New here...

[Hal]

Good morning Mitch and Danell !

Hey, I am pleased you located a rheumatologist with Wegs experience ... hopefully you can get an appointment to see her soon now. You never mentioned where she was located, but if you have been following one of the other threads here, you will see a lot of talk about the Cleveland Clinic. Angela is visiting there today I seem to recall, so quite looking forward to hearing her progress report too.

Mitch and I were diagnosed around the same time, and stopped taking CTX within a week of each other, so we are generally about in the same place. Danell, as we chatted about earlier, Mitch really should be on the follow-up medications by now (I am no doctor, just relating my similar experiences) in case the Wegs symptons start coming back. For example, I am now tapering up to 150mg of Imuran per day, currently at 100mg. In the brief time I was between the Ctx and the the 100mgs of Imuran I am currently taking, the crustiness in my nose started to reappear. It is like the Wegs is there waiting in the shadows to pounce back at the earliest opportunity ... disheartening if I think about it, but I don't ... instead focusing on the go-forward positive road ahead. I rinse my nose 2-3 times per day with the Neilmed solution, to keep my nose clear. Now that I am at 100mgs the crustiness appears to have tapered off again.... for example this morning when I cleansed by sinuses I really had to squint hard (without my glasses on) to see anything in the tissue.... so life is good again (smile). So there Mr. Wegs... I have taken my stick and poked you back into the shadows... stay there now (laughing at myself here).

Please continue to let us know how you make out ... looking forward to even more good Mitch-progress news ahead!

Hal.

[Sangye]

Mitch and Danell, I'm confused. Have you found a rheumatologist who specializes in Wegs, or just a rheumatologist?

[Mitch]

Actually, we found one rheumatologist at Duke whose specialty is Wegs. She's written numerous publications on the disease; she has done much research on the topic, also. I spoke with someone in her office today and, unfortunately, am finding that she hasn't taken new patients in 3 yrs. However, on the bright side, they asked for all of Mitch's records and want to deal with him as a patient. I just finished reading online about the rheumatologists she is associated with and find that they all deal with vasculitis, not Wegs in particular. I'm thinking, since they are all in communication with one another, that she would be the "go-to" expert. I wish we were nearer one of the major "B

[Mitch]

Excuse me, I guess I overtyped my message. I still don't have this site under control. As I was saying...I wish we were nearer on of the Big Four, but we're not, and neither of us are able to travel that far for various reasons. Thanks for asking, Sangye. Also, Hal, we appreciate your thread today. Hope this answers some of your questions. I can't tell all of you how much it means to us to hear from you. You've pretty much educated us in more ways than you know.
Danell and Mitch

[Carol]

I'm from Australia and I import from USA Nerve Support Formula for my neuropathy. It's a form of Vit B. You have to take quite a few a day - I take them for a few months then get tired of them as it makes your urine smell strong but I'm sure it helps. I realised when I went to the doc yesterday that the nerve damage had receded by about 2 inches in the last 6 months althugh when I'm on my feet too much they feel numb. The best thing under my feet is lambswool liners or the Australian invented UGH boots which have proper lambswool lining.

[Mitch]

Carol, I too have been on nerve support formula for a few months; however, at this point, both feet are still completely numb. Maybe I haven't given it enough time. I'm certainly happy for you that the formula is doing some good. I wear braces for safey reasons and go to physical therapy 3 days a week...so far no change, but I think I'm expecting too much too fast. Today my walker will be taken away and I'll be able to use a cane. That's one small step.
Thank you for sharing your experiences with me. It's always good to hear from someone who's "been there".
Mitch

[Sangye]

Mitch, transitioning from a walker to a cane is a HUGE step forward. Good for you!

[Mitch]

Thanks for the support, Sangye!!!!