Getting on my bloody nerves (literally)

[Wellsie]

Went to see the physio today; was told I have very weak legs and hips, and was shown today practically how bad it is getting. No more denial, it's not good.

Given that it was only 10 weeks or so ago that I walked 31 miles in a day, is it possible that such rapid weakening is being caused by axonal motor damage to muscles? I had my last NVC and EMG tests 8 weeks ago that showed the fast onset of sensory nerve loss, but limited motor damage. I am familiar with joint pain being part of vasculitis, but wondered if others had experienced significant weakening as part of disease flare, and if so, did it right itself quickly? Next Tuesday is my third chemo of the current cyclophosphamide season, so I was hoping to have seen some improvement by now. But I feel worse and I am now getting very worried about losing my mobililty...

[John_Mills Volunteer]

Martyn, I'm sending you a PM about your problem.

[hamble99b Volunteer]

I go through periods of extreme weakness.

for 3 days last week I could barely walk or hold shoes on my feet;

my hands were almost useless but extremely painful;

a few weeks ago, I couldn't walk 6 steps from my car to my front door without taking very slow, tiny, carefully placed steps - frightening and exhausting.