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Re: Re: Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-06-02 18:26:50

Well, I hate that you have to deal with this. What do the doctors say you can expect; ie, do they believe it will be managable?

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Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by d.- on 2002-06-03 13:03:48  |  Reply to this

thanks for the supporting words of comfort... my brother has MS, so both disorders definitely put us in the genetic garbage category. Life expectancy used to be ten years after diagnosis, but (they say) lupus is manageable and life expectancy can be normal (they say) as long as treatment is used. What do you know of lupus? Re: Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-06-04 05:03:41  |  Reply to this   I'm sure I do not know as much as you have learned. I know that it is an often insidious autoimmune disease with no know cure at this time. It's symptoms can range from being cosmetic to morbid. It seems to "prefer" females and can be harder on the young ones. Recent attention to autoimmune diseases seems to have directed the medical community to finding some more effective treatments. You are, I trust, seeking the most up to date providers and demanding their full attention. Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by d.- on 2002-06-04 13:33:19  |  Reply to this   I live in time-warp here, in this bizarre little desert town. Who would ahve thought Palm Springs to be so back-asswards? Certainly not me, but there you are... My point being that up-to-date anything is hard to find, especially in the health care area. I like my doctor. She's fairly approachable but VERY busy as there are only TWO rheumatologists to cover five cities and NONE OF THEM deals specifically with lupus. I'm taking what I can get. I check online for clinical trials yet the're all out-of-town. I must needs stay in town. I would guinea-pig in a heartbeat for stem-cell research! Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-06-05 19:46:31  |  Reply to this   Have you ever thought of writing to some people? Like, doctors at medical schools in your area that are involved in research, or pharmaceutical companies involved in clinical trials? It would take some research, but it may be do-able!