Preventing strokes

Will an ongoing regim of prednisone prevent strokes or heart disease? What about aspirin?Does not aspirin promote bleeding-- and I have bled in almost every way, quantity, and organ or system (so far my gall bladder and appendix have been spared--truly a blessing!). Specificaly, bleeding from nose (first in 60 years), small hemorrage in eye, outer portion of ear, profuse spontaneous bleeding in small spotaneously generated lesions on skin: arms, knees legs, feet, cuticles, small cerebral hemorrhages, bleeding from at least 3 organs in GI system (8 required transfusions), gums, and urinary tract sonewhere. (It is apparent to me that I have secondary vasculitis--Nothing is apparent to any MD because, I have ascertained they are utterly unacquainted with the idiosyncratic nature of most autoimmune disease) MY MD doctor tho at times affirming the presence of some idiopathic autoimmune has attributed my fevers to my hypothalmic, undoubtedly and severely damaged, by taking medicines; initially conceding my staggering, numbness, abrupt, unprovoked and unstoppable falls, and loss of consciousness to bleeds in brain, he changed hus mind and again implicated the medicines and also alcohol (he knows I do not drink). But above all he and my mother believe I have been putting on a medical charade for years in order "to feel special." He only admits to my having multiple transfusions and death-defying pneunonia b/c he talked to the doctors treating me.

AS for the MDs themselves, they have come up with these: impetigo, constipation, contact dermatitis, myelodysplasia (tho my bone marrow biopsy specifically and emphatically ruled it out), my do-nothing 10 year old hiatal hernia, aggressive, untreatable lymphoma, and an overly large space between the two hemiispheres of my brain, and falling out of bed on my Adam's apple...it goes on
I know I ramble too much but trily just about everyone thinks I.m delusional or staging an unloved,lonely golden ager 's last bid for human contact or 5 years of fun-filled performance that only discloses my medical ignorance.
Actually, I am quite medically literatet and have often told bro and others that if I had chosen to fake a life-threatening illness, I would have picked something with more familiar, more sequential, and more related symptoms--like chronic fatigue (!) or Athlete's foot.
Does anyone know that the 1982 Taber,s med dictionary does not even contain the word "autoimmune." I believe it was that yearin which HIV was isolated and by accident other malfunctions of the immune system (many of which were not known but called something else with a tragic number of deaths. A very good friend developed an Fuo in the summer of 1988; he had out-patient testing of all kinds; then according to the then and there protocol for FUO's was hospitalized for further, more complex diagnostic measures.Absolutely nothing turned up.FUO persisted.
A few weeks before he died I sat next to him on the hospital bed--he was broad as ever in physique--no noticeable
weight loss at all. About 10 days later he had a serious heart-attack; they pulled him through it. Then his doctor located an MD in CAnada who seemed to have some answers--and indeed he did, my friend had PAN a serious vasulitis of major veins and arteries. But by the time of this pronoucement, his vessels virtually broke and he died within 36 hours. If only they had known to administer prednisone--and if only I knew what I know now--why he showed no signs of internal bleeding, why his hemoglobin was great--more than great--and why according to every scale he had lost no weight. Thanks for your patience.  Corazon

[mercygracious]

Why do you believe that you have secondary vasculitis and not primary?  How was your friends PAN diagnosed?  I don't understand how you could go through what all you have been through and some doctor not know what the heck you have.  I am confused!!!!  Did you ever have a brain injury?  What have been your brain symptoms?  I am worried about getting a stroke or blood clot and even dying from this.  My docs are of no help to me either!!!  I AM SCARED!!!!

[Corazone]

Dear Mercy:

I thought for about 3+ years that I had PAN or some other primary. About 1 1/2 years after several transfusions for GI bleeding, I developed some stuff on my skin. One thing was obvious--I had purpura that did not blanch; there was no blackening or tenderness so these were not bruises. Also--the locations:  I had one huge purpura that ran horizontally across my neck with midpoint being my Adam's apple---dermatologist said I could have fallen out of bed...I said how could I fall and hit middle of neck without knowing it...he shut up. And I have other proof positive of bleeding beneath skin--petechiea ---lots of red dots under skin represent blood leaked from damaged vessels.  And internally--as I said blood coming from 3 different GI organs but no tear or ulceration can be found. Even pill camera and 6 endoscopyies, etc cannot pick up on a tear in a vessel....Then at Christmas I realized I had lupus--other symptoms came into focus. Then over a 5 day period in January I developed artheritis--joint by small joint. Probably Forresst Gump with a massive head injury could have made diagnosis from the swelling...but I went to rheumo who deals only with RA (I asked when made appt--but they lied). After a wait of 4 1/12 hours she breezed in--looked at records I had brought--made no comment when I asked questions about any other autoimmune disease--examined my joints and said I had arthritis."tHAT'S ALL" I was supposed to have blood work, but when I had been there for 5 full hours and no blood work in sight, I just split. Bill for her detailed comprehensive evaluation; NEARLY $600.00


Just briefly about head stuff: walking into sunroom my legs gave way. I tried getting up holding onto something but just fell again. I do not know how long it took but at some point I crawled to phone.  No  coordination for the longest time--and I cannot remember this but hours later my mother said I had called her and she called someone else who came up --I was still on floor--took time for me to stand even shakily and I could not write.
And my speech was slurred. Also, I do not remember what happened --what I was doing or where exactly I was--for a full 6 or so hours before the fall.. There are other instances--a fall--amnesia--and later on standing in my kitchen talking with a friend, I told her that I knew I was in Atlanta, but there was one weird thing: my sunroom which I could see from kitchen--was in New York (I told her I knew it sounded nutty, but tho hard to explain, it was true.) And I told my friend to go downstairs to my car...He said, "You mean upstairs." Yeah, whatever. So he went to the door and I said where are you going? He said you want me to go to the car. I said--"You are going to my bedroom. The front door is the other way!! What's the matter with you??" Well it was me--I really thought the door to bedroom was front door and visa versa--by the way I have lived here for 20 years.
If I relied on doctors to treat, test, and/or diagnose me, I would be dead. And in large part my death has been prevented by a sort of accident of fate.  At age of 4 mo I began developing one of 3 chronic misery-producing and sometimes death defying conditions that I was supposed to grow out of..Grow out of? Grow worse esp in last 5 years.  Treatment is PREDNISONE--really the only effective med for autoimmune diseases as well.  Actually, the 3 conditions occur b/c of misfiring of immune system--so I am just full of it!
Corazone
Have you any reason to believe you have vasculitisOR BLEEDS IN BRAIN? I have been researching and studying my constellation of symptoms for nearly 5 1/2 years--and I can answer most questions about autoimmune. I am willing to answer any quesstion posed, but recall that I am not a doctor--and if you describe something that is in serious need of prompt attention, I will tell you so. But mercy dear do not panic--no two lupus patients are ever alike.  Are you cutaneous or systemic? Take care.