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Cerebral vasculitis
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Cannabis & Vasculiti
Cannabis oil, a controversial *treatment* that a few hundreds have tried and has had success where all other medication has proved unhelpful. I can't help but be disturbed by the idea the weakening the immune system is the only way to deal with so many diseases. I am as uncomfortable today and after
Cannabis oil, a controversial *treatment* that a few hundreds have tried and has had success where all other medication has proved unhelpful. I can't help but be disturbed by the idea the weakening the immune system is the only way to deal with so many diseases. I am as uncomfortable today and after
Jools52
in
Vasculitis UK
8 years ago
Primary cerebral vasculitis
I had the worst 5 month all my life.be on a life support mchine. They was going to switch mechine off.as I lost all movement from neck down.Just started to walk again.on 10 mg prednisolone of day.Just had Mir scan was clear. But still very dizzy and wired. Back in bed again.what can I do.
I had the worst 5 month all my life.be on a life support mchine. They was going to switch mechine off.as I lost all movement from neck down.Just started to walk again.on 10 mg prednisolone of day.Just had Mir scan was clear. But still very dizzy and wired. Back in bed again.what can I do.
beeryone
in
Vasculitis UK
8 years ago
It is Behcets Disease Awareness Day today
Behcets is an extremely rare type of Vasculitis - classified as a type of Vasculitis in 2012. It affects around 3,000 here in the UK. This is the page to the Vasculitis UK website explaining what Behcets Disease is. It is extremely difficult to diagnose and manage. http://www.vasculitis.org.uk/about-vasculitis
Behcets is an extremely rare type of Vasculitis - classified as a type of Vasculitis in 2012. It affects around 3,000 here in the UK. This is the page to the Vasculitis UK website explaining what Behcets Disease is. It is extremely difficult to diagnose and manage. http://www.vasculitis.org.uk/about-vasculitis
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
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Cns vasculitis
Got appointment for Lumber punture.Feeling emotional about it all.It's been 7 months of tests.And to think this test may either be the beginning or the end of it all.As if there is inflammation in the csf I have been advised about a angiogram to look at the brain. As they think I may have cns vasculitis.Which
Got appointment for Lumber punture.Feeling emotional about it all.It's been 7 months of tests.And to think this test may either be the beginning or the end of it all.As if there is inflammation in the csf I have been advised about a angiogram to look at the brain. As they think I may have cns vasculitis.Which
Hidden
in
Vasculitis UK
8 years ago
The newly elected ePAG (European Patient Advocacy Group) patient representatives have now been announced
This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe. 😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation
This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe. 😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Google Analytics for the VUK Website for Vasculitis Awareness Month April 30th - May 30th 2016
/FAQ Living With/ Diet Giant Cell Arteritis
Cerebral
Vascu
/FAQ Living With/ Diet Giant Cell Arteritis
Cerebral
Vascu
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Ongoing weight loss success
I have
cerebral
vasculitis
, since 1994, when I first fell ill at age 22.
I have
cerebral
vasculitis
, since 1994, when I first fell ill at age 22.
vivdunstan
Volunteer
in
Vasculitis UK
8 years ago
Osteonecrosis and other rare bone diseases
Hello Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury
Hello Over the past 10 years from the age of 50 I have had the spontaneous, transient osteonecrosis in both knees and ankles. It is transient in the sense that the outbreaks last about a year or so and it is spontaneous in the sense that the problems come on spontaneously (though a minor ligament injury
mickeymouse42
in
LUPUS UK
8 years ago
Exactly 4 years since a big decision
It's 4 years exactly since I had to stop the Thalidomide treatment for my
cerebral
vasculitis
, because it was causing peripheral nerve damage, which if not reacted to fast is permanent and irreversible.
It's 4 years exactly since I had to stop the Thalidomide treatment for my
cerebral
vasculitis
, because it was causing peripheral nerve damage, which if not reacted to fast is permanent and irreversible.
vivdunstan
Volunteer
in
Vasculitis UK
8 years ago
Primary angiitis
Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next
Need help,feeling very unsure.My neurologist wants me to have a LP.If inflammation is there he wants me to have angiogram and then possibly a brain biopsy.I have high wbc and have had visual loss in one eye among with pins and needles in hands and feet.Really scared.Have no idea what is in store next
Hidden
in
Vasculitis UK
8 years ago
Primary angiitis
Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just received appointment to see him again in December.So I am thinking it's not serious.Or will the hospital that I am having it done at relay results,as
Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just received appointment to see him again in December.So I am thinking it's not serious.Or will the hospital that I am having it done at relay results,as
Hidden
in
MPN Voice
8 years ago
Mrs
I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially
I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially
Carriacou1937
in
Vasculitis UK
9 years ago
Cerebral vasculitis
My 81 year old dad has just been diagnosed with
cerebral
vasculitis
and I dont see a lot about it on the Internet. Any idea on things like driving again after an episode and recovery time? Symptoms similar to other posts here started 3 months ago and he has been in hospital for 4 weeks.
