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Still No Answers

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#1 Rachelle


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Posted 24 July 2007 - 02:30 PM

I had another dermatologist visit. My "ulcer" is closed now and is healing, but slowly, so he just wants to wait again before doing a biopsy. The time before last he had it cultured, which showed nothing, but I had been on Bactrim. He continued the Bactrim and is assuming it is a resistant bacteria. He does not want to do the biopsy unless completely necessary because he feels it will not heal well and may cause more problems. I asked if he could do bloodwork and he said "there is always blood work that can be done" and asked me why I feel it is autoimmune. He feels there arent enough symptoms to warrant an investigation I guess. My hand is itchy and my hand knuckles are red and the skin feels sore. My middle knuckle finger looks purple under ultraviolet light and so does the area around the ulcer on my first finger knuckle which is scarred. My index finger with the ulcer feels better, but it is curled a little and I can't straighten it completely out. It is mostly my left hand, but my right hand gets itchy too and knuckles are kind of red which is fairly normal for my skin, but the left hand looks worse. The only other symptoms I can think of which I havent mentioned is muscle twitching on and off, especially legs. I had strep in March and a bad virus a week after getting well and didn't eat much for almost a month and lost weight. I assumed that was the reason for the twitching and my right leg also cramped and still does sometimes. It is like I can feel my butt bone more prominently on the right when I sit. I dont know what is going on. Any advice? and thanks to anyone who read all this rambling!! LOL

#2 Shelley Ensz

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Posted 25 July 2007 - 07:50 AM

Hi Rachelle,

The presence of tight skin alone is grounds for a clinical diagnosis of scleroderma. It does not require any symptoms other than that. If the skin on your index finger that has an ulcer is so tight that the finger is curling and cannot be straightened, it would seem to me that there is something going on and that it should not be ignored.

I think you should ask your primary care doctor for a referral to a rheumatologist -- preferably one with experience in scleroderma. Try calling your nearest Scleroderma Center, tell them you have a digital ulcer and a curling finger, but that your dermatologist does not recommend any testing, and ask them for advice.

As I understand it (and please keep in mind I have no medical training at all), twitching isn't a scleroderma symptom; usually it is caused by simple things like low magnesium, which can be brought on by a poor diet and stress.

Also, your doctor should be referring you to occupational therapy to maintain as much use of your curling finger as possible. It is easier to prevent contractions than to do anything about them once they have settled in. Meanwhile, as a stopgap measure, unless your doctor recommends against it, keep using all of your fingers and keep trying to first warm and then (very gently but firmly) stretch them a few times a day; coddling them is a very natural tendency when they feel tight and hurt, but it is usually the worst thing you can do at this point.

Scleroderma typically onsets very slowly and without a whole rash of symptoms at once. So just because there are only a few symptoms, doesn't mean they should be so casually dismissed.

At a minimum, I think you should see a local rheumatologist. That can be a bit of a gamble though since most rheumatologists don't recognize scleroderma when they see it. But still, it would be a step in the right direction, and with any luck you might have some antibodies. The danger is that local rheumies often rely too heavily on antibodies for diagnosis, and fairly often there are none in the initial stages of scleroderma (and sometimes even in the latter stages.) That's why a scleroderma center would be a better bet, as they more readily recognize the symptoms (and understand the early stages) of scleroderma.

Please keep in touch and let us know how things go for you.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 WestCoast1


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Posted 25 July 2007 - 08:03 AM

Hi Rachelle,
I am so sorry to hear about your recent symptoms...and an uncooperative doctor it sounds like! I think that the tight skin...possible swelling of hands and the discomfort of the tailbone all sound a little suspicious. I don't see what it would hurt to get a few antibodies checked out in a blood draw. It is your health at stake so maybe you could demand that they at least check to ease your mind. If you are wrong about it being autoimmune, well nothing lost there.

You could also get a second oppinion if your ins. allowes you too.


#4 bookworm


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Posted 25 July 2007 - 05:35 PM


I agree with Shelley! If possible, you should find a scleroderma center or a rheumatologist who specializes in it, even if you have to travel a little to get there.

I'm not a doctor either, but I can tell you that one of my doctors -- a plastic surgeon -- would absolutely faint at the thought of a biopsy! He'd tell me it might never heal, and I know he's right! He's the doctor who saved my finger when a digital ulcer was just destroying it. Two or three of the other doctors I'd seen wanted to amputate the end of the finger.

Now, I always remind myself that doctors don't know everything and that they don't even agree with each other! So, I won't be letting anyone cut on me or take little chunks or anything like that until I check with severl doctors and see if they all agree it's necessary.

And then I'll think about it myself and decide whether I think it's necessary!

Mary in Texas

#5 kramer57


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Posted 26 July 2007 - 01:18 AM

Hi Rachelle, I agree with Shelley and Mary that seeing a Rheumatologist or Sclero. specialist would be a great idea for you. Blood tests can be helpful, but they are not the only way to diagnose Scleroderma, it can be diagnosed by symptoms & history too. I had 20 blood tests that were all normal, but my Rheumatologist listened to my symptoms, took one look at my shiny smooth fingers, and said "You have Scleroderma." I was lucky to get one that was familiar with Sclero!

#6 Rachelle


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Posted 28 July 2007 - 05:06 PM

Thank you all for the great advice. I have seen a few doctors and sometimes I feel like giving up. I feel they just dismiss me because I am young, slim and look healthy.

#7 peanut


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Posted 28 July 2007 - 06:26 PM

Hey Rachelle,
Let me encourage you to never give up. It is essential to find doctors you trust and feel comfortable with. I'm fairly young, 28 and look healthy but I just started oxygen for my lung and PH complications. When the oxygen driver pulled up he said you don't look like the kind of person who needs oxygen. Well things aren't always as they appear.

Answers are out there my dear,

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...