The experts think i have this as i have lesions on my brain, but they have done MRI recently and no new damage but i still have lots of neurological symptoms. they have done bloods but they cannot find inflammation at the moment.
Virtually every area of my body has some symptom and every year i get more
Inclu:
Rashes , itchy areas of my skin that sometimes drive me to disspear
Various areas of stabbing pain, headaches confusion, back pain etc.... could go on for about two a4 pages
Anyway if i have had a primary cerebral vasculitis (that they say is now in active)
Can the primary shift to somewhere else or is it possible that you could have two primary vasculitis's?
I am at addenbrookes being investigated , all i wish to do is help these professionals to get me back into work, because at the moment i know i am a risk to myself and others as the very best i feel is about 70%, down to about 15% when rough.
Have been tested for lupus etc and nothing
Is it possible i have something else?
that mimicks vasculitis that they have missed, something quite rare that has not been thought of.
I do not want it to be sinister but if it is it will not ever beat me i far too stubborn.
Written by
zeusthegreat
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Your symptoms are a very bizarre mix. It could be that your cerebral vasculitis is actually a secondary form.
The only thing I can say for sure is that you are being treated in the best place. The team at Addenbrookes will also look for vasculitis mimics and alternative causes. John
Hi Zues: Oddly enough, I just had this conversation with my rheumatologist an hour ago! Around 1998, I had a stroke. After a 10 day inpatient stay and every invasive test imaginable, a team of top doctors in one of the Top Ten Hospitals in the USA, concluded I had CNS vasculitis (central nervous system vasculitis). They gave this 120 lbs. body 80 mg prednisone/day until I had the maximum weight of 210 lbs. (I am almost 5'2"). I had ALL the tells of being on steroids. Hump back, upper body weight, moon face, bright red pallor. When steroids did not stop the disease, I fired by my neurologist (whom had never seen a case of CNS vasculitis) and my rheumatologist very carefully picked out just the right chemo agent (cytoxan) and I was warned of all the ill effects. After only 6 cycles, bladder cancer reared it's ugly head, a direct ill-effect of cytoxan, and I have been fighting that for the last 2 years and am winning at the moment - that battle anyway. They thought the CNS was quiescent and APS was the primary disease. The treatment is relatively the same for both diseases. Unfortunately, I am getting some serious, serious migraines and deep bone pain, tiny red skin dots, traveling heart pain upon waking, and some other symptoms.
To answer your question, my rheumatologist explained it like this: CNS can mimick APS which is known to copy-cat MS and other diseases. To hope to get a clearer idea of which disease is rearing its head at the moment the most precise test available is an MRI/MRA with contrast. Unfortunately, these diseases can be so deep in the brain and so tiny in themselves that even these tests can miss the symptoms. The equipment fails the patient. But, like the rest of life, you do the best you can with what you have available. Thus a doctor must take what he finds in a medical history from birth, findings of a physical exam, verbal accounts of symptoms from the patient, the very, very limited blood tests we have and which can often be either read wrong or the test itself has a failure ratio that is not very desirable (another case of the test failing the patient). Finally, all the physician is left with is an educated guess. We are left to treat the symptoms, which are so varied.
In 1998, when the neurologist looked at my husband and me and "dead-pan" faced said that I had better get my personals in order as he only gave me 2 years to live. Two very sick years. I was very sick indeed, but it has been past 10 years. Probably, because I fired him!
We know much more now than we did then, but still not enough. Research dollars are few and far between and up against so much competition it seems an undoable task. Yet, we muddle on. Patients and doctors alike.
Good luck, Zeus! You know, when it comes down to it, does it make a difference what the heck they call it? What matters is that they DO NO HARM, can keep the patient comfortable and mentally competent for however long both doctor and patients' luck runs its course -whether that be a symptom-free 30 years or otherwise.
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