i'm back

[Guest guest]

greetings; I am jill oliver. i used to belong to this group before it was on yahoo. I reconize some faces and see a lot of new ones. I will give a breif history for all those who don't know me. 4/97 I had a sudden onset of orthostatic hypotension. I was given the diagnosis of dysautonomia by my primary and shy-drager by a specialist. I was bed bound for three years. I saw many dr.'s and entertained many different ideas as to what I had. I even went to Vanderbuilt where I was told that I was taking too many pain pills and I would be better in a week. It has been three years since then and I am sad to say that I am at the point where Jim "wobbles" was when he had to crawl on the floor. I saw about the 7th neurologist recently and it is still thought that I don't have shy-drager even though my symptoms are pretty much the same. I was referred to MAYO in MN but I don't think I will make it there. This last neuro said that he thought that if I should find the top researcher of orthostatic intolerance and go to them. Does any one know whom that might be? After three years of lying in bed I decided that I was going to fight and with the help of a new DR. and a new med my life turned around. I have taken adderall for a year now. I don't know the research to back this up but this med is an amphetamine that is given to kids with ADD. It increases my bp and pulse. Please don't get excited that there is a new cure all out there. This med is given to folks with POTS. Unlike SDS my pulse remains low when lying. I had a pretty bad systemic reaction to mediperine and can't take it. the florinef just blew me up and did not keep my bp up. I am not sure if I may have shortened my life span by all the activity I was doing. I am now mostly in bed which is kinda difficult since I am alone and facing homelessness in a few days here. My symptoms are OH, Pain in rear of head and neck, ataxia, loss of memory, night sweats, hyper reflexia (which means I kick the dr. hard when he taps my knee) clonus, sleep apnea, restless leg/body, fine tremors, insomnia, poor circulation, and the oddest sores on my scalp and eye brows (I look real funny with half of them scarred and missing)etc. I still have good days occaisionally but the bad days are increasing in frequency and severity. when i got a kidney infection last week I thought uh oh here we go. I can only swallow protien drinks and ice cream. that is my diet. Since I stopped taking pain meds I don't have urinary problems but if I take any kind of CNS depressant I have to cath again. Oh and I have constipation and incontinence. See what I mean so close yet so different. I am hoping that things will improve when wI am not under so much stress and in a stable environment. I need help!!!! I have exhausted all avenues here in florida. there are no assisted living places for the disabled. I can't qfford an apartment on SSDI. The HMO's all dropped their med coverage this year and my medications are $650 a month. Does anyone know of assisted living orgs where you can actually live in the states? I am willing to move anywhere at this point. Also if anyone know of a medical center that specializes in SDS MSA and what ever I have? I will appreciate any suggestions you have. sincerely Jill OliverGet your FREE download of MSN Explorer at http://explorer.msn.com