has lupus, I only have two features of Crest, but have so many symptoms indicative to it. All three generations of us have horrible necks and backs, and we all have the scans to prove it. My daughter and I have herniations and tears in the same exact place, my tear is small, while my daughter's is moderate. Too much of a coincidence. My mother had her thyroid irradiated several years ago, but with all of her problems, I don't think any of her doctors ran the autoimmune blood work.

You guys sound just like me and I have a firm diagnosis of limited scleroderma by a noted scleroderma specialist, even though I don't yet have significant skin hardening. Just a little finger swelling, and some shininess between the nails and the first knuckle, and mildly dilated capillary loops showing in my nailfolds. I have other signs of scleroderma also though. And I forgot to mention that on top of the spine inflammation and spontaneous fusion of vertebrae, like you I also have 5 disc herniations, seemingly for no reason - I've never been athletic.

You and your mom should ask not just for the ANA test but also for the anticentromere B test (LabCorp does it, but some labs don't have it). The reason I say both is that there is a new ANA test that can't pick up the presence of the anticentromere B antibodies. See Dr. Steen's comments about this at http://consults.blogs.nytimes.com/2010/07/30/expert-answers-about-scleroderma/ . Scroll down to her answer below "Testing for Scleroderma?" I can personally vouch for the fact that this is so: a test for anticentromere B was hugely positive at LabCorp on the very same day that my most recent ANA test at U. of Maryland Hospital was totally false-negative. Prior to that I had had about 15 ANA tests at Quest and LabCorp, all of them highly positive.

You should also ask for a microscopic examination of the nailfold capillaries. It's so easy for a doc to do with a drop of oil and an ophthalmoscope or otoscope, but unfortunately most regular rheumatologists don't do it. I went to 3 rheumatologists who didn't, before I finally went to a scleroderma specialist, who did! As a result, it took me from 1985 to this year to finally be diagnosed. If I hadn't referred myself to the scleroderma specialist, I'd still be undiagnosed. I do recommend Dr. Steen at Georgetown U. Hospital in D. C.. She's terrific, and recently was named "Doctor of the Year" by the (national) Scleroderma Foundation. Now that I've said that, I guess I'll have a longer wait for appointments with her. Ha!

I do agree, it's too much coincidence. There's definitely a genetic component going on here in both your family and mine. And my Dad's mother had the "purse-string mouth" so often shown in pictures of CREST or limited scleroderma - all those radial fissures all around the mouth!

Thank you so much for the information. My mom is going to see the oncologist on Wednesday. I live in Florida, and she lives in Cleveland. So it looks like I will be having to go for a visit in the very near future. Luckily my brother and sister-in-law are there to take her to the doctors. I am pretty sick myself right now, having a sinus infection that is making me weak. I did tell my mom I just came across something that said if you have scleroderma and cancer to not do the radiation treatments.

I did have the anticentromere B and it was positive - 4+. I just had an ultrasound of my kidney on Monday. I was having frequent UTI's and pain, lower, and also in my back, and upper right side. It indicates a 7.4 mm mid pole inferior cyst. What is your take on this?

Sitback,

I'm sorry to hear that you have the anticentromere B antibodies like myself, but from what you described before, I'm not surprised. They usually go along with the limited form of scleroderma, which usually does not affect the kidneys. So probably the kidney cyst is unrelated. I'd accept whatever the urologist has to say about it. But make sure he knows you have the anticentromere antibodies.

If your Mom has both cancer and scleroderma, you should know that chemo is sometimes used to combat scleroderma. Whether it would also be of benefit in her type of cancer, though, would be up to the oncologist.

Unfortunately immunosuppressants such as prednisone, used long-term for autoimmune disease can sometimes lead to cancer. Since I have MGUS, that's why I've been avoiding steroids so far. Studies showed that what keeps the MGUS from progressing to mount an immune response is whether the body can mount an effective immune response to the MGUS cells. So far, so good. So I will delay immunosuppressives, unless either the MGUS converts to multiple myeloma, or the scleroderma becomes life threatenting. Apparently my docs agree. It's difficult biting the bullet for pain, though. :/

egads, so many of my symptoms could be related to arteriosclerosis. If so, it is directly on me to change my eating habits and try to get some exercise. I don't want to end up with a stroke. Clinton lost a lot of weight on his vegetable based diet, but he still doesn't look good, but I guess that is understandable considering his recent operations.

Scleroderma causes a thickening of the blood vessel walls similar to arteriosclerosis, but different in process.

I wish you were my doctor! You are so knowledgeable.

Ha! My days of practicing optometry ended in 2000, when I became to ill to work. Back before 1980, when I was in optometry school and learned about scleroderma, never did I dream it would one day affect ME!

Anyway, I'm glad to share what I've found out about the illness. Having a medical vocabulary helps me to read and understand medical studies, and I am glad to put it to use to help people here.

Oops typo: should be, "too ill to work"

on top of the illness, we probably all carry a lot of guilt because we can't do what everyone expects of us. Even I feel like a slacker and I know I have never been lazy a day in my life.

I'm with you on that one sitback. I'm unable to do so many things now. The mind says go the body says no.

I was just diagnosed in Jan. of this year with scleroderma. Had been ill, thinking I was passing gall stones. Wound up in ER in june of 2009 and diagnosed with acute pancreatitis, 2 cysts each on the liver and on both kidneys and ulcerative colitis. Docs seemed to insinuate that I was a drinker. Had gall bladder removed and counted on feeling better. Hah...
Went downhill, losing weight, unable to swallow or digest foods, severe headaches, digestive problems, fingers and toes started to turn purple. Lots of plegm and lots of coughing, voice became hoarse, pain in hands all the way up to the shoulder. EGD indicated trouble with the esophagus. Doc dialated it during EGD, it helped for less than a monthe with the swallowing.
Several ANA work-ups indicated Lupus, but Rheumatologists nixed that and came up with scleroderma. They did perform the nailfold capilaries test plus a ton of bloodwork and x-rays.
Was very fortunate to have received the diagnosis so quickly:
Systemic Scleroderma, Raynauds, Trigeminal Neuralgia and Sjogrens, which is bothering my left eye. Movement of neck is diminishing. Ankles, knees and hips are stiffening, probably due to the arthritis and scleroderma.
I am not yet as informed as Gardener on this disease, but am doing a lot of reading on the subject and I would appreciate any and all input from your group.
THANKS in advance,
antjeogram

Antjeogram,

If you or anyone else here has questions, I'll try to research the answer. There are more studies dealing with scleroderma all the time, and knowledge about this disease is expanding at such a fast rate now, that I'm very hopeful that we'll soon have better therapies, if not a cure.

And the more we talk about it, the more we'll give researchers ideas for more research! That's the way I look at it! :)

antjeogram I must sound like a broken record but I want to mention that many that have the disease I have (man-made) are being diagnosed with Systemic Scleroderma. I have Nephrogenic Systemic Fibrosis or more specifically gadolinium induced fibrosis. Gadolinium is a toxic-heavy-metal and is used in MRIs. You do not need to be renally impaired to get it and it might just be one injection. It may or may not be what you have but if you have had MRIs it's something you should consider especially where yours came on all of a sudden or at least it appears that way.