Discussions By Condition: Vasuclar conditions

Anyone here with this condition?

Posted In: Vasuclar conditions 13 Replies
  • Posted By: Anonymous
  • March 18, 2006
  • 04:58 PM

Anyone here with autoimmune vasculitis?

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13 Replies:

  • Yes, do you have this also?
    Anonymous 42789 Replies Flag this Response
  • I have autoimmune vasculitis. It is associated with anti phospholipid syndrome
    Anonymous 42789 Replies Flag this Response
  • Hi, I have been going to neurologist, rheumatologist for 6 years trying to find out what I had.Flipflopped between MS and vasculitis, now they are thinking autoimmune vasculitis. Not sure what that means, only thing I have lesions on the white matter of my brain from the MRI (over 10 since 2001).I would love to hear more from you.
    Anonymous 42789 Replies
    • September 15, 2006
    • 01:49 PM
    • 0
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  • Have just been diagnosed with Microscopic Polyarteritis, which is apparently an autoimmune vasculitis. Am awaiting further tests. Do you know what specific type of vasculitis you have?
    Anonymous 42789 Replies
    • December 11, 2006
    • 11:05 PM
    • 0
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  • I have also been diagnosed with cerebral vasculitis. I have seen neurologist and rheumatologists for quite some time and still does not have a cause nor am I being treated for it. I've been taking prednisone since August and it has cause me nothing but problems. My cheif complaint is off balance and lightheadedness. I also feel a pressure in my head while sitting, lying or standing. The docs have said to me that this is a rare disease but can not tell me where to go or what to do for it. I am soooo tired of feeling off balance every single day. I have also been diagnosed as having pre menapause and I am wondering if this is part of or all of my problem. I need to know if anyone else is dealing with the same problem or diagnosis. If so what did you do for it. Do you think that stress can possibly be the cause of this? An Angiogram is what confirmed cerebral vasculitis. Please help!!!!!!
    Anonymous 42789 Replies
    • January 5, 2007
    • 11:03 PM
    • 0
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  • I have also been diagnosed with Microscopic Polyarteritis and have been under treatment for about 3 years. My MPA continues to relapse and I am on a steady diet of Cellcept, Pred, Avapro etc. There are plenty of internet sites that give information about the disease. One thing I have noticed about relapses is that they are associated with stress. My doctor has yet to believe me. I am interested in talking to anyone else with this condition or associated conditions.
    Aussie 1 Replies
    • January 9, 2007
    • 06:51 AM
    • 0
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  • My brother past of an aneurysm a year ago. He was alone when this happened so no help was available to him. I want to know how long this took. I need to know. I do know he was walking, he sat down and then they saw him laying down on the floor. When the police came, about 1 hour later he had past. I want to know what his last moments were like. I want the truth.
    Anonymous 42789 Replies
    • January 19, 2007
    • 05:56 AM
    • 0
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  • My husband died 10 years ago as a result of polyarteritis nodosa. It was mis-diagnosed 3 times. He would have died one month after diagnosis except that we put him on life support, in a coma until we knew what was going on.The immune surpressant drugs worked, they took out his immune system and he died of massive infections! We knew little about the disease then and keep searching for cause and cure for those still out there! I have since found that the life expectancy for PAN is maybe up to 4 years. We had 1 month!Find a good doctor and pray.
    Anonymous 42789 Replies
    • February 6, 2007
    • 10:07 PM
    • 0
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  • hello my brother passed away yesterday 6 weeks ago he was on a family holiday in mexico ! he came home went to doctors the next day they thought he had piles he was took in hospital on the 8th aug sent home on 10th said they had drained something on his bowl (absess?) he spent the weekend at home not well .on monday the 13th aug he was took back in hospital with a mini stroke put on to a ward on the tuesday he was in lot of abdominal pain he was so hot had fan on him! by this time he lost neally 3 stone by the thursday he was very ill had another stroke and was moved to intensive care WE STILL DIDNT HAVE A NAME OF WHAT HE HAD over the next few days his heart got fluid on he was serdated so he could feel no pain hes blood pressure was high hes skin purplish hes kidneys lungs bowls all affected he came out of satation once showed us he new we was there then sadated again .to rest his body the doctors couldnt give us any answers until day 14 when they was 90% certain he had polyarteritis nodosa day 16 died 47 years old a good dad husband son brother and friend gone and no answers how he got it r.i.p xx
    Anonymous 42789 Replies
    • September 9, 2007
    • 09:06 AM
    • 0
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  • Hi my name is Breaux and I have just been diagnosed with Polyarteritis nodosa. I was wondering if anyone could give me some advice as of what to do and what not to do? Um i'm still in a daze from being told that i have this, just trying to not think about it. Thx.
    Anonymous 42789 Replies
    • October 21, 2008
    • 00:26 AM
    • 0
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  • My husband died 10 years ago as a result of polyarteritis nodosa. It was mis-diagnosed 3 times. He would have died one month after diagnosis except that we put him on life support, in a coma until we knew what was going on.The immune surpressant drugs worked, they took out his immune system and he died of massive infections! We knew little about the disease then and keep searching for cause and cure for those still out there! I have since found that the life expectancy for PAN is maybe up to 4 years. We had 1 month!Find a good doctor and pray.i would like to know more about the symptoms your husband had. i am very sorry for your loss. i am 43 and have been dx with P.A.N. i have alot of questions without alot of answers. My rheumy has me on prednisone, methotrexate and colchicine. I have a positive blood test for ANCA. i would like detailed info from anyone with this disease. thank you and god bless
    penny5 1 Replies Flag this Response
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  • I have also been diagnosed with cerebral vasculitis. I have seen neurologist and rheumatologists for quite some time and still does not have a cause nor am I being treated for it. I've been taking prednisone since August and it has cause me nothing but problems. My cheif complaint is off balance and lightheadedness. I also feel a pressure in my head while sitting, lying or standing. The docs have said to me that this is a rare disease but can not tell me where to go or what to do for it. I am soooo tired of feeling off balance every single day. I have also been diagnosed as having pre menapause and I am wondering if this is part of or all of my problem. I need to know if anyone else is dealing with the same problem or diagnosis. If so what did you do for it. Do you think that stress can possibly be the cause of this? An Angiogram is what confirmed cerebral vasculitis. Please help!!!!!! Interesting. I am also dealing with extreme lightheadedness all the time however have not been diagnosed with Cerebal Vasculitis but rather just Vasculitis. This may not really matter since there are so many types of Vasculitis and many have the same symptoms as well as the same treatments. Presently, i`m on high doses of Prednisone and also Cytoxan. The Prednisone is causing problems with my blood glucose and I have what is called drug induced Diabetes which forces me to inject insulin everyday. I guess things could always be worst and i`m just glad I have a treatment plan in force now. I would be interested in hearing more about your condition if you see this message, I know it`s quite old and by the looks of it, you are not a registered user.
    Stan1954 6 Replies
    • August 16, 2010
    • 02:59 PM
    • 0
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  • hello my mother was diagnosed with P.A.N as she often puts it she got it seven years ago and the doctors only gave her up to one year she had blown them away after them saying that she will never walk again she has had many strokes since and she can only use one arm she also walks with a limp and she is very stiff after have strokes during the night she is only 47 we are trying to get her into a home but she won't go she was told that she was of seven in New Zealand now she is one of four
    Anonymous 42789 Replies Flag this Response
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