Mags

Hello everyone,
I don’t have WG but my husband does. He was first diagnosed in 2006 after the usual torrid time and, after 2 tears of treatment achieved a drug free remission until April this year. This time the WG was recognised very quickly and he receives his second Rituximab this week.
The first time his lungs, ears and the peripheral nerves in his legs were affected, but this time it is his muscles and balance so he his currently hardly able to walk meaning we have to use a wheelchair when we go out. I remember how long everything took to improve the last time but it seems harder this time although we are both trying to be positive.
Our chest consultant is great and has involved neurology and rheumatology: they are all very positive about things improving but I wonder if anyone else out there has any experience of WG affecting walking in this way-and has any advice for us?
All the best to you all,
Mags

G'day Mags
I guess if it's balance then his ears are perhaps affected again? Is an ENT involved and do any of the Docs have much experience with WG...assuming they're not the same ones as last time. Glad they got onto it quickly too and Rituximab is awesome. Haven't had any WG-related balance issues myself. Perhaps someone else can chime in on that one.

Cheers
Andrew

Hi Andrew,
Ent symptoms have largely been non existent this time. The issue seems to be that the Vasculitis has affected the nerves to the muscles in the legs meaning the right impulses aren’t getting through. The neurologist is fairly positive it will come back ‘ in time’.
Our main doc is the one who’s been with us since 2006 and he has quite a lot of experience with WG. Pretty sure he would have referred/ will refer us to ENT if there are any concerns.
Will see what happens after the next Rituximab infusion this week.
All the best

This is all very interesting, as I have had balance issues, including episodes of vertigo, in the last several years, since being dx'ed in 2011. Sometimes it is just not being able to walk straight, with no actual vertigo, but it feels like vertigo without the spinning sensation. I'd been focusing on ear damage from WG being the primary cause, but now that you mention the weakness in the legs, I do have neuropathy in my feet, mainly the toes (WG related, I assume), and also advanced bunions (hereditary), which undoubtedly affect the balance. And my eyes are part of the equation, since I have double vision, probably related to erosion in the sinus bones that form the floor of the eye sockets (an MRI showed that). I've gotten minimal help from an ENT and an opthalmologist, but perhaps need to consult a neurologist as well. Not really helpful to your husband's situation, which just gets me thinking, and is another example of the huge variety of ways in which WG affects people. I'll be following this thread to see what else comes up. Thanks for posting, and welcome to the forum!

Anne

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I don’t know if this is worthwhile, but it’s from a good source and germain to this thread...

https://health.clevelandclinic.org/b...ZqrQo6whQBvZkA

Pete, that seems very worthwhile to me, for one. I know about the ear crystals, and think I may have that problem along with other types of vertigo such as Meniere's disease (my ENT's suggestion). I like the way it is explained here, and there is a wealth of other links incorporated which may offer even more help. And yes, the Cleveland clinic is an excellent source.

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Hi Annekat,
My husband also has residual neuropathy in both lower legs since his first WG episode in 2006. He had some postural treatment for BPPV a couple of years ago but feels that this difficulty in walking is different to the episodes of vertigo he had back then. Interesting how this disease affects people differently but also how the same person is sometimes affected differently on separate occasions.
Thanks to everyone for your advice and will keep you all posted with developments.

Yes, I can empathize.

Wegs took my hearing and balance in right ear. Left ear was already damage from years of infections and several operations including a mastoidectomy. So my hearing and balance was already impaired before Wegs. I had neuropathy for years too from decades of diabetes. So learning learning to walk again was real challenge after I woke up from a couple weeks of intubation.

My neuropathy is progressive because of decades of diabetes but I have learned I can help slow down the deterioration in my balance by exercise with Tai Chi for balance classes and other exercises. Ball room dancing is also great for balance if you can find classes and good partner to help support you. Line dancing would be even better but I broke my ankle walking down the hall so figure that might be beyond my abilities and maybe not safe for me.

It took awhile but I finally graduated from being bed ridden through the steps of wheel chair, walker, cane etc to being able to wobble unassisted. I can't walk a straight line or balance on one foot much or at all some times, but I can wobble along at about 2 mph for a couple kilometers if i take a break or two and will strive to keep doing so as long as I can.

Vestibular rehab and other rehab for balance has been very helpful for me too. it takes awhile to build up the strength needed for balance so you can remain upright. And to also get up after you fall down.