Your help is needed - Neuropathy Study - Vasculitis UK

Vasculitis UK

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Your help is needed - Neuropathy Study

John_Mills profile image
John_MillsVolunteer
14 Replies

Your help is needed again .... Neurologist Dr Robert Hadden of Kings College Hospital, London has teamed with Professor Raashid Luqmani of Oxford to launch an in depth study of the incidence and severity of neuropaththy in vasculitis. They need your help please vasculitis.org.uk/news/rese...? vasculitis.org.uk/news/rese...

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John_Mills profile image
John_Mills
Volunteer
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14 Replies
Hoofprints profile image
Hoofprints

Thank you for posting this. I have completed it. It's not too bad in terms of length. Best wishes all

Galaxy2 profile image
Galaxy2

All done, very relevant questions I thought

Chipper03 profile image
Chipper03

A good survey, didn’t take very long. It’s great there’s interest in this area which affects many of us.

Shell07 profile image
Shell07

Done

Wrigglymonkey profile image
Wrigglymonkey

I am wlling to take part. My Vasculitis treatment was stopped when it was realised that it had allowed PML to raise itself so neuropathy is especially relevant. Do you need any address other than my email?

Keith Bowman

Tbrz profile image
Tbrz

Done. What a great questionnaire, it gave insight to issues I have as well as shedding light on this problem.

John_Mills profile image
John_MillsVolunteer

It’s just a survey if you follow the link on the post , thank you

Lms53 profile image
Lms53

Please send the link again as it’s not working on my iPad

Thanks

John_Mills profile image
John_MillsVolunteer in reply toLms53

vasculitis.org.uk/news/rese...

Paprika60 profile image
Paprika60

A very good and thorough survey. I have also learned a few things from it. So far, I haven't had neuropathy addressed at all by my Vasculitis doctor. I hope you are also getting the surveys done with Sjogren group as they also suffer from neuropathy. Thank you very much!

gibson100 profile image
gibson100

Over the past ten years that I have been managing MPA neuropathy has been the worst physical aspect of the disease.VERY uncomfortable all the time.So I It is good to see much needed research.

Grammy80 profile image
Grammy80

I'm in the states...and wonder if this rules me out. I do have peripheral neuropathy with my lower legs and feet being the most noticeably affected. It feels like I'm wearing two heavy woolen socks~! There are other health conditions but I have never been bothered by it as much as in the last 4-6 months. I was diagnosed with GCA and partial sight loss in August of 2019.

John_Mills profile image
John_MillsVolunteer in reply toGrammy80

You can complete the survey

Grammy80 profile image
Grammy80 in reply toJohn_Mills

Thank you, I will.

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