New here...

[Mitch]

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

[Hal]

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.

[Mitch]

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

[elephant]

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.

[purr6]

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

[Thakator]

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

[Mitch]

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

[Mitch]

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

[Sangye]

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.com/forum/general-wg-chat/986-what-newly-diagnosed-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.

[JanW]

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!

[Hal]

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.

[Hal]

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.

[coffeelover]

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

[drz]

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.

[Mitch]

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.

[Mitch]

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.

[renidrag]

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

[drz]

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.

[Sangye]

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.

[Mitch]

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

[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! :thumbsup:

[Mitch]

Thanks for the support, Sangye!!!!