After dx 3 years ago (PPMS) I am still totally confused about diets, supps, therapies etc. Having taken lots of vitamin supps, tried various diets and therapies including HBOT and LDN nothing seems to change. The web lists plenty of extreme treatments, bee stings and snake venom etc but I think us sufferers agree that most of it is bs. I must admit though I feel that I wouldn’t know if anything was working or not. How do you tell? Can anyone suggest anything that they feel works for them please?
Some supplements/diets/therapies /exercise will make anyone feel better. We need to keep our minds and bodies as well as possible as there is no other ‘cures’. My brother used to be a deep sea diver [professional] he used a HBO chamber many times.
l asked him if he thought it would help my MS - and he said that it would make anyone feel better for a while. So not a treatment -more a feel-good therapy. l live too far away from one to try.
Vitamin b12 and vitamin d3 deficiency MS - always looking these up - as this is important to us. Malabsorbtion being a problem with MS.
LDN - now this has made a big difference to me. l did stop taking it for a while. And l did not realise how better l am taking it.
Do not take DMD’s. l have had SPMS - for too long apparently. [31yrs]
Steroids. Now did have a course of injections about 25 yrs ago. And wished l hadn’t.
With LDN - although certainly not a cure - it does make you feel more positive and more able to cope with ms symptoms. And my SPMS has not progressed since starting on it. 6yrs ago.
I can’t offer any confident advice really as we’re all different but I can tell you what i feel is right for me (but do I know for sure, no!) I’m sure other will tell you what works for them too
D3 (recommended but not proven!) I take 1,000 - 2,000 units a day, some people take higher but you need it monitored
B complex - B12 can be strongly related to fatigue so just a good supplement
Cranberry supplement - Good for bladder/kidneys, I’m awaiting D.mannose in the post as this is supposed to be very good
LDN - only 2.5 - 3ml, when I got to 4.5 it was too much and some symotoms worsened a bit
Amitriptyline - a good nights sleep is my best coping mechanism!
Diet - generally ‘healthy’ and avoiding gluten, not completely GF now but mostly. I would recommend considering GF to anyone that suffers with fatigue. I went GF for other reasons long before MS and the first thing that changed very quicklu was my sleeping patterns. If I eat a pizza now I know full well I will feel hungover in the morning! It is hard to digest, simple
I am currently weaning myself off Baclofen and hope with a good stretch routine, I will cope * crosses fingers*
Unless I have a lottery win, I won’t be trying fampyra as it’s just too expensive!
Well, that’s where I’m at anyway. It’s not perfect and I’m not getting better but then again, apart from a few dodgy moments, I’m coping!
Sonia, All this week - has been www.glutensummit - on-line - very interesting. Forwarded by ldntrust. l found some of the ‘facts’ quite disturbing. Apparently, its gluten that stops us from absorbing Vit d3.
l keep an open mind on everything - as l feel not enough has been done to help us. Certainly a grain free diet suits me - much better behaved digestive system/bowels - lBS.
I took very high vitamin D supplements and managed to get my blood levels to 400 nmol/L (recomended level is nearer 100). My neuro told me you need to be up above 700 nmol/L to get bad effects. I stopped taking the vitamin D for a while anyway. But I carried on getting worse at the same rate when my levels were really high and when they came down again. Same with the LDN and with the Best Odds Diet. The Wahl diet had really bad effects on my bladder. I have tried a few other alternative therapies as well - I have never seen any benefit from any of them. I’m putting this on here because people are so quick to describe things they think have made this big difference to their disease but not half so quick to talk about the things they tried which were a complete waste of time and/or money.
My view on what you should do: eat healthily; try and do any exercise you can; you might try and get on one of the big name, expensive drugs which (on average) slow down deterioration by two thirds (but I’m on Tysabri and I don’t think it is doing as much as that for me). Sorry to rain on the parade.
I agree with Sewingchick though for me eating healthily is more an aspiration than a reality.
If Sewingchick is on Tysabri then I would assume that she is RRMS. I am SPMS (I was dx with SPMS) and there is no ‘approved’ medication to treat the MS itself. There is only medication for symptom relief…
I do think it can help psychologically to be ‘doing something’ but there is no proven way of dealing with this. Different things help different people. I find my energy levels are higher after HBOT, it doesn’t help my MS but it does help me to feel ‘better’ after I have had it. Some people find LDN helps them, but not everyone.
I do hope you find something that helps you. However going back to Sewingchick’s advice it won’t hurt to eat helathily and get as much exercise as you can.
i can never tell if something is doing me any good but occasionally i give up something eg LDN and then i realise that it was doing me good after all.
HBOT was good for my bladder but i didnt notice any other benefits. then again if i miss a couple of months i can tell that i feel cr*ppier.
i think that we have to amend our expectations of such treatments.
so in a nutshell i dont ask myself if it makes me feel better, but ask myself has it left me feeling cr*ppier?
really its your decision.
personally i can recommend a good haircut (works wonders) and the company of good friends.
now that always leaves me feeling better.
I did just mentioned that to someone else
My Mum has coeliac disease so it seemed an obvious answer when my IBS ramped up when I fell in love with home baking! Anyway, going GF didn’t sort it out completely (I ‘might’ have Crohns) but the plus points were worth avoiding it for.
I did a year completely GF and I read a lot of stuff and it is scary - we are just not designed for it!
If I really want to have bread/cake I will occasionally use spelt flour, it’s so much lower in gluten than regular flour but behaves reasonably well in cakes. I’ll buy spelt bread but not make it, you have to use double yeast and about double proving time and it’s still too heavy but maybe I’m just not that well practised with it