I was diagnosed with WG in January and at the same time had drop foot in both feet , still unable to walk without aids, and cannot stand

[archie2]

unaided, I wondered if anyone else has had the same problem.

[limpingwulf]

Hi Archie

I had the same problem early 2011. The healing process has been slow but is definitely happening. Keep exercising to avoid muscle loss and stay positive.

[Hidden]

I had this in just one foot but whilst I still get cramps and peripheral neuropathy it eventually improved. I suspect the problem was caused by having to sleep on my left side only as this appears to have damaged my peroneal nerve in my left leg. Limpingwulf's suggestion is a good one and maybe consider Bowen therapy or similar?

Healthy wishes.

[LynneJ Vasculitis UK Volunteer]

I have MPA. Same problem. In left hand as well. Patience is the word. The more you use things the more they come back but very, very slowly.

After 2 1/2 years of gradual improvement I have just now had a burning sensation in part of my hand and can feel it normally!!!! Only in one small part, but I am so pleased as people have said 18 months and I thought that would be the best it would get.

So I believe it can keep improving.

Things will get better and if not back to normal at least liveable with.

Good Luck.

[Tony-LakeDistrict]

I had the same problem, caused I was told by prednisolone

For me as the doses came down, one might say, the foot came up. I remember it being most painful, they I did find a hot water bottle helped

Good luck

[Wellsie]

Patience is definitely the key. Although i don't have MPA, my PAN also have a big impact on peripheral nerves, and I have conduction blocks in 5 inidividual nerves.

Assuming the combination of pred/cyclops puts your disease firmly into remission, then the blood vessel that supplies the blood to the peripheral nerves may heal. This stops the ischaemia of the nerve (probably peroneal in your case). The nerve axons (the bits that provide motor function or control muscular movement) will then repair themselves, and grow from the point where they died back (the stub of the nerve is a bit lick an onion bulb). Where a full conduction block exists, my neurologist tells me that the new nerve strands grow at about 1-3mm per month, so for example a conduction block mid-limb can take 18-24 months to heal.

Where the nerve damage is severe, recovery may never be complete. I have significant improvement in 2 of my nerves, but 3 were damaged beyond repair. I have had some marginal improvement in sensation and touch, but the motor function of the nerves is still shot. My nerve failure started 3 years ago, it took this period of time for me to get a proper diagnosis and treatment, thus i speak from experience, and over 30 neurology tests and appointments.

And "dead" nerves still cause pain. Never figured that one out myself.

[archie2]

Many thanks for your replies, I found them very helpful,it has given me some hope.

Good luck and stay well.