Last reply 1 year ago
Joining Shift MS

I have just joined Shift MS and just want to say thank you to you all as I have read your posts and can identify with a lot of your thoughts and feelings, I now have secondary progressive MS and find myself frustrated when going to my consultant to be told there is nothing they can do at the moment with this type of MS.

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stumbler
1 year ago

@burgme , Secondary Progressive MS (SPMS) is frustrating, but it is what it is, so we have to try and accept these frustrations and move forwards.

Life can be trying for us, but it could always be worse. We should be grateful for small mercies.

I am sorry to hear you have progressed to secondary however there are a couple things with considering. I will post some links a bit later but I do believe something like the oms program (overcomingms.org) offers hope and at least the very real possibility of slowing progrsssion. Also worth considering high dose biotin and ldn. Again probably not a miracle but I wouldn’t give up and explore some options. There is much to be hopeful for and there are a few drugs in the pipeline right now that are worth exploring soon.


ellenmay
1 year ago

I agree with your thanks extended to shift ms site.
I too joined this site and read lots of posts and felt relieved that there were others who understood how it feels to be an mser!
Thanks to all who share their thoughts on here,give advice or just keep making us smile 😊


chicolini910
1 year ago

Let’s keep the “should”s out of discussion, all right, @stumbler?

Was on my mobile phone so couldnt post the links but here they are below. However, I think giving some dietary system a serious whirl would be worth a shot. OMS has things like very low saturated fat, high omega 3 etc. Dont simply accept there is nothing you can do to effect your outcome. At the very least a good diet will improve your mood and overall well being. ACTRIMS coming up this week has a lot of topic on diet. It seems like research is starting to think seriously about this, but its hard stuff to test scientifically. However, that doesnt mean that we cant make good educated guesses on some things to try that only have upside.

Here is some on high dose biotin. I think you would need a compounding pharmarcy to get a concentration that high, but you can do more research and see if its worth considering. I have no personal experience with it, just passing some articles I have been following and wondering about considering even for RRMS.

https://multiplesclerosisnewstoday.com/blog/2016/08/29/riding-the-high-dose-biotin-train-for-progressive-ms

Here is one on LDN:
http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone


mmhhpp
1 year ago

Hi all, i believe i am going into spms too … everyday is so difficult and so upsetting…. feeling low at the moment…..thanks all for your posts…take care xxx


makkymee
1 year ago

Hi and welcome @burgme,
I spied on forums before taking the plunge and signing up so can definitely relate.

I agree with @californiadreamin – I once watched a video presentation of a woman diagnosed with MS who spoke of the benefits of changing diet saying your plate should be full of colour. I do believe it’s the way forward as although I fall of the wagon often, chocolate is my weakness, majority of the time I’m eating a plant based diet that actually makes me feel better.

I know it’s hard but take small steps to see if they help

Makky

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