2? Nerve Sugery And Pulmonary Fibrosis
Posted 04 July 2007 - 02:51 AM
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.
best of luck to all
Posted 04 July 2007 - 08:45 AM
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.
In the meantime, let me add my welcome belatedly.
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Posted 04 July 2007 - 01:39 PM
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.
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Posted 05 July 2007 - 01:43 AM
Posted 05 July 2007 - 10:05 AM
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