Hi has anyone had botox for the arm stiffening, we have an appointment soon, but it's like pulling hens teeth. Does it have to be done by a consultant, here in the uk, we are in East Sussex. Seems like a quick and easy fix, to relieve symptoms, but what a struggle to get it.
Cheers.
I hadn't heard about this but really interested as mum's left arm is badly affected by CBD and is increasingly clenched. It makes sense and given the lack of treatment this is worth looking at. I will ask the GP.
Hi yes it is used in the uk, mainly in MS patients, but you have to fight for it, I can see its value, my dad has CBD, and they use botox in the usa to relive the spasms. I had to jump through hoops to get it, it lasts only a few months, but it is better than the pain and discomfort.
Hi I know a gentleman has botox to help keep his eyes open and he has to have it done by the Neurologist and like you has problems getting it done at the appropriate intervals - this is in the North West of England.
Not much help to you I'm afraid. 
If the Botox can be injected without sedation then I’d say go for it. My husband went through a series of injections several years ago. He had to be knocked out because they were working on his lower spine. I don’t think that I would put him through it again because I fear that making him unconscious might have contributed to his brain disease. I can’t prove anything, but I have my suspicions. I hope that this makes sense.
Hi, my wife (2 yrs into official diag.) Is getting botox injections in the thigh for rigdity/pain. We are US (Omaha) and receiving treatment by the neurologist. Apparently it's a rather new regimen since it had to be cleared with the insurance co. It works well reducing pain.
Rick Westcott
I’m also scheduled for Botox in my right arm to relieve some of the stiffness and clenching. I had to wait 3 months before my doctor had room in his calendar. My doctor, MDS, will be doing it himself. I’m in the U.S. and have CBD. I’m hoping this helps, just like you, because it’s a little painful.
Signor,
We are in East Sussex. Ruth had Botox for dystonia in her right foot. It was done by Dr Nisbett at Hurstwood Park clinic in Haywards Heath (part of the Princess Royal hospital). The treatment was effective with no side affects. Dr. Nisbett is a fine and helpful doctor. So I highly recommend you have the treatment and do try and get a referral to that doctor.
Richard
My husband has CBD. We have been fighting for a long time to get Botox and eventually had it done at Orpington hospital three weeks ago. They have a specialist unit there. It has been really helpful as my husband’s hand was clenched so hard he had pressure sores on his fingers.
It has also made it much easier for the carers to move him to dress him etc.
It only lasts 6 months bit I think it is really worth it.
I raised this with mum's GP and she said that it would need to be requested by a specialist and as we still have another 4 months to wait (for an urgent referral the waiting list was more than six months - you'd never wait that long for cancer!) before we get the first available referral to neurology I've given up on that and am going to contact a local private neurological physiotherapy service.
STP for your area if in UK
Sister in the UK with CBD
PSP Research & Trials UK
Any PSP groups in Leicester UK?
