I have ppms which is obviously difficult to cope with but I exercise have a good diet etc .I have bilateral foot drop have AFO and FES device but my Achilles tendons are tight and dorsiflexion movement limited .I have requested Botox in the gastroc ( abbreviation) muscle and neurologist said ok I will ask spacticity clinic.So far nothing despite me looking this up as a viable treatment option,but why should I need to come up with potential treatment options? I have no medical training .Sick of fighting for ppms as we are the forgotten in terms of any ms treatment and why should anyone with a complex neurological condition not expect the expert consultant to actually suggest and support treatments that might help life become a bit more liveable.and keep us healthier for longer because it’s actually cheaper for the NHS .Who will fight for us ? No neurologist has actually said to me I will do this for you and make sure it happens.I attend a centre supposed to be one of the best but all I have found is negatively in neurologistsand no innovation We are doomed being classed with ppms .The modern way of thinking is just class us as all having ms and thus we all have treatment options..how do others feel?
@viv.ward61 you are correct in what you say about treating all ms sufferers the same. Yes, there’s some people for the want of a better word..”sicker” than others. And yet, we’ve all got ms in some shape or form, so should be treated the same. The NHS like many other businesses and institutions want to do it all as cheaply as possible. It’s not really right though. We’re all human.. all have ms and all ought to be treated fairly and all treated the same, too. I have another illness.. disease.. whatever you want to call it. Cancer! When I had an operation last year I was told any side effects could be treated easily. That may or may not be the case. Doesn’t mean that there going to help you though. It took me 16 months..16 long months of an uphill battle to get them to help with the side effects. My GP didn’t want to know. Two hospitals didn’t want to know. In the end I contacted my MP and he managed to get one of the hospitals to write a prescription for me. I shouldn’t have had to go to him if my GP or the hospital that performed the operation had, had any empathy at all. I’m not saying you should have to do that. But, you might want too. Wishing you well and don’t give up on attempting to get help from your GP and your neurologist either. You deserve to be treated as equally as all of us.
You must have had a very very unfortunate experience with the Oncology team ! My wife has been going through cancer treatments for the last 7 months and gets regular phone calls and appointments to monitor progress and side effects. ( phone call a coupl of days ago, appointment next week ) and is more or less instructed to report any side effects immediately. These arrangements will continue more or less indefinitely- at least for the next 4 years.
In the immediate context , have you called the neurologist Secretary to ask for news on the spasticity treat. Also, do you have an MS Nurse - probably better talking to him/ her!
I haven’t heard from my neurologist in ages and very rarely hear from him ( think that is pretty much the normal ). like most of us I have a Nurse as first point of contact. Do you happen to know if people with PPMS are supposed to have a Nurse?
@Hank_Dogs I think that the problem I had was the operation wasn’t at my local hospital.. they don’t do that type of operation so I had to go further afield. Then they said that they wouldn’t write a prescription because it was done elsewhere and the hospital I had the operation at said, because I don’t live in their “catchment area” they wouldn’t write one either and my GP just kept saying it’s up to the hospital! It was just politics and all about their own budgets as far as I could see. It’s rubbish at the end of the day as it all comes out of the NHS budget wherever we actually get the treatment and medications from. Anyway, that’s what our local MP is for. They’ll try to help all their constituents, no matter their choice of party allegiance. Shouldn’t have had to go that way through. Just needed one Dr to write out the prescription. Wishing your wife well with her cancer treatment and hopefully she’ll be treated successfully, with the best outcome possible.
Many thanks. This round of treatment should be over before Christmas after which she will be monitored and checked regularly. I hope the same for you too.
Problems with getting different hospitals and GP surgeries to do things are very probably to do with budgets. I get blood tests done every 6 months at the hospital where I was diagnosed. I also get a slightly different blood test at my GPs - getting the two to coordinate and agree that the blood test at the GPs could also include the things that the hospital wants to check , or vice versa seems to raise major issues!
I am sorry that you had to go through all that on top of dealing with the health issues.