Awaiting biopsy

Hi Tracey it is a long time and it was a different doctor that had seen me and he looked about eighteen I don't think that I will have any fingernails by the end of the month

kindest Regards

Colin

Thats me back from hols had a great time and no flare ups, thankfully. Any word on your results yet cant belive they reckon 6 weeks i would phone them up i had my result in days. Are you still having the problems with joint pains and mouth ulcers etc.

Tracey

Hi Tracey that's great that you enjoyed your holiday and even better that you have not had any flare up's, I go to the clinic on the 31st so I hope that I get results then, but ulcers still popping up and sore gums my eyes are driving me daft with itching and I have started getting pain off and on in my left ear wake up during the night with the sweat pouring off me and when I came back from holiday I had lost half a stone in two weeks, but the pain in my hip is kind of taking my mind off things just now I just can't get comfortable at all it's sore to sit and sore to stand although I have a laugh getting showered in the morning it's like someone playing castinets with all my joints clicking away as I try to dry off, but I will let you know as soon as I get word.

Kindest Regards

Colin

Not too long now til you get the results Im still hoping its not Wegeners but not at all sure theres def something going on.

Let me know as soon as you can.

thinking of you,

Tracey

Hi Tracey Tuesday can't come quick enough, will let you know what the results are, Kindest Regards

Colin

Oh I bet it cant Coiln. At least if you get a definite diagnosis you can work towards getting some treatment. Not sure if the hip pain related to the Wegeners ot your previous accident. I def had some joint pains and inflammatin mostly my knees, elbows and wrists.

Well I hope you get some sort of closure tomorrow.

Waiting anxiously to hear.

Regards,

Tracey

Hi Tracey just back from the hospital and the consultan says that the ulcers are caused by my medication amlodipine but no blood or any other tests to find out about the other symptoms but I will see what my Gp has to say. But thanks for your support.

Kindest Regards

Colin

Well that is great news so obviosuly the biopsy didnt show anything sinister. Im really pleased. If you are still concerned about Wegeners ask your GP to do an ANCA blood test this is usually positive in Wegeners patients also i had a nasal biopsy as I had a lot of sinusitis which did not respond to ordinary antibiotics and thats when the alarm bells rang. I really hope its nothing too serious but show let me know. I think its important we have a bit of support from people having similar experiences.

Regards,

Tracey

Hi Tracey just to fill you in I went over to see my Gp today to see if the consultant had sent the letter but there was no sign as yet, I told the Gp what the cosultant had said about the medication causing the ulcers and she said that it would only cause swelling of the gums so she went in to her pc to see if the results were in there but nothing so she tried the intranet and no luck there so I am at a bit of a loss wondering who to believe but will let you know if I get any other news

kindest Regards

Colin

You are getting such a run around not good enough treatment really for 2010. Keep me posted. Are you feeling any better

Hi Tracy hope your well the ulcers on my tongue had cleared but they are starting up again and my nose is full of green gunk, eyes are driving me daft itching away I had been to a meeting and found myself falling asleep it was so hard to try and keep my eyes open and the next thing was that I was jumping awake again, the meeting was in Edinburgh and because I was driving I had not taken any pain killers so it could not have been them that made me drop off but it just feels like I have been given a pre med and have to fight to stay awake that I just feel so tired. But I will contact my Gp on Monday and see if my results have turned up.

Kindest Regards

Colin

Hi colin

Anymore update on your symptoms and results. Must be something other than side effects of your meds

Tracey

My wife was diagnosed with Wegeners 12 years ago. The problem in most cases is the length of time for it to be diagnosed due to ignorance of the disease by general practitioners. In my wifes case it got to renal failure before it was finally diagnosed by the consultant when she was admitted into hospital as an emergency and he was furious it had gone on so long because caught early although it would not have prevented it happening it would have been in a less serious state before treatment had progressed. In her case it affected kidney and sinus. She started with some very agressive treatment and had the plasma changed in her blood. She has one relapse and to date it has been controlled fairly well. She now knows what to expect and how to tell if things are not right if this happens she books a blood test at the hospital and gets in touch with the consultant via his secretary for him to look at the results (early warning) this is very true recently where she has had a cough for about five weeks so she went through this routine and the result is she had a blood test and the consultant asked her to have an xray and has since said he wants a CT scan so we await all that to see the results.