Scleroderma Information » Scleroderma » to whom it may concern….
Question:
Thak you so much for responding to my letter, I dont know where your from but the drs. here just blow me off,Im from Southern Illinois,and i have a specialist thats from Chicago, thats ran every test on me imaginable, but thats also been at least 5yrs. ago,they act like they know when realy i know tey dont thats what discourages me so much,you are so lucky to have a dr. to work with you,I guess if it gets real bad i could find a dr. but for now i just play it by ear and do what i keep doing.My kids keep me going most of the time. Plase respond Id love to compare syptoms and stories,if you dont mind. Thanks again! XOXO
Response:
I was diagnosed from an ANA test with 1:1280 titer, and the rheumy’s observations. – Hide quoted text — Show quoted text -Nell wrote: > >===== Original Message From IOU…@webtv.net (jose) ===== > >ive been diagnosed w/scleroderma and raynaulds for about 9yrs. now, > >please let me know how exactly you were diagnosed and what they said, > >because i know quite abit abot this and trust me doctors dont have a > >clue about whats going on w/us. its sad but true. Please respond, id > >like to someone about this. > I was diagnosed in December 1997 when I thought I had frostbite. It wasn’t > frostbite–it was an ulceration. I have a good rheumy who keeps on top of > things. And read stuff on my on, which he encourages. My reading and things > I > get from this support group I take back to him and we actually discuss > things. > I’ve also had good rapport with my family doctor. Unfortunately he’s moving > his practice to another state so I’m having to "train" a new doctor (who he > recommended). So we’ll see how it goes. > Help your doctor(s) get a clue. The more you discuss with them, the more you > and they learn. Some are hard-headed, but then, so are some patients<g> And > some folks live in areas where they just don’t have the doctor available who > would be the most help to them. > Take care, > Nell > ———————————————————— > Get your FREE web-based e-mail and newsgroup access at: > http://MailAndNews.com > http://freepages.religions.rootsweb.com/~isleofjersey/index.html > Create a new mailbox, or access your existing IMAP4 or > POP3 mailbox from anywhere with just a web browser. > ————————————————————
Response:
>===== Original Message From IOU…@webtv.net (jose) ===== >ive been diagnosed w/scleroderma and raynaulds for about 9yrs. now, >please let me know how exactly you were diagnosed and what they said, >because i know quite abit abot this and trust me doctors dont have a >clue about whats going on w/us. its sad but true. Please respond, id >like to someone about this.
I was diagnosed in December 1997 when I thought I had frostbite. It wasn’t frostbite–it was an ulceration. I have a good rheumy who keeps on top of things. And read stuff on my on, which he encourages. My reading and things I get from this support group I take back to him and we actually discuss things. I’ve also had good rapport with my family doctor. Unfortunately he’s moving his practice to another state so I’m having to "train" a new doctor (who he recommended). So we’ll see how it goes. Help your doctor(s) get a clue. The more you discuss with them, the more you and they learn. Some are hard-headed, but then, so are some patients<g> And some folks live in areas where they just don’t have the doctor available who would be the most help to them. Take care, Nell ———————————————————— Get your FREE web-based e-mail and newsgroup access at: http://MailAndNews.com http://freepages.religions.rootsweb.com/~isleofjersey/index.html Create a new mailbox, or access your existing IMAP4 or POP3 mailbox from anywhere with just a web browser. ————————————————————
no comment untill now