Last reply 1 week ago
Treatments for Primary Progressive MS

Hi, I am new to shift ms and am wondering is there anyone who is on or knows anything about Rituximab? There are hardly any treatments for PPMS and my neurologist briefly mentioned this, but only in a letter after my consultation.
I can only walk very short distances with a stick before my legs start to seize up (the only way I can describe it) and I would dearly love to be able to walk better and quicker, or is that just a pipe dream! Have been trying to exercise more, but not having much of a difference at the moment! Getting extremely frustrated!

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stumbler
4 months ago

jeanettekent
4 months ago

@stumbler

Thanks for this, I’ve been having a read and am going to speak to my MS nurse about it. Going to be fitted with an FES device in a couple of weeks, so will see how that helps also.


msorb
1 week ago

@jeanettekent
HI i have Primary Progressive also. I was diagnosed in 2010. Back then there was nothing the medical world could offer so i went out into the dark new world of alternation medicines and what ever health craze i could find. However i wasn’t just going into any old thing i gave each thing some thought and researched it and tried out what i thought might work. There still isnt anything the medical world can/want to offer on the NHS. would like to try Rituximab not sure where to go.

with no official treatments I feel obliged too try whatever I think might work… and let my neurologists know what i was doing and considering. i feel its quite liberating to discuss these things with the medical world because they cant offer you an alternative.

i do the following:
LDN removed the uncomfortable tingling.
Vitamin D… why not the sunshine vitamin!
Vitamin B7 300mg a day- the early trials have exciting results
C60 in olive oil- has lowered my fatigue.
i have started taking cannabis CDB/THC oil drops and that helps overcome stiff muscles in the morning and whenever.
Plus diet and exercise … healthiest I’ve ever been I’m just really ill! i am doing a vegan low fat diet at the moment but i have also done Wahls Paleo diet. both helped me lose loads of weight without effort and be healthy.
It’s not ‘Bee Sting’ therapy or some kind of occult practice…there is a drop of science in these substances. the same question… How far are you willing to try things out? I did looked into stem cell and CCSVI (the vains in the neck surgery thing) and didn’t go for them…

i use FES on both legs and it has definitely kept me on my feet… its a buzz!
All my neurologists have been very supportive.


vixen
1 week ago

Hi @jeanettekent, welcome to Shift. You probably know that Ocrevus will hopefully be approved for PPMS in the U.K. at some point, so continue to hope. There are lots of medications in the pipeline undergoing trials so this is a good time for research and development. My sister has PPMS and successfully uses FES although she opted to pay privately to avoid referral waiting times. One piece of advice would be to do your research through official sites rather than google, which can cause unnecessary alarm! Good luck, lots of support here x

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