Search:

Thanks, I'll look into that!

Lost my hair when I was on Cx. But just on my head, not beard. Oh fun. Started to grow back slow a few months after I was off Cx. Got my first haircut in a year a couple days ago. :) Things do get...

I'm a little concerned about cost, honestly, but also tired of 'not really sure' answers, and 'let's wait and see' from the medical professionals I see here. I know my health is priority #1 and I'm...

I'm a little frustrated with the way my Rheumatologist has been handling my case and I only hear good things about the Mayo clinic. I live in Canada with our "free" healthcare system I was wondering...

Hello Poodle! Sorry to hear that you have Wegeners but I'm glad your sharing. I, myself have had both the cyc+preg and Rituximab treatments and would completely agree that the Rituximab was a lot...

I have this exact same issue in my left foot although I don't have the pain you describe. I'm not 100% sure when it started but I always have pins+needles feeling and I notice it most when out for...

Thanks for all the advice and tips everyone.
I'm going to get some referrals for a psychologist from some of my dr's and see how it goes.

:)

It seems that why I think I'm coping fairly well with my newly diagnosed Wegeners, I was thinking about going to see a psychologist because I have been having an influx of 'bad days' since being...

Thanks everyone, this helped put things into some perspective. I appreciate it.

Mine started with nose bleeds, joint pains and stomach aches. Was originally diagnosed with just sinusitis and was giving medication for this, none of which worked over a month period. I then became...

Cheers for the responses. I was on high dose preg for a while and now i'm down to 7.5mg as of yesterday (yay!). I'm looking at starting to jog again and I'm just not sure if I'm starting to early - I...

Thanks Michelle :)
Marta - no panic was caused just was having a discussion with my wife about your comment and we were trying to figure it out.

How many of you have had serious muscle/energy loss at one point after being diagnosed and what did you do to rebuild it and your overall energy?
Did it take much time?

I'm just looking for ways...

Thanks for the response Marta. I was hoping you could elaborate on comparing my immune system to my sons? Are you saying that he doesn't have any chance of having Wegeners or are you just comparing...

She's ... ok. I honestly had no idea why I was assigned a rheumatologist until I left the hosipital; didn't know what they did! Learned a lot about the medical system and how expensive Retuximab is!...

Thanks for the feedback! It was so weird not being able to stand up when the physiotherapist came by to see me. I think i scared everyone in the ICU because when she asked me to stand and I was...

Hello everyone! I just found this support forum the other day and have found it very helpful so I thought I would talk a little about my experience with this disease so far.

I was diagnosed with...