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  1. #11
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    Michele,

    One Centimetre per month does not sound correct. I was told one Millimetre (or less) per month is actually more realistic. But it sounds like you are improving over time, slowly mind you, but progress none the less. Most excellent. Take care.

    Hal.

  2. #12
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    Mitch,

    Yes hooking up with a Rheumatologist who has other Wegs patients and understands the disease is critical IMO. For example when I met with mine last week and we were reviewing the change in medications, along with the frequent bloodwork and monitoring I will require in the weeks and months ahead, she was able to relate where-I-am to similar experiences of her other Wegs patients. She mentioned that now my biggest risk is a flare up of the disease, and the things I need to do daily to try and prevent that, along with the symptoms and main triggers, was very helpful to me.

    I will send you a private note later with my email address .... when diagnosed I did find that being able to email with other people going through this was great.

    Hal.

  3. #13
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    welcome Mitch! Yes get in touch with a Rhuematologist, preferably one who specializes in WEGs. We are here for you.
    Coffeelover

  4. #14
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    Welcome Mitch:

    My neuropathy is similar to Hal's and others in many respects but one significant difference is that I had neuropathy for years from diabetes before my Wegener's disease. The Wegener's disease has made it much worse and it has now spread to my hands. I have been told recovery is generally very unlikely but severity of symptoms will vary for me according to my blood glucose levels. I think it was also worse when the Wegener's was more active. My endocrinologist tested me last week with the tuning fork and I couldn't feel any vibrations on the bottom of my feet. The length of time you feel them is a pretty good measure of neuropathy severity and my times have gradually decreased over the years. I can still feel some tingling higher up on my feet and legs.

    One way around the shoe problem issue is to go to a orthotic shoe place where they will make a custom insole for your foot and order the right size and type of shoe for you. Most insurances will even pay for these shoes and you can get a pair every year under most plans. Mine look very dressy and are extremely comfortable (think of tailor made suit).

    I didn't find any meds of much help with my neuropathy symptoms. Neurontin helped some with pain but created more balance issues that had me bumping into walls. Now after the Wegener's I have inner ear damage that makes my balance very precarious. Testing by physiatrist has established that I have nerve damage to both sensory and motor nerves which affects my ability to walk but I can now go short distances with help of cane and am working on increasing my distance. Best wishes to everyone for improvement.
    Last edited by drz; 02-17-2011 at 03:34 PM.

  5. #15
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    Thank you, drz, for your comments. They are most helpful. I am Mitch's wife, Danell. He wants you to know that he will get back with you. Today hasn't been a good day for him. I did make a copy of your reply and he has read it. We visited the physical therapist today. He thinks with the help of a type of brace, which has been ordered specifically for him, he will be able to graduate from a walker to a cane. This was good news to hear.
    Again, thanks so much.
    D.

  6. #16
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    Thank you, Michele...I've been down for a couple of days...weakness...will get back to you. Yes, everything helps at this point, especially hearing from those who have the neuopathy.

  7. #17
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    Welcome Mitch, and all. I started this journey with swelling of the feet, ankles and legs. I think the neuropathy is WG and not the drugs. That being said, there is light at the end of the tunnel. I was diagnosed in August 09. and deemed to be in remission in 6/10. Since then the neuropathy in both legs has subsided incredibly. I can now wear my shoes, walk in the snow and I don't wobble. The bottoms of my feet still worry me at times but it is not pain, rather like walking on bubble wrap without the noise. Last week I assumed the pose of a baseball catcher and stood up without help. First time in probably two years. Always hope
    Dale

  8. #18
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    Quote Originally Posted by Mitch View Post
    Thank you, drz, for your comments. They are most helpful. I am Mitch's wife, Danell. He wants you to know that he will get back with you. Today hasn't been a good day for him. I did make a copy of your reply and he has read it. We visited the physical therapist today. He thinks with the help of a type of brace, which has been ordered specifically for him, he will be able to graduate from a walker to a cane. This was good news to hear.
    Again, thanks so much.
    D.
    A walker is more secure but because of its size it is more difficult to carry with you so you are more likely to leave it at home and not have it with you when you need it unless you are unable to walk at all with it.. A cane is much easier to take along and more convenient so you are apt to use it more. I have two canes, one in the car and one in the house and will generally use one if I am walking any distance outside the house.

  9. #19
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    I have a fold-up walker and when it's folded I can lean on it and roll it using one arm. It comes in handy, even using it that way.

  10. #20
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    Hal, I want you to know that we found online a rheumatologist today. (I am Danell, Mitch's wife, speaking for Mitch.) The importance of seeking a rheumatologist was totally out of our realm of thinking. We had no idea. We have a pulmonologist, a nephologist, and a neurologist; these men have saved his life; however they are all honestly saying that they are not experts in the area of Wegener's and continue to do the best they can. Thanks to you, I've made an effort to search for the correct type of doctor who specializes in this disease. I think I've found her.

    We will stay in touch. This lady, according to her web site, has had much experience in this field...publications, etc..

    I have called and left her info to get in touch with us. Should hear from her tomorrow. I feel good about this. Thanks!

    Danell

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