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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 enjoytheride

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Posted 10 September 2009 - 08:13 PM

Hello to all- I just discovered this forum and am grateful to be able to access your experiences.

I was diagnosed with CREST a few months ago- the doctor prescribed large doses of Vitamin D which helped me so much- so much less pain and am now able to be much more active.

But unfortunately my primary physician disagreed with the specialist about my having the condition. He does not think that I have this condition as he thinks I should be much sicker if I had it. But I think that the specialist is correct. So I looked for a new primary doctor but was rather surprized that my HMO was not accepted by any doctor here. When I finally found a new doctor whose staff person said was accepting my insurance. Then I tried to change my insurance to reflect him as primary but was told by the insurance company that he was not approved. They say it's pending but can take 6 months to be approved.

Opps- I had already told the old doctor's office I was changing aand they sent the records to the new doctor. So I effectively have no doctor at the moment- I should have been more careful :/

I think that I'll be okay until this is resolved but wondered about a problem I'm having. The inside of my nose membranes inside get really dry, then develops some painful areas, sometime the skin cracks open, and then it all goes away in a day or so. Is this a CREST related problem? I wonder because my nose gets really cold too. If so, anything to be done? Without a doctor at the moment.

#2 ladyhawke

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Posted 11 September 2009 - 01:33 AM

Welcome to the group. It's a great place with many wonderful people. I know that you will find any information that you are looking for.

I get dry mouth and nose. For now just to help, there is a nose spray out there for "dry nose", check at the pharmacy. I know with Raynaud's the hands and feet get really cold, mine turn bluish gray or pure white. Hope your doctor gets approved soon. Not good to be without one.
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#3 janey

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Posted 11 September 2009 - 04:55 AM

Welcome to the ISN forums! I'm so glad that you have joined us and posted.

I think you are doing the right thing in looking for another doctor. Any doctor that says you don't have scleroderma because you aren't sick enough, doesn't know enough about scleroderma to treat one that has it - in my opinion. Scleroderma affects everyone differently. CREST, a limited form of scleroderma, can move very slowly. On the ISN page about CREST it states that you only have to have 2 of the 5 symptoms in order to have the diagnosis. So if one of your doctors did diagnose you with it, then it's probably due to a couple of symptoms.

My nose gets cold also. I do have an all encompassing case of Raynaud's, so I attribute the blue tipped nose to that.

I'm so sorry about all the problems you are going through with health insurance and doctors. Hopefully, once things to get worked out you will have found a primary care physician that you trust and can work with. Please keep us informed and thanks joining!

Big Hugs,
Janey Willis
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#4 Sweet

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Posted 11 September 2009 - 05:38 PM

Welcome to the Forums,

I just love it when a doctor is so knowledgeable in his own deluded mind. NOT. Seriously I'm sorry you find yourself in this situation. Finding a new doctor sounds like the best thing to do.

Is the doctor that gave you the diagnosis a rheumatologist? Did he/she do blood work that supports the diagnosis that you can take with you to your next doctor?

Hang in there, sometimes the scleroderma/CREST ride is a bumpy and frustrating one.

We're here for you!
Warm and gentle hugs,

Pamela
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#5 Jeannie McClelland

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Posted 12 September 2009 - 01:47 PM

Hi Enjoy, welcome to the Forum!

Lots of us have dryness issues and many have a diagnosis of Sjogren's Syndrome (also known as Sicca Syndrome). Sicca is just a fancy word for dryness. :rolleyes: In addition to the spray Ladyhawke mentioned, there is also a saline gel on the market that can help. Keeping well hydrated does too. Since I live in a really dry climate (relative humidity can be down in the single digits - wow!) as soon as it is time to turn the furnace on, out comes the humidifiers.

Cold hands, fingers, nose, and other bits - ah, that could be Monsieur Raynaud come to live with you. (I'd have preferred Gerard Depardieu myself.) For info on that, have a look at our Raynaud's page. This is about the time all of us start swapping our favorite tips for keeping hands and feet warm. While I don't think you'd want to go through the day wearing a hand-knitted nose warmer, ski masks can be a decent solution in the winter. My handsome hubby says I often sleep with one hand curled around my nose. (Well, I guess it's better than sucking my thumb~ :P )

I hope you'll post often and let us get to know you. Good luck finding a new general practitioner, it sounds like the old one is a candidate for a Not Approved list... It's not uncommon to meet those know-it-all's, unfortunately.

Warm welcomes and a warm hug,
Jeannie McClelland
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#6 enjoytheride

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Posted 13 September 2009 - 08:47 AM

Thank you - I will be trying some of those products and will research other pages.

Unfortunately my general doctor had some good points -you could get into see him any time and he would call you back the same day - so I was reluctant to leave.

I had a lot of calcinosis on one finger that came on after a very minor cut. He sent me to a lot of other doctors thinking it was an infection. But no one could find any sign of infections. Eventually I was sent to a surgeon who took a large amount of it out. That surgeon thought I had CREST - I think my regular doctor sent me to the rheumatologist because he disagreed with the surgeon and wanted it ruled out. But oops- the rheumatologist did an exam and sent off for additional blood tests. She said It had it. My regular doctor disagreed.

I have had GERD for years. Also I had been throwing up violently for a number of years and the doctor kept sending me for an endoscopy, which showed irritation and nothing significant. Then the issue would be dropped without resolving it til the next time I got tired of it and complained.

But the rheumatologist saved my life I think- she ran blood tests for CREST and she found I was low on Vitamin D and prescribed a course of 50,000 IU for 8 then 10 weeks. It was amazing the difference in my life- my joints stopped hurting so very bad that I couldn't even put my knee on the bed without pain. I stopped being constantly so cold and falling asleep every time I sat down. I was so weak that I had to rest after walking 30 feet. And I stopped throwing up!!!! I keep having to take Vitamin D and calcium as I can't seem to store it but still what an improvement.

I still have hands that will get suddenly cold and some other oddities, mostly intestinal things, but life is definitely looking up.

Anyway thank you for your information- sometimes I feel that so many oddball things are going on with me, it must be in my head and it's good to have a place to check.

I just need a doctor that will work with my symptoms.

#7 Amanda Thorpe

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Posted 14 September 2009 - 07:27 AM

Hello Enjoytheride

I've just read your post and think you're going to be better off without a doctor who thinks you don't have scleroderma because you're too well, all that statement confirms is the lack of knowledge about scleroderma.

I hope you get the doctor change/insurance issue sorted soon and in the meantime keep posting.

Take care.
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#8 enjoytheride

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Posted 17 September 2009 - 04:54 PM

Still no doctor but I have come to the conclusion that I'm better off without a doctor than one who either doesn't hear me or dismisses what I have to say. Unfortunately I live in a county with too few doctors. So the choice isn't there. In fact the rheumatologist I was seeing is was only a visiting doctor who is not coming anymore.
I have been reading the posts of others and wonder if there is a clinic on the north coast of California who has people experienced in this condition? Anyplace where I could travel at least to get more information?

#9 enjoytheride

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Posted 18 September 2009 - 06:05 AM

Thank you- both Palo Alto and San Francisco are do-able. About 300 mile away. I will check that section out.