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2? Nerve Sugery And Pulmonary Fibrosis


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#1 dana

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Posted 04 July 2007 - 02:51 AM

Hi not sure if anyone remembers me or not its been awhile. I have linier scleroderma on my ribs and right arm. The arm is whats causing the most problems right now. I was put on methetrexate about 5 months ago which has been increased a couple times. Anyway I do have a dermatologist in Toronto now, that my dermatologist sent me to. Anyway my new dermatologist. sent me to a nerologist and he said the best thing for me right now is to have a nerve in my elbow moved to the other side of my elbow because its being compressed and causing some numbness in my hand, but he said he wants me to go for an mri, a muscle test and some kind of nerve test. And he said usually they don't do all this but he doesn't now much about this disease for one thing and he wants to talk to someone who knows more about scleroderma as well. Anyway sorry about this long info about it, but I just thought maybe someone here has gone through this as well and maybe could give me a little info on this.
One other thing I had to go to the hospital again because my pufers were'nt working again. He told me methetrexate can cause pulmonary fibrosis, and to tell the doctors in Toronto about whats been going on with my breathing. Any info would be great.
I know these things are minor comped with all the things that everyone is going through here, beings my problems are external and you all having it internally. But I just was'nt sure where else to go. Is there a site for people with this type.
Thank You
best of luck to all

#2 jefa

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Posted 04 July 2007 - 08:45 AM

Hi, Dana

I sort of remembered your name, but not your situation, so I went back and read your previous posts. In the other two threads, several people gave you good advice about seeing a scleroderma specialist or at least a rheumatologist. Have you seen a rheumatologist? Who is it that has prescribed methotrexate for you? You mentioned three sympathectamies in the other posts, two on your legs, if I remember correctly. What were these for if your linear scleroderma is on your ribs and right arm? The problems with pulmonary fibrosis and methotraxate were also posted as answers to your other posts. I will add a link to the other two threads here for your convenience as there is good advice in them, in case you have forgotten them. I agree that you should have all the cards on the table before you decide on other procedures, but think you should have one central source of information that you can trust.

http://www.sclero.or...o...

http://www.sclero.or...o...

In the meantime, let me add my welcome belatedly.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#3 janey

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Posted 04 July 2007 - 01:39 PM

Dana,
Thanks for posting again and letting us know how you are doing. It sounds like your neurologisthas order some good tests. He's also given you great advice about seeing someone familiar with scleroderma. So I'm going stress what I've said before and what Jefa is stressing - please see a rheumatologist and if possible, a scleroderma specialist. I switched pulmonologist because when I developed lung problems, my pulmonologist at the time wouldn't treat me because "It wasn't that serious." My new pulmonologist, who has treated scleroderma lung A LOT, emphasized the importance and treating it early. So she jumped on it and gave me some meds that are aleady resulting in improvement. Of course the first thing she did was take me off methotrexate!

My rheumatologist did prescribe a muscle test (can't remember the name) but it's non-invasive and tested the health of the muscles by applying small electrical pulses through the muscle. Of course, that was one of many tests. I really got tired of it all, but am glad that I stuck with it because we caught a lot of stuff and eliminated some potential problems. So hang in there Darlin'.

Please let us know how your tests turn out.

Big Hugs
Janey Willis
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#4 dana

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Posted 05 July 2007 - 01:43 AM

Thank you for getting back to me. I understand what you mean about seing a sceroderma specialist or rheumatologist but I'm reluctant to ask and take up a doctors time that maybe someone else needs more than myself. Thats why I just go where the doctors send me. Don't get me wrong I'm glad you have the courage to do it, and the intuition to now what to do. But I'm lost as to what to do this things driving me nuts.

#5 bawana

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Posted 05 July 2007 - 10:05 AM

Hi Dana

Jefa and Janey have your concerns covered pretty good.
I just want to help you understand that YOU are just as important as any other patient that the doctor's may have. And your scleroderma is just as concerning as the rest of us, it's just a different form of it.

With the many years that I've had to deal with this, I've learned that you have to stand up and demand as well as being choosey about who you're seeing.

There are allot of doctor's out there that know nothing much beyond the text book when dealing with scleroderma. You need a good doctor that knows the disease.

LOL...I am at the point , that in alot of cases....I interview them (so to speak).
If I don't like them .....they don't get my business...lol
If you were here in Alberta , I could tell exactly WHO to see, but I'm not sure anymore on the Ontario doctor's

So, check around, ask questions and make sure you get your anwsers.
This is happening to you , not them and the more you know and learn, the better off you'll be in handling the disease.

Take Care and good luck
Bawana