This is all new, scary, and very surreal.

[Urbanator]

Thank you all for your notes of support!! My moms Drs are really fantastic. I do feel blessed to have them. We are exclusively working with specialists. But I feel like the disease is not cooperating. The nerve test came back with "significant damage". Which means that the disease is progressing. But somehow no kidney results yet!
We've been given two options right now, biopsy the nerve and see just how bad damage is and confirm the diagnosis OR just go ahead and blast it with Rituxan. I'm leaning toward just blasting it before the damage progresses further in the nerves. I'm so bummed about this news. We were hoping that the nerves could get better. I haven't even told my mum that they will likely stay that way. I don't want her to get depressed about it.

Has anyone had something similar with the leg nerves?? This is a crazy disease!

Thanks everyone!


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[Dirty Don]

I had neuropathy in both legs from the shins to the tips of my toes. Most of the numbeness in the right leg/foot is gone, but the left, altho diminished, has retained some of the neuropathy making me a bit more prone to stumbling than I usually am! I did a lot of massaging of both feet and it seemed to help. Best to you both.

[Debbie C]

This may sound silly but since Don said massaging helped ,I wonder if getting one of those foot massenging spas and put Epson salts in it may help,since there is pressure points in the feet that help different parts of the body ???????????

[annekat]

This may sound silly but since Don said massaging helped ,I wonder if getting one of those foot massenging spas and put Epson salts in it may help,since there is pressure points in the feet that help different parts of the body ???????????

I think it sounds great, Debra. Anything that promotes circulation in the feet should help, as well as the pressure points. I have seen many of those foot spas at the Goodwill.... not sure why I didn't buy one, waiting for the most perfect and least used one, I guess.

[Dirty Don]

I did mine by hand. Wife has a foot spa, but the ones that would work most efficiently would be the 'robotic' type where the feet are squeezed back & forth. Anne is right in that it's the circulation of blood that helped. Most nerve damage, unless caught early enough (within 6 mos.) tends to stay. Nerves are extremely slow at regeneration, if they do at all. Once past the 6 mos. period, approximately, most of the damage remains. Have seen it with many football injuries. I'd go get a foot massage by a pro if I didn't want to do it myself. Have fun!

[annekat]

It's nice that we are easily able to massage our own feet, if no one else is there to do it. ideally, I would go for the hot foot bath with epsom salts first, to soften and loosen everything up and maybe get rid of some of the dead skin. Then go for the massage action with the hands! Yep, I still have some of the neuropathy, though not as bad as some, I'm sure. I also get the hand and foot cramping, and I'm not sure whether that is related....

[Urbanator]

Awesome suggestions for the neuropathy! And great gift ideas for Mother's Day!! I hope we can reverse some of the damage. I'm afraid she won't be able to return to work as a Hilo driver.
I've got an apt with the Drs today to discuss treatment. We're going to start Rituxan. Here comes the next hurtle. I'm so great full for all the suggestions!!! You have no idea!!


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[annekat]

I think there are drugs people take for neuropathy, too. I just don't know or remember what they are. Anyone?

[MikeG-2012]

I think there are drugs people take for neuropathy, too. I just don't know or remember what they are. Anyone?

gabapentin/Neuontin
Lyrica

and others that I can't remember...

[kaysee]

I have issues with neuropathy in my left leg probably as a result of WG. I did physical therapy for about 12 weeks and was finally able to walk with the help of a cane. My dr then prescribed a neuropathy cream that had the following ingredients: gabapentin, flurbiprofen, cyclobenzaprine, lidocaine. The pharmacy had to make it for me and it expires in a month. It really helped. After about 4 days applying it 4 times a day I was walking pretty well without pain in the leg. Still had some pain from fluid in the hip joint. Well I went to renew the Rx today - and wouldn't you know it - the insurance will no longer cover any of those ingredients. The cost of a months supply was going to be $440. No way I can pay that - so I guess it is back to the dr.