PETER36
07-22-2008, 09:19 AM
Hi to everyone on the site
Like many of you I have recently been diagnosed with WG (March 2008) After having very bad mouth ulcers all over Christmas and New Year of 2007 which the GP's did not have a clue how to sort, I eventually had blood tests which threw up an underactive thyroid which they referred me to a specialist for and how lucky I am that that happened as at the same time i was also losing a lot of blood when going to the toilet and had a referral made to a gastric specialist.
With the two appointments only two days apart at the beginning of March, the thyroid specialist ordered more blood tests and a few days later I had a phone call to say I had antibodies showing up which indicated WG - it was only when he was telling me how serious it was that I actually started to listen and wrote the name of it down. I then did the scary thing of getting my girlfriend to enter it in on google and then wished that she hadn't!!!
The reason i say I was lucky that the thyroid specialist appointment came first is that the gastric specialist sent me for more tests and it turns out that I also have total colitis (another auto immune disease) - these specialists did not test for C-ANCA so I have been told that if the appointments happened the other way around the i would have ended up at hospital in an ambulance in a worse way than I was when I went in March.
Saying that though I didn't really have the typical symptoms of WG - so much so that my consultant Dr Laversuch sent me away for a fortnight and my god how did I pack up within that fortnight. Cuts I had on my hands swelled up and filled with puss, my knees were so painful I couldn't walk up the stairs and my tongue started swelling (on top of the ulcers)!
I was put immediately onto prednisolone infusions and wow didn't the weight pile on - they had to bring me seconds for every meal in the hospital otherwise I would have started eating the bed! I was then started on IV cyclophosphamide.
I haven't taken to cyclo that well - it causes my tongue to swell and the breathlessness is constant (although reading everybody's stories seems to be a constant thing for many of you). Today was my last course and am now being put onto Azathioprine.
I do daily experience numbness down the left hand side of my body which they are giving me an MRI scan for but if anybody else has experienced this i would like to hear from you as my specialist hasn't heard of it??
I'm trying to remain positive as I have a 3 year old boy and 18 month old girl who seem to have everlasting batteries so it would be good as I say to hear from other people who are going through what i am.
Peter
Like many of you I have recently been diagnosed with WG (March 2008) After having very bad mouth ulcers all over Christmas and New Year of 2007 which the GP's did not have a clue how to sort, I eventually had blood tests which threw up an underactive thyroid which they referred me to a specialist for and how lucky I am that that happened as at the same time i was also losing a lot of blood when going to the toilet and had a referral made to a gastric specialist.
With the two appointments only two days apart at the beginning of March, the thyroid specialist ordered more blood tests and a few days later I had a phone call to say I had antibodies showing up which indicated WG - it was only when he was telling me how serious it was that I actually started to listen and wrote the name of it down. I then did the scary thing of getting my girlfriend to enter it in on google and then wished that she hadn't!!!
The reason i say I was lucky that the thyroid specialist appointment came first is that the gastric specialist sent me for more tests and it turns out that I also have total colitis (another auto immune disease) - these specialists did not test for C-ANCA so I have been told that if the appointments happened the other way around the i would have ended up at hospital in an ambulance in a worse way than I was when I went in March.
Saying that though I didn't really have the typical symptoms of WG - so much so that my consultant Dr Laversuch sent me away for a fortnight and my god how did I pack up within that fortnight. Cuts I had on my hands swelled up and filled with puss, my knees were so painful I couldn't walk up the stairs and my tongue started swelling (on top of the ulcers)!
I was put immediately onto prednisolone infusions and wow didn't the weight pile on - they had to bring me seconds for every meal in the hospital otherwise I would have started eating the bed! I was then started on IV cyclophosphamide.
I haven't taken to cyclo that well - it causes my tongue to swell and the breathlessness is constant (although reading everybody's stories seems to be a constant thing for many of you). Today was my last course and am now being put onto Azathioprine.
I do daily experience numbness down the left hand side of my body which they are giving me an MRI scan for but if anybody else has experienced this i would like to hear from you as my specialist hasn't heard of it??
I'm trying to remain positive as I have a 3 year old boy and 18 month old girl who seem to have everlasting batteries so it would be good as I say to hear from other people who are going through what i am.
Peter