I'm not sure if when I reply to you it shows up on Thread. I already tried to reply but don't see it on here so I will try again.
Can you PM me your husbands Doctors name and information in Edmonton? Maybe my Doctor will be willing to consult with his Doctor.
Thank you
Becky, in one of your posts you mentioned possibly in remission due to prednisone when your biopsy was done.
For what it's worth I remember the first time i seen my rhumy in a somewhat emergency visit, he gave me the option to start a treatment that day that would make me feel better. Or wait for all of my tests to be done and come back. As I recall he said treatment could blur the results and mask the illness. We all know prednisone would have been the treatment I would have been given.
Dx'd December 2000
Hello from Alaska, this morning my 20 month old daughter was diagnosed with ANCA, I am new to this. Wondering if other children her age have this & what will it be like? Im scared....my husband is scared.
I'm sorry. I am so new on here and still so confused with my disease that I really am not much help to you. I noticed that you posted in new members and I'm sure you will find some help, answers and support.
I have only been on here for a week or so and have already communicated with some very nice people! It is a great forum with wonderful people!
Becky,
Wishing you all the best with further investigation and treatment of your Wegs. You have found a very good place to discuss all your concerns and there is somebody here 24/7 to chat with. Glad you joined us.
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
hi Becky i am also from Calgary was diagnosed in Sept 2008 i have been going to the rocky view there are 2 doctors there that have been awesome who are you seeing maybe we can share some info let me know
I thought I would update you all on what happened at my appointment on Monday with my Pulmonary Doctor (Dr. 1). I went in with a list of questions about the diagnosis I was given and why they decided on Imran. I also wanted the results of the tests that the second Pulmonary Doctor (Dr. 2) had ordered. She did not go over the results with me when I had seen her. I also questioned if I should be seeing a Doctor who specialized in Vascular disease. I also requested that he consult with a Doctor on the Vasculitis Foundation website. I really tried to make him understand that I need a more specific diagnosis.
So all these question and I still don't really have any solutions. I did get the results of the test. They were all "good". I was told they are not convinced that I have Wegner's but I do have some kind of Vasculitis. My biopsy was looked at by three Pathologist- "the best Pathologists in Western Canada". He said they are giving me Imuran because I did not want to take Cytoxin-which is true because he said he wanted to be 70% sure it was Wegner's before I took it because of the side effects. I supplied him with some names of Doctors in Calgary who have more experience with Vasculitis (thanks to members of this forum who supplied me with these names). He told me I don't need those doctors. As for the doctors on the Vasculitis Foundation web site (and recommendation from a member), I was told that these Doctors don't sit around waiting for emails and would not likely get back to him or if they did it would take months. Also, the results were still not back from the TPMT test. I asked how we could check on it and he said his receptionist/assistant could Check on it. So basically that appointment did not get me anywhere.
I spoke with his Receptionist today, Thursday, and she said the results were not back, that she had never heard of that test before and she doesn't know if the Dr knows how to read the results. I decided to call the Lab myself and was told the results were back and the Dr. should have had the results yesterday. I'm still waiting before I take the Imuran.
This week I did get the results from the skin biopsy. I was told the rash is either a reaction to medication or eczema. The funny thing is I did not start any new medication before the rash appeared.
I just don't feel well. I feel like my lungs are getting sick again. I am nauseous all the time. I have to force myself to eat. I am tired all the time. I'm just sick! Then I have to deal with the Stupid Doctor! The stress of everything is really getting to me. I'm not sure what to do now.
I am feeling helpless
Last edited by Becky; 11-29-2014 at 03:55 AM.
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