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    Question New here...

    My name is Mitch. I'm from a small town, Rockingham, in North Carolina. I was diagnosed with Wegener's in August of 2010. I have all sorts of stuff going on with me, as all of you do.

    The symptom that bothers me most is the neuropathy. It has left me unable to drive, write and ultimately, work. I have a kidney specialist, a pulmonologist, a neurologist, a physical therapist, and then my trusty family internist. I seem to get conflicting opinions as to the cause/future of this part of the disease. Some seem to think is totally due to the disease; others think the chemo and prednisone play a part and can cause some of it. Others say that once the chemo and prenisone bring the inflammation down the neuropathy will improve.

    I would welcome input from some of you Weggies out there! What has happened in your cases? We're pretty much walking in the same shoes. Not sure anyone would like to walk in mine at the moment. I haven't been able to buy new ones because my feet are numb; therefore, I can't try on new ones!! Don't know whether they would fit or not...

    Looking forward to being a part of this group! Because I am new here, I may be posting in the wrong section. Will take me a while to learn my way around. I'll appreciate any help you send my way.
    Sincerely,
    Mitch

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    Hello Mitch, welcome.

    Like you, I was diagonosed in August 2010. I was feeling exactly like you are now, with so much stuff going wrong and so many unknowns. My feet are numb, making it really hard to walk, stand and even taking a shower is a treacherous undertaking. Even though the feet are numb it is quite painfull to stand, so I am taking Lyrica as a painkiller to manage the pain. I have a collection of shoes I cannot wear too. I live in eastern Canada, and my part of the world is in the midst of winter, so even trying to walk to the car when it is slippery out is a challenge. Thankfully my neighbours are aware of my illness and have been great, out at 6am clearing the snow away from my spouses car so she can get out to work in the morning. My family doctor does not want me out shovelling the snow because my fitness has taken a hit, plus I often cannot tell where my feet are in the snow. Arrrggghhhhh.

    I am lucky in that I have a great Rheumotologist and Neurologist, who have been able to explain how the Neuropathy occured and how my healing should play out. You did not mention that you are seeing a Rheumotologist who understands Wegener's though?

    My understanding is the nerve damage was caused by the WG constricting the capillaries. This cuts off blood supply to the various organs and nerves. In my case the capillaries were choked which cut off the blood supply to my affected nerves, which killed them. Once your Wegs is under control and in remission, i.e. your bloodwork is showing normal, the healing "should" proceed. My Neurologist says that nerves grow very slowly, so "if" they regrow, I am probably looking at 2-3 years. All I can do now is wait it out and hope for the best.

    I am very optimistic though! Just last week I was finally taken off the Cytoxan! I am giving my body one week to clear out the toxins, then later this week I am starting Imuran, which is an Immusuppressant, so we'll see how that goes in the weeks ahead.

    I cannot see myself being fit to go back to work until my nerves heal. My balance is terrible and I would probably topple over if I hoisted my laptop bag over my shoulder and tried to walk, so best to, as my doctors say, keep thinking positive thoughts and concentrate on healing.

    I hoped that helped answer some of your questions, based on my similar experiences. As I always say, Always Look Forward, Never Backwards.

    Hal.

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    Default new info from Hal

    Dear Hal,

    The info you have sent has been MOST helpful. Man, I thought I was just sitting down here in the states by myself with this stuff!!! You don't know how much I appreciate your responding to this. Knowing there is someone else somewhere else who is going through this crap and at about the same stage as I makes me feel better. I would like to remain friends with you.

    You mentioned a rheumatologist....that's a new one on me. Something I need to check out. Thanks for that info. I'll talk to my doctors.

    I've learned more just being a part of this site in a few hours than I have from my doctors. You have been a part of that. I don't know how to stay in touch with you specifically since I'm so new to this; however, I hope you'll find me and we can exchange thoughts.

    Thanks,
    Mick

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    Hi Mitch I live in SC and see a Wegeners specialist at Cleveland Clinic. Hope you see a Rheumatologist soon to help sort everything out for you. You will get alot of help from this forum. Keep asking us questions.

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    Hi Mitch,

    I too have issues with neuropathy in my right foot. I am quite certain that it was not caused by the predisone and/or cytoxan as the numbness began just prior to diagnosis. I have had a number of conflicting opinions from doctors in relation to whether or not this will ever repair itself. I was diagnosed In December of 2009 and still have the numbness. Has it gotten any better? Yes. I went from coming home from the hospital and not being able to tolerate even shower water on it to now being ok with that. I also had a boot and a walker and then graduated to a cane and now use nothing to help me walk.

