Search
Search
About
Log in
Join
Experiences with
Cerebral vasculitis
Posts
Communities
802 public posts
Filter results
Northamptonshire Telegraph yesterday 'A group of friends have pulled together to make a bakery recipe book in memory of their friend'
The group produced the book after they were inspired by their friend Debbie Gregson’s love of home baking. Mrs Gregson died in January, aged 49, after suffering from vasculitis. The group, who all met through their children being friends, are based in Earls Barton, Great Doddington and Wilby, and have
The group produced the book after they were inspired by their friend Debbie Gregson’s love of home baking. Mrs Gregson died in January, aged 49, after suffering from vasculitis. The group, who all met through their children being friends, are based in Earls Barton, Great Doddington and Wilby, and have
Suzym2u
Vasculitis UK
in
Vasculitis UK
11 years ago
I am very confused I was diagnosed with vasculitis about 3 years ago after many tests and a nerve and muscle biopsy.
Since then I have been treated for vasculitis. Recently however I was confused as I had a really bad episode where my lower leg and foot went completely numb I saw a dr who sent me to hospital to get this checked I had bloods done and this was sent to my consultant who stated in a letter he is unsure
Since then I have been treated for vasculitis. Recently however I was confused as I had a really bad episode where my lower leg and foot went completely numb I saw a dr who sent me to hospital to get this checked I had bloods done and this was sent to my consultant who stated in a letter he is unsure
Amanda51
in
Vasculitis UK
11 years ago
Another day another dollar
Another day, another dollar. Eh? Today's bonus was an end to end EMG and NVC test in neurophysiology. Good news: no new neuropathy I don't know about already; but lots of weakness in legs is confirmed. Then down to rheumatology for big dose of methyl pred and cyclophosphamide. So now it's 1:30 am and
Another day, another dollar. Eh? Today's bonus was an end to end EMG and NVC test in neurophysiology. Good news: no new neuropathy I don't know about already; but lots of weakness in legs is confirmed. Then down to rheumatology for big dose of methyl pred and cyclophosphamide. So now it's 1:30 am and
Wellsie
in
Vasculitis UK
11 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Can anybody simplify the anca test. ?
My daughter had bloods done today - some of which are for Anca test. - the results will not be available until tomorrow - she had already been confirmed as having wegeners disease & is receiving treatment for this Can anybody explain what the anca test is for in simple terms ?! I am a bit confuse by
My daughter had bloods done today - some of which are for Anca test. - the results will not be available until tomorrow - she had already been confirmed as having wegeners disease & is receiving treatment for this Can anybody explain what the anca test is for in simple terms ?! I am a bit confuse by
Bailey24
in
Vasculitis UK
11 years ago
Sickness following cyclophosphamide
My daughter has just finished her 2nd dose of cyclophos & now 3 days later has been sick & feeling nauseous - is this common ? Anybody else experience this ?
My daughter has just finished her 2nd dose of cyclophos & now 3 days later has been sick & feeling nauseous - is this common ? Anybody else experience this ?
Bailey24
in
Vasculitis UK
11 years ago
Dermatologists and vasculitis
The Dermatologists at the hospital I attend have told me that - although a skin biopsy shows I have vasculitis - I don't have vasculitis. I am confused. They had told me I had lymphocytic vasculitis - but now it's not... I'm seeing a rheumatologist at the end of next month thank goodness, because -
The Dermatologists at the hospital I attend have told me that - although a skin biopsy shows I have vasculitis - I don't have vasculitis. I am confused. They had told me I had lymphocytic vasculitis - but now it's not... I'm seeing a rheumatologist at the end of next month thank goodness, because -
ouscribe
in
Vasculitis UK
11 years ago
Could someone explain what is involved with kidney and Skin biopsy. also red spot update.
