Hands and feet: My Churg Strauss diagnosis was... - Vasculitis UK

Vasculitis UK

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Hands and feet

jaydub profile image
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My Churg Strauss diagnosis was a year ago now. Hands and feet aren't too bad now, but I'd rather have my old ones back! They fitted so much better. I guess we all feel the same way.

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jaydub profile image
jaydub
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4 Replies
RareStap profile image
RareStap

Oh how I agree with you! I had my CSS attack in November, paralysis of both feet and left hand and no-one could tell me if they would ever get better. To my delight they are, if somewhat slowly and painfully, not that I am complaining. The feet still feel like lumps of lead and throw me on the ground at regular intervals but hey ho, I'm still here! My hand is doing really well, just started typing with both hands and it looks almost normal, it was the last to go so probably understandable! I was eventually told it could take two years or more for the nerves to recover, if ever - anyone out there who has got further than us, me and jaybub? So good to hear one isn't on one's own with this thing I had never heard of - its very hard for other people to understand it all.

Thank you for posting Jaybub, Sandra (in France)

Katie18 profile image
Katie18

hi Jaydub I too suffer from CSS and feel pretty much like you. My physio told me Id the worst footdrop he had ever seen and 2 consultants told me it was unlikely that my nerves would repair and that I would walk again.

My nerves did grow back and to my delight I was back at the gym walking almost normally with steep innersoles - which was amazing after the crutches and foot aids id had.

However about 2 months ago I collapsed after a nagging pain in my other foot got worse. It has felt like back to square one using crutches again and a mobility scooter. They have diagnosed a mortens neuroma in my good foot but with so many conflicting views on treatment. I am slowly able to walk again but the disease has deformed my feet making me prone to problems with nerves and bones.

So like you i am grateful i can walk again - but its no way near the same - and its hard getting health professionals and my friends and family to understand.

Katie18 profile image
Katie18

hi Jaydub I too suffer from CSS and feel pretty much like you. My physio told me Id the worst footdrop he had ever seen and 2 consultants told me it was unlikely that my nerves would repair and that I would walk again.

My nerves did grow back and to my delight I was back at the gym walking almost normally with steep innersoles - which was amazing after the crutches and foot aids id had.

However about 2 months ago I collapsed after a nagging pain in my other foot got worse. It has felt like back to square one using crutches again and a mobility scooter. They have diagnosed a mortens neuroma in my good foot but with so many conflicting views on treatment. I am slowly able to walk again but the disease has deformed my feet making me prone to problems with nerves and bones.

So like you i am grateful i can walk again - but its no way near the same - and its hard getting health professionals and my friends and family to understand.

AndrewT profile image
AndrewT

I can't add anything, to the above, except I loved 'old ones fitted better' comment. Hope that you remain ok, best wishes AndrewT

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