Peter

[PETER36]

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

[andrew]

Hi Peter and welcome!
Wow, you've gone through some troubles there . you were indeed lucky you saw the right docs in the right order. Funny how things just work out sometimes.

You are in good company re: the Prednisolone weight gain. Prednisolone is a wonder drug but it turns the average, mild-mannered human being into a rabid food-vacuum. I arranged for seconds and thirds with the dinner lady in hospital. They were very accomodating :-) I guess they just wanted to shut me up!

Cyclo can cause problems for some as well. I hope you'll find the Azathioprine/Immuran more to your liking. No numbness for me so I can't help you on that score, I'm afraid.

Kids are great for giving us a reality check. I don't have any so I lease one from friends when my head needs sorting out The little pirate (she's 10) beats me at poker every time

[RCOSSIO]

Peter,

Welcome to the site. I can say you had a doosey (70's word). I agree with Andrew...each individual has many experiences different but unique. I am fortunate that my Prednisone has not made me gain weight, and I don't have the hunger pangs...but I can say that the PRED has given me a face like this . I just told my wife to paint my face orange, put me on a window sill and light a candle and call me Jack!

Either way: glad you are onboard, and remember "Live for the NOW!"

[Carol]

Hi Peter
I was diagnosed in May this year so I'm a newbie too. I too have the numbness - mine is in my feet and the tips of two fingers but I can "spike" anywhere in my body - it will suddenly tingle on my face or my arm etc. Like you they seem surprised by it but it seems common. It actually developed as the last symptom after I had started treatment. One day I'll write my story and put it on this site. I keep on at the doc's as i'm worried if I don't it might become permanent - but when I really analyse it it is improving all the time. My rheumotologist is to send me to a neuropath? to have nerve testing done and then they will decide what to do. He had mentioned a few more t reatments of cyclo?? which I've had once when my whole hand went numb within about ten minutes. So really don't know what's ahead of me. Keep at it with the docs and I'd love you to keep me posted. Read my posting re the Vitamin B's - I have ordered them from US but they have not arrived yet - do your own research on this tho'.
Regards
Carol

[RCOSSIO]

Peter,

The drug that helped me substantially was Lyrica 3x times daily 150MG prescribed by my doc. The amount was slowly reduced as the weeks went by and I stopped taking them 3 weeks ago. The slight numbness continues but improves daily as my swelling diminishes. Doc told me that the pressure of the swelling restricted the nerves and now they are slowly healing back, but will take time. If you can, I suggest you strongly get some Lyrica for the pain and continue with the Vitamin B-12.

Hopefully this will help. If you get some muscle cramps and tightening, I suggest you take some magnesiun to counter your drop in potasium. But like always consult with your doc as other symptons can mask what is truly going on!

[hotnorm]

diagnosed with WG in June 2008 i too have my complete right side from head to toe feeling numb to touch or hot and cold the doctor thinks it's neurological damage i will wait for time to heal this problem

[crackers]

re numbness

i had a stoma reversal in sept last year when i woke up after the op my right thigh muscle from hip to knee was numb.i've had the test where they zap you with electrical pulses and i'm currently waiting on the results of a biopsy on the muscle.it could be steroid related or a trapped nerve in the hip,either way it's a wierd sensation.

[jola57]

I was diagnosed Nov 2006, numbness and dropped left foot developed May 2007. I recovered but both feet have neuropathy, left worse, no feeling on outside just feels like needles when touched and hurts badly if pressed upon. I had all neurological tests, biopsies etc. They didn't offer Lyrica and I guess I have to live with it. I'm on my secon treatment with cyclo (this time not cytoxan but procytox) and 50 pred. I've gained 25lb since Sept 2008 (that plus the gaining of 25lb since Nov 2006). This time around I had nodules on lungs and blood in urine. The rhumy thinks I will be on drugs for a year. Overall though I feel fine, work full time (but not 9 to 5), have a great outlook on life, live normally (as much as I can) do not complain, and take every day as it comes. I have lost younger cousin to cancer, 2 older ones to heart, this past year so I will not complain. I will be 52 on the 17th.
Issues with docs, they know less than we do and we have to keep on them to help us with symptoms. There is no cure but our quality of life is a priority to us and the docs must be made aware that we will not settle for just getting by. Report each symptom and make sure something is done about it.

[Carol]

Hi Peter
I have been left with numb feet - they never seem to be able to give me an explanation but this numbness has followed severe nerve tingling which has gradually gone away. My rheumy says its a stage of healing and that it should eventually repair itself. Here's hoping. I hope yours too gradaully goes. It's summer here so I think that also aggravates my feet. regards Carol