Well I saw the vasculitis team last week. The red small spots are vascular so I have to see a dermatologist who will do a biopsy on some. Anyone had this and what do they do, how much do they take? Also having a kidney biopsy can anyone explain what this is and how it is done like? They told me that
Well I saw the vasculitis team last week. The red small spots are vascular so I have to see a dermatologist who will do a biopsy on some. Anyone had this and what do they do, how much do they take? Also having a kidney biopsy can anyone explain what this is and how it is done like? They told me that
CathT
in
Vasculitis UK
11 years ago
Azathioprine, and nausea
Hi have had ten pulses of cyclophosphamide and have now started on azathioprine building up to 150mgs daily. Alls good except really bad feeling of nausea and a distinct lack of appetite. Trying to battle through it, but do you. Can anyone give me any positives that this feeling will pass and it will
Hi have had ten pulses of cyclophosphamide and have now started on azathioprine building up to 150mgs daily. Alls good except really bad feeling of nausea and a distinct lack of appetite. Trying to battle through it, but do you. Can anyone give me any positives that this feeling will pass and it will
cambs13
in
Vasculitis UK
11 years ago
Getting on my bloody nerves (literally)
Went to see the physio today; was told I have very weak legs and hips, and was shown today practically how bad it is getting. No more denial, it's not good. Given that it was only 10 weeks or so ago that I walked 31 miles in a day, is it possible that such rapid weakening is being caused by axonal motor
Went to see the physio today; was told I have very weak legs and hips, and was shown today practically how bad it is getting. No more denial, it's not good. Given that it was only 10 weeks or so ago that I walked 31 miles in a day, is it possible that such rapid weakening is being caused by axonal motor
Wellsie
in
Vasculitis UK
11 years ago
has anyone had a nerve biopsy.I was diagnosed with Leukocytoclastic vasculitis in 2011 from a skin biopsy,as it is mainly a skin vasculitis
I have suffered ever since with severe pain in both my legs. I was sent to have a nerve conduction test and was told the nerves in my legs were damaged from the vasculitis.and I should have had a nerve biopsy at the same time I had the skin biopsy.Although I have had no lesions on my legs for 12 months
I have suffered ever since with severe pain in both my legs. I was sent to have a nerve conduction test and was told the nerves in my legs were damaged from the vasculitis.and I should have had a nerve biopsy at the same time I had the skin biopsy.Although I have had no lesions on my legs for 12 months
Maddy43
in
Vasculitis UK
11 years ago
I have been to see my specialist about my hearing. Last October I completely lost my hearing in my left ear
I was told I needed grommets fitting but as I did not meet the criteria I would have to pay privately. This I did and for 6 months I could hear. I have since lost my hearing again in my left ear and been told once again I would have to pay out privately. This I can not afford to do, so I am going to
I was told I needed grommets fitting but as I did not meet the criteria I would have to pay privately. This I did and for 6 months I could hear. I have since lost my hearing again in my left ear and been told once again I would have to pay out privately. This I can not afford to do, so I am going to
valwood
in
Vasculitis UK
11 years ago
I have giant cell vasculitis ..on steroids and cyclo for 6 treatments one more to go - anyone suffer dizzyness blurred vision or cramp?
shella
in
Vasculitis UK
11 years ago
Flare treatment
So after just a 6 month break, and a quick walk across Worcestershire in good company it was back to treatment again today. Chemo session 1 (or 13, depending on how you look at it) done and dusted. Still not enjoying the feeling of speeding from 1g of methyl pred mixed with the yack from the 1g of
So after just a 6 month break, and a quick walk across Worcestershire in good company it was back to treatment again today. Chemo session 1 (or 13, depending on how you look at it) done and dusted. Still not enjoying the feeling of speeding from 1g of methyl pred mixed with the yack from the 1g of
Wellsie
in
Vasculitis UK
11 years ago
has anyone else got large vessel vasculitis , I was told this week I have this .my problem started 12 months ago with cramps and twitching,
pretty much all over my body .I was sent to a nuro who said I had isaacs syndrome .after a long battle with the medical team I was given a chest ct scan to check for tumors as I had a horrid pain in chest , on the scan it showed my large vessel plus some others had large vessel vasculitis . they say
pretty much all over my body .I was sent to a nuro who said I had isaacs syndrome .after a long battle with the medical team I was given a chest ct scan to check for tumors as I had a horrid pain in chest , on the scan it showed my large vessel plus some others had large vessel vasculitis . they say
lisaains
in
Vasculitis UK
11 years ago
Lupus Information Day
Vasculitis UK are delighted to have been invited along to a Lupus Information Day to be held by the East Anglian branch of Lupus UK on Saturday the 12th of October in Hinxton near Cambridge. As you may know, Lupus is an autoimmune disease that has many similarities to Vasculitis. In fact some Lupus
Vasculitis UK are delighted to have been invited along to a Lupus Information Day to be held by the East Anglian branch of Lupus UK on Saturday the 12th of October in Hinxton near Cambridge. As you may know, Lupus is an autoimmune disease that has many similarities to Vasculitis. In fact some Lupus
RichardE
Volunteer
in
Vasculitis UK
11 years ago
Can positive c anca be caused by cholestorol?
