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Helpful?

Apologies for this post - there are a lot of knowledgeable well meaning people connected with m.s. -

but in my experience none have been of any real help - most of the ‘advice’ given I could have sorted out for myself e.g. not to overdo it - exercise in moderation - most suitable exercises - any benefits I could apply for I sorted out myself - neuros send me for an mri and then talk of lesions and ‘types’ of m.s. (not much point in that.)

my question is, apart from possibly prescribing drugs - very specifically how have the ‘professionals’ helped you ?

I don’t usually read posts that are anonymous but I stopped when I read the opening lines,“apologising” for the post.

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Why have you posted anonymous, just make up a name.

Agree, all there professionals, take a massive salary and give little back apart from telling you to carry on as best you can.

I pay privately for a physio to visit my home twice a week to stretch my legs and core exercise which really helps

Also went on internet to search for stem cells, poor response from uk

Fantastic response from Artemis hospital in Delhi.

Filled out form and they offered me a place on 13th December 20

My wife refused to come with me due to covid virus

Living in hope

Bertie

Forgot to mention $30,000 (£25,000) bargain for a cure.

Bertie

What about all the people living better lives than they would without DMDs? There are thousands of them.

I havent had any because it took 22 years to diagnose me.

Boudsx

The only nuero who really helped me was the one who did diagnose me!

I can definitely relate to these comments. After about 33 years of MS I reckon I probably know best what works for me. I never got given any DMDs either, and I’ve read that having had them could have slowed down the slide into SPMS, but life is always “if only”, isn’t it! I’ve managed through it all with basically just treating the symptoms as they affect me, and having a supportive GP, who understands how much my Christian faith has helped me throughout this.

Stay strong everyone and be your own advocate for as long as you can.

What doesn’t help is on the days you feel worst, you’ll always find someone tells you how well you look! That might be, but you’re screaming inside really! And looking good of course can be down to the wonder of makeup Lol.

I’m the OP - not sure why I went ‘anon!’

Yes, we need the medics to prescribe DMD’s - if we’re on them.

But the reality is we’re basically paddling our own canoes.

That’s quite an ‘apart from’, Anonymous. Or that has been my experience, after 10 years on Avonex and another 10 (and counting) on Tysabri.

Alison

Bertie not sure your being serious here. really no chance i would go to India for a curry never mind a cure for MS.

there is no cure. its like the common cold. we spend a lot of stuff trying to make us feel better when all we have to do is stop trying and just live our lives the best we can and have some FUN. yep fun. too much serious stuff going on.

xxxx

when someone tells me wow you look well, i say why shouldnt i? I am not ill just neurologically challenged. lol.

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Oh I like that “neurologically challenged” must remember that one!! Lol

Agree with you there - a) no way I’d go to India for any treatment and b) as you say there is no cure as yet.
Save the money to spend on enjoying something with your wife!

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I agree with Alison, without my neuro I wouldn’t have had DMDs for the last 15 years or so. Reduction in relapses, reduction in disability, symptom management… I am grateful to them for that at least.

Interesting question, it sounds like you are unimpressed by “your” team. I felt similar a long time ago, then I spoke with a friend who said “if you are not happy with them, change them” I found an MS nurse who listened and facilitated things like Physio and an energy management course. I finally found a neurologist who would listen and I have confidence in, who has put me forward to a couple of drug trials and an NHS backed mindfulness trial. None of these have fixed me but I feel supported and confident that they are looking out for me.

I hope you get some better support soon

Mick

My lot are about as much use as a chocolate fireguard, my neuro likes talking about himself too much…my nurse isn’t too bad, but still not great and I agree, we know more than them, they don’t live with it, which I have pointed out, didn’t go down to well…but hey,tuff.

Jean x

I acknowledged in my OP that neuros prescribe drugs.

Once I’d really studied what support I’d had in the past from various agencies I realised that I hadn’t been given any advice that I couldn’t have worked out for myself.

Being told not to get overtired - to get someone to help with the gardening - to look at possible adaptions to be made at work - to do stretching exercises etc.

All things I can do for myself.

So I came to the conclusion that if you look beyond the smoke and mirrors many of us are managing as best we can in total isolation.

I’m not criticising m.s. nurses physios etc - all good well-intentioned people - but what exactly do they do for us?

Is the reality of m.s. for most of us that we are basically on our own ?

You don’t know what you’re missing, the food in India (in my experience) has been amazing. I’d go to India just for the food. In fact that was more or less what I did last time I went. Oh ‘Railway’ chicken curry, stunning, super hot fish dishes, 3 kinds of tikka, the naan (so different to the U.K. version), stunning, gorgeous food.

And there’s no reason not to have hospital treatment in India, there are pockets of extreme deprivation, isolated villages where the medical care is negligible, but in the cities the medical care is great.

I agree there’s no ‘cure’ for MS, but certainly many people have been helped by stem cell treatment and other therapies not available in the U.K., certainly not on the NHS.

Sue

The best treatment I’ve ever experienced has been from my rehabilitation neurology specialist. He’s amazing, understands drugs including the best ways to take them (I’m not talking about DMTs here), referrals for physio, wheelchair services, orthotics, bone density scans. He is also the lead doctor for the neurological rehabilitation unit, where people are in patients for rehab from all kinds of neurological disorders and events. Many people with strokes, brain haemorrhages, heart attacks, cerebral palsy and MS. The only thing he can’t do is prescribe DMDs, but that’s no problem for me anymore.

I’ve been treated in the rehab unit 3 times, once after a severe relapse (I was there for about 6 or 7 weeks that time), then for some rehab after my colostomy, and again after breaking my femur last November.

I feel very lucky to have such an amazing doctor, and access to the small rehab unit when I’ve needed it.

I do agree though, many of our specialist doctors and nurses are a bit pointless. In fact my MS nurse went so far last time I spoke to her as to ask me, ‘what do you think I can help you with?’ Nothing it turned out. Equally, now I’m no longer a DMD candidate, I decided I’d stop seeing an MS specialist neuro, just stick with my rehab doctor.

In saying this though, there are many people, especially recently diagnosed with RR, who are seen by some wonderful neurologists who do an excellent job of communicating with people, getting them the best therapies (not just disease modifying drugs) and treating them. Equally there are some great MS nurses who do a fabulous job for their patients. I’m still envious of anyone who gets to see the wonderful Professor Giovannoni at Barts Hospital (he was my neurologist for a few years before I moved out of London and even for a couple of years after that).

Sue

Hey Bertie,

Hope you don’t get Deli Belly! Await your return & report please. I note they only mention the few minimal success stories in reviews… of course. I SPMS am wheelchair bound can only stand to transfer. By having lots of private physio managed to walk with a Zimmer Frame approx 12m! Then Covid-19 lockdown & I reverted back to just transferring again! So trying it all again. Use it or loose it!

I may go the same route.

Best of luck & Happy Christmas!

Anne…on

I read a price of $60,000 for that ‘cure’. Doesn’t help repair lesions of course so both of those mean it’s no-no for me still looking for aremylination option…