Re: Marg in BC;

[Guest guest]

Hi Aletta

Thanks for your reply, even though it,s disappointing to learn that you have`nt been able to find a specialist in MSA .I plan to keep looking...it`s very frustrating to trail around specialist after specialist and not get any real help ,very few look at the whole picture but only look at one symptom.I have a sympathetic MD but have had to direct my own treatment as she does`nt really know what to do for me other than suggest yet another specialist.I have learnt quite a lot from the Shy -Drager sites but it`s not the same as talking to fellow sufferers so I`ll proberbly be asking the group some very basic stuff over the next few weeks. I live in Revelstoke so it`s a little far to meet for coffee but I look forward to getting to know you I do enjoy your postings.Can I ask you if you have experienced much pain and if so what has worked to relieve it ? I have severe chest pain most of the time and have`nt found anything to help.

Bye for now, Marg

aletta mes wrote: Marg:I live in BC, I hope you'll have better luck than I have. Before diagnosis I spent years twisting in the wind with no support from the symptoms I suffered from, passing the time-frame for Canada Pension Plan. Doctors are reluctant to give a diagnosis which cannot be absolutely verified (malpractice to scary or easier to write it off as psychological, I don't know). Was often told that I should wait for the constellation of symptoms to make things more clear - I think we all know how varied our constellations are. I did at long last luck-out with a pleasant and helpful GP, who is learning about this alongside me. I've not been able to find anyone with any experience specific to MSA. I have a lecture tape of a teaching doctor addressing his students at "Lion's Gate Hospital" (to be kind I won't mention his name), ran through the basics (incontinance impotence OH). A student asked what else she should know, the doctor laughs - not necessary to go into you are unlikely to come across even one case in your practice. Statistically he is no doubt right, but it hurt to hear that. This doctor works with my sister (she's a nurse) at the same hospital, he has seen 3 MSA cases (my sister has worked with 2), if he could be helpful to me my sister would have yanked me there, but she advised not to bother adding no patient coming through there with MSA ever leaves institutional care. I know this is not what you want to read here. My advice get a good GP who does not mind learning a few new things or trying new things, and get a therapist, aside from your psychological well-being, they are excellent at tracking and monitoring progress, something a GP often has no time for.I don't know where you are in BC, but if you're in my neck of the woods, we can do coffee or something, you're always welcome (not a politeness, I mean that).

aletta mes, vancouver, bc canadahttp://www.aletta.0catch.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe