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[hels991 year ago]

I discussed it with a neurophysiotherapist that my MS nurse referred me to. He suggested increasing exercise – more walking in the first place. I now do yoga and have increased the walking to (gentle) running. It has helped a lot but certainly isn’t a cure.

[mmhhpp1 year ago]

I get on with it ….. i found vitamin B12 helps a bit. It makes it a bit easier to stand up from the sofa. Unfortunately i have not seen anything for fatigue…. xx

[doubleo7hud1 year ago]

Sleep is good for that @mmhhpp

[sandwich1 year ago]

Sounds like he needs to familiarise himself with the NICE guidelines for managing ms

https://www.nice.org.uk/guidance/CG186/chapter/1-Recommendations#ms-symptom-management-and-rehabilitation-2
Perhaps email him this and try again? Do you have a MS Nurse? might be worth going down that route if you do.

[scramblelina1 year ago]

@lisajane your doctor sounds like a bit of an arse. I personally would probably look at changing to a more sympathetic doctor.

He’s also wrong, there is a lot of evidence out there that people with MS benefit from both vit d and b12 supplementation. I take 10,000 vit d daily (get a years supply from amazon for less than £20) and I have b12 injections every 3 months at my GP surgery. As someone who was constantly tired and now am not, I would highly recommend it.

[lucyh1 year ago]

Hi, some people swear by hyperbaric oxygen treatment, but you have to do the research, as it is not approved by neurologists…the jury is out on this form of treatment (available at some MS Centres around UK). Take care, xx

[heids1 year ago]

@lisajane
Not advice but I suffer with this too. When I had my last appointment with the MS nurse (not my usual one) he suggested Amantadine and wrote a letter asking my GP to talk to me about it. My GP was furious because this is black-listed in the county where I live…my usual MS nurse also said that it shouldn’t have been suggested! When I asked her if there was anything I could take she told me to have another look through the MS Trust booklet on fatigue and it was all about coping strategies.
In an ideal world the strategies are great but in reality not always doable!!!
I do exercise…not as much recently but I’m finding be fatigued and wanting to sleep during the day but not being able to sleep at night is really having an impact on my concentration levels and is affecting my work. I might talk to the Dr about the Vit D & B12.
Take care
Heids x

[stumbler1 year ago]

@heids , you may want to refer your Doctor to these NICE guidelines.

https://www.nice.org.uk/guidance/cg186/chapter/1-recommendations

Paragraph 1.5.4 is interesting, reading:-

“Offer amantadine[4] to treat fatigue in people with MS.”

Although there is an additional comment to this reading :-

“At the time of publication (October 2014), amantadine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council’s Good practice in prescribing medicines – guidance for doctors for further information.”

which suggests that there may be some “wriggle room” on any decision to prescribe!

[heids1 year ago]

@stumbler, thank you for your advice and I will definitely have a look at the information. It’s a county decision, not my GP’s and I guess he is just following protocol…as was my usual MS nurse. She did say there was only a 30% success rate which they both felt was pretty low! I guess when the carrot had been dangled there was a bit of hope as it can be pretty frustrating!
Thank you again, take care.
Heidis x

[uptoeleven1 year ago]

Doctor or neurologist?

I’m on 5,000 iu Vit D3 / day (amongst other stuff) as prescribed by my GP as recommended by my neurologist – there is evidence it works and my Vit D3 levels were (and are) very low.

Have yours checked. If they’re low, you can get Vit D.

Demand help for fatigue. If they try to fob you off… I wouldn’t recommend this but I did tell them my job was under threat. When that didn’t work (my employer didn’t care about what the occupational therapist said) I threatened the neuro that I could use recreational drugs to deal with the effects of the fatigue. It was probably a very stupid thing to say / do but it had the desired effect – I got prescribed medication to help with the fatigue. I’m on modafinil, it doesn’t always work, I have to be very careful with it (2 days off per week to stop me from becoming habituated).

And to be honest – it worked ok-ish but when I went on the Vit D3 that was when the real improvements came. So even though anti-fatigue meds exist, they sometimes aren’t as good as making sure your body has the stuff in it that it actually needs…