The rheumatologist i saw said perhaps my c anca positive could be high cholestorol...mine is 5.6... And that some people just happen to be positive for no good reason. My sinuses were probably the clearest and more pain free than in months with no bleeding in the two days prior...which is typical after
The rheumatologist i saw said perhaps my c anca positive could be high cholestorol...mine is 5.6... And that some people just happen to be positive for no good reason. My sinuses were probably the clearest and more pain free than in months with no bleeding in the two days prior...which is typical after
Tinkytink
in
Vasculitis UK
11 years ago
Worcs Way - Mission accomplished
After over 200 miles of training walks, many of which involved carry 28 pounds of weights in a rucksack (building up the legs for those hills), the big day finally arrived. Twelve of us set off from Bewdley at 05:50 am hoping to complete the 31 miles and 1560 metres of ascent over the Worcestershire
After over 200 miles of training walks, many of which involved carry 28 pounds of weights in a rucksack (building up the legs for those hills), the big day finally arrived. Twelve of us set off from Bewdley at 05:50 am hoping to complete the 31 miles and 1560 metres of ascent over the Worcestershire
Chris-Bromsgrove
in
Vasculitis UK
11 years ago
Kidney biopsy. l am having a kidney biopsy on the 10th July to get a definite diagnosis of what my consultant believes to be WG. ,,
I am a little nervous and wondered if anyone could Iet me know what it's actually like. This has all happened rather fast for me, 3 weeks ago I hadn't even heard of Vasculitis. Thanks x
I am a little nervous and wondered if anyone could Iet me know what it's actually like. This has all happened rather fast for me, 3 weeks ago I hadn't even heard of Vasculitis. Thanks x
skot
in
Vasculitis UK
11 years ago
First ever post...I have a positive c-anca...is it possible that i have no illness at all?
been unwell for 18 months, sinuses, throat, asthma type symptoms, fatigue...my ENT did a c anca test and it came back positive but didn't let me know till next routine Appt 7 months later.There seems to be no sense of urgency about follow up depsite the fact that i have been to docs a few times this
been unwell for 18 months, sinuses, throat, asthma type symptoms, fatigue...my ENT did a c anca test and it came back positive but didn't let me know till next routine Appt 7 months later.There seems to be no sense of urgency about follow up depsite the fact that i have been to docs a few times this
Tinkytink
in
Vasculitis UK
11 years ago
DILEMMA
I have a very dear friend who is very poorly in hospital with necrossa pancreaitis. I am a WG patient in remission, on 10mg prednisolone and azathioprine, so immunosuppressed. My dilemma is do I go to hsp to visit my very close friend (she isn't alone, she has family ) and therefore put myself at risk
I have a very dear friend who is very poorly in hospital with necrossa pancreaitis. I am a WG patient in remission, on 10mg prednisolone and azathioprine, so immunosuppressed. My dilemma is do I go to hsp to visit my very close friend (she isn't alone, she has family ) and therefore put myself at risk
fillyhome
in
Vasculitis UK
11 years ago
1
...
30
31
32
...
41
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
Vasculitis UK
669 results
LUPUS UK
89 results
Behçet's UK
21 results
View top 10 communities
Sort by
Most Relevant
Newest