My 81 year old dad has just been diagnosed with
cerebral
vasculitis
and I dont see a lot about it on the Internet. Any idea on things like driving again after an episode and recovery time? Symptoms similar to other posts here started 3 months ago and he has been in hospital for 4 weeks.
Tazzi22
in
Vasculitis UK
9 years ago
Vasculitis Specialist
Hi all, I wonder if anyone can tell me who would be our nearest Vasculitis Specialist for Microscopic Polyangiitis in the Dundee area please? At present my Mum sees a Renal specialist who we have no complaints about but I think it might be valuable for her to see a Vasculitis Specialist?? Also how would
Hi all, I wonder if anyone can tell me who would be our nearest Vasculitis Specialist for Microscopic Polyangiitis in the Dundee area please? At present my Mum sees a Renal specialist who we have no complaints about but I think it might be valuable for her to see a Vasculitis Specialist?? Also how would
SandraMic
in
Vasculitis UK
9 years ago
Google Analytics for the VUK website - 27th Jan - 28th Feb 2016
www.vasculitis.org.uk From 27th January - 28th February 2016 24,500 users 75,500 pages viewed Average time 21/2 mins Returning visits 26% New visits 74% Top Countries - UK, US, India, Australia, Canada, Ireland, Philippines, South Africa, Malaysia, Germany. Top 5 pages viewed Frequently Asked Questions
www.vasculitis.org.uk From 27th January - 28th February 2016 24,500 users 75,500 pages viewed Average time 21/2 mins Returning visits 26% New visits 74% Top Countries - UK, US, India, Australia, Canada, Ireland, Philippines, South Africa, Malaysia, Germany. Top 5 pages viewed Frequently Asked Questions
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
Second attack of cerebral vasculitis
Has anyone with cerebral vascultis had a second attack of it? After 7 years relatively free certainly from any new neurological symptoms, I have just spent two weeks in hospital after having collapsed losing my left side again as happened 7 years ago? It was all very frightening and i apparently had
Has anyone with cerebral vascultis had a second attack of it? After 7 years relatively free certainly from any new neurological symptoms, I have just spent two weeks in hospital after having collapsed losing my left side again as happened 7 years ago? It was all very frightening and i apparently had
milliewin
in
Vasculitis UK
9 years ago
Night sweats after stopping Prednisone
My finance was diagnosed with ANCA vasculitis MPA March of 2014. Needless to say he was on many drugs (including Prednisone) but now he's only on 150mg of Imurine (azathioprine) and has been prednisone free since Jan 25th,2016. My question: sometimes he still gets night sweats. Last night he had
My finance was diagnosed with ANCA vasculitis MPA March of 2014. Needless to say he was on many drugs (including Prednisone) but now he's only on 150mg of Imurine (azathioprine) and has been prednisone free since Jan 25th,2016. My question: sometimes he still gets night sweats. Last night he had
Christina1960
in
Vasculitis UK
9 years ago
Confused with blood tests
Hi I need some answer as I am a bit confused at the moment. I got some blood tests results which shows positive p ANCA, but the rest of ANCA results are negative (Inc. C, Pre3 and MPO). I called the Dr and he said it doesn't mean is facilities, but I am reading and reading and I have a lot of the symptoms
Hi I need some answer as I am a bit confused at the moment. I got some blood tests results which shows positive p ANCA, but the rest of ANCA results are negative (Inc. C, Pre3 and MPO). I called the Dr and he said it doesn't mean is facilities, but I am reading and reading and I have a lot of the symptoms
Nikita2012
in
Vasculitis UK
9 years ago
Rheumatoid Vasculitis & Epsom Salts
Hi all, I am currently having a bad flare and have been told that bath with Epsom Salts is a good way to relieve aches and pains. Has anyone else heard of this and, I know it sounds stupid, will it muck about with my meds?? Thanks :)
Hi all, I am currently having a bad flare and have been told that bath with Epsom Salts is a good way to relieve aches and pains. Has anyone else heard of this and, I know it sounds stupid, will it muck about with my meds?? Thanks :)
CHARLIE49
in
Vasculitis UK
9 years ago
Microscopic Polyangiitis
My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high dose prednisolone and several cycles of cyclophosphamide infusion and then went on to Azathioprine and low dose prednisolone and she has been on the latter for over a year now. Her mobility suffered hugely
My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high dose prednisolone and several cycles of cyclophosphamide infusion and then went on to Azathioprine and low dose prednisolone and she has been on the latter for over a year now. Her mobility suffered hugely
SandraMic
in
Vasculitis UK
9 years ago
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