    I, like you, had an extremely difficult even wearing a shoe. For a time, the only shoe I could wear was my husband's crocs. I went through about 6 months of physiotherapy but the physiotherapist said that she couldn't speed up the nerve damage repairing itself. As Hal mentioned, it takes a very long time for the nerves to repair themselves. The number that I was given was one centimetre per month and based on what my foot feels like right now and the time that has elapsed, that is very generous.

    I was on Lyrica initially, but had a hard time tolerating it as my hands and arms became numb, so I then was switched to Gabapentin. I am now off of everything for the pain related to my foot.

    Just this week, one of my doctors asked how the foot was and he concluded that it will never repair itself. My specialist, however said that it could take years, but yes it will eventually heal. I am choosing to believe her opinion as I am a firm believer in positive thoughts, but she also is very well respected in her field and has seen this before. So until then, I will set aside my closet full of high heel shoes and realize some difficult challenges in the shoe department and hope for the best.

    Keep positive, Mitch! I know how difficult it can be-especially since there are only a choice few of us it seems that have the neuropathy component.

    I hope this information helps!

    Michele

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    Hi Mitch,
    Welcome. Add me to your growing list of fellow weggies who have had peripheral neuropathy involvement. Moderate to severe with considerable numbness of the feet, atrophy of the feet muscles, difficulty with balance and proper walking, both motor and sensory nerve damage - - and definately attributable to the WG per my neurologist. He says there may or may not be some recovery if the wegs gets under control. My WG battle is primarily lung related at the moment but the neuropathy was a several years' long prelude to the main event and, like others on this site, any change in the numbness of my feet now serves as a sign of whether the wegs is rumbling or if it is being held at bay. Good luck, Ron

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    Thank you, Michele! Your response gives me some good stuff to think about. We have never heard anything about rheumatology. Maybe you can enlighten us there. (Wife is doing much of this...reason for WE) You say you go to Cleveland Clinic. How far into Wegener's before you were sent there? We are wondering now if we need to visit one of the major clinics. How would you describe the difference in your ultimate welfare after dealing with the clinic? Do you think our internist can work with a specialist and maybe achieve the same results? Thanks so much, Mitch

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    Default response to Ron

    Quote Originally Posted by Thakator View Post
    Hi Mitch,
    Welcome. Add me to your growing list of fellow weggies who have had peripheral neuropathy involvement. Moderate to severe with considerable numbness of the feet, atrophy of the feet muscles, difficulty with balance and proper walking, both motor and sensory nerve damage - - and definately attributable to the WG per my neurologist. He says there may or may not be some recovery if the wegs gets under control. My WG battle is primarily lung related at the moment but the neuropathy was a several years' long prelude to the main event and, like others on this site, any change in the numbness of my feet now serves as a sign of whether the wegs is rumbling or if it is being held at bay. Good luck, Ron
    Thanks so much for the response, Ron. My neuropathy only started after the onset of the WG, starting first slightly in my right foot, then going from there to my left foot (up to my ankle)...then hands. You mentioned balance...mine is totally off. Must use a walker. I do have, however, a great physical therapist who gives me exercises which I hope will help. I don't know how long this has gone on with you or how you're feeling about it mentally. Sucks!!! Really brings me down, but I have discovered that taking the antidepressant, Celexa, helps tremendously. It's not a blood buildup type of antidepressant and doesn't seem to have side effects.
    Again.....thanks for letting me hear from you. Good luck to you, also. Mitch

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    Hi Mitch, welcome to the group. I don't have neuropathy but I have a boatload of other problems. Have confidence that your nerves will heal to some degree, if not fully. The body is an amazing thing.

    This thread has info for you: http://www.wegeners-granulomatosis.c...need-know.html including info about going to a major center. My recommendation--based on my own and others' experiences-- is to get to a major center as soon as you can, and have them oversee your care.

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    Welcome to the group, Mitch. I was first diagnosed a little more than a year ago, with severe foot problems (though not neuropathy) and subglottic stenosis. I have since had the stenosis repaired, and through the right drugs as well as a few months of PT, was able to regain most of the mobility with my foot and can walk comfortably, although I still have some pain and I don't have the flexibility in it that I did before. Everyone here is very helpful, so keep asking questions!

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