Hi everyone
Has anyone here tried to go the “natural” way of managing MS (without taking any DMDs at the same time)? I.e. natural supplements, diet, meditation, etc? If yes, with what long term results/ consequences?
Also, has anyone taken steroids only during a relapse? With what consequences in terms of disease progression and symptoms?
Thanks
Lara
[quote=“Lara1”]
Has anyone here tried to go the “natural” way of managing MS (without taking any DMDs at the same time)? I.e. natural supplements, diet, meditation, etc? [/quote]
I’m not your woman for that one - I got onto Avonex at the earliest opportunity and switched to Tysabri when it stopped working for me, several years later. [/quote]
Generally, steroids are ONLY offered when one is in the throes of a relapse. They don’t claim to do anything for progression, I don’t think, but they should damp down a disabling relapse. I have had a 3 day IV course a couple of times, after getting tired of waves of back to back relapses that showed no signs of abating. The steroids seemed to stop the rot both times, and I would not hesitate to use them again if I needed them. They are powerful drugs, but there is nothing to match them when a person is really in trouble.
Alison
Hi Alison,
Thanks for replying. Did/ do you still get relapses while on Avonex/ Tysabri? Do you feel the medication is improving your symptoms?
Lara
Hi I am like you dread the thought of taking drugs to treat my relapsing remitting ms I have had four major relapses in 20 years two of which is the last year have been offered drugs but not keen on taking them I have never taken steroids as a list of side effects is absolutely amazing and try to let my body here itself naturally as was told steroids only speed up the process by about two weeks so my view is is it worth it unless you cannot walk or move my nurologist said that was my choice I was also tested by the doctors for my vitamin d levels and now take vitamin d tablets as well as starflower oil and be bee propolis weather these do any good or not I do know but I consider. 4major relapses in 20 years not too bad
Hi
The thing is everyone’s MS is individual to them so what one person thinks has worked for them may not work for anybody else.
It is a braver person than I that would ignore the advice of my doctors. Looking after yourself and staying as healthy as you can is not going to do any harm but if only the treatment for MS was as simple as that. As Val has said MS can be a very serious disease, it is not to be messed with.
Good Luck!
Anne
Hi Do what is right for you, after talking with your neuro etc. I have been on DMD’s for some years and scans have stabilised. Unfortunately i have had lots of side effects from symptom relieve meds like baclofen and gabapentin so I try to use alternatives, and do my physio etc. I do use meditation, as this helps at night with pain. It does take practise. There is evidence now that meditation can help with pain management and there is literature on this. This is not to say pain goes but our relationship with it changes.
Lots of good info on this thread for you
Best wishes to you for the future and your decision.
The way I saw it (and see it still), MS is a dangerous condition and needs to be taken seriously and treated with respect. For me, that has always meant taking the least powerful DMD that does the job. For years, that was Avonex. I had some good years on Avonex, kept working, all that. Then my MS turned ugly (lots of relapses, all leaving permanent damage) and it became clear that it was time to turn to something stronger. Fortunately for me, Tysabri was waiting in the wings, so I was able to climb on to that life-boat. I have been on it 3 years now, and no significant relapses so far, fingers crossed. 15 years down the line since dx with MS that had been aggressive right from day 1, and I have all sorts of permanent deficits, physical and cognitive, but I’m still up and about and enjoying life and very glad to be in as good shape as I am. I am grateful to always have had access to the DMDs that give a person the best chance of staying as well as possible for as long as possible.
Alison
I always love the alternative treatment question. Here are my experiences:
I had acupuncture for a year after diagnosis. Felt better, physically after I stopped it (although the acupuncturist was a great counsellor, which was part of the reason I carried on for so long).
I followed the Swank diet for about a year, still carried on deteriorating slowly.
Started to follow the ‘Best Odds’ diet. I was on this for about three or four years. While I was on it, I started having relapses and deteriorating a lot faster.
I was still on the Best Odds diet when I started taking cannabis (swallowing oil which I’d infused cannibis leaves in) - still deteriorating fast.
I stopped taking the cannabis because I started on LDN. It did nothing for me.
I stopped taking LDN, I think after about two years. I then tried Helminth therapy. This is where you have put a plaster with miniscule parasitic worms on it on your skin. They burrow in an make their way to your gut, where they live. I had them there for a year. Still deteriorating fast.
At this point, in 2011, I got rid of the worms and went on Tysabri. I was still deteriorating quite fast for at least a year when first on it. I am still deteriorating but I feel the rate has slowed a lot. Which is a good thing, because I am now in quite a sorry state - can walk 25 metres with two sticks, but need wheels for anything further and have problems with bladder control on and off. I have recently started to do exercise every day on a cross-trainer and am seeing lessoning of my fatigue and some strength improvements. I’m gradually increasing the amount I do - after about six weeks, I am up from 12 minutes to 24.
So there we go - my experiences of alternative therapy were completely negative and I really wish I had been put on Tysabri earlier.
Hi,
I was really ill at diagnosis and I was lucky, because Rebif was available and it worked very well and still does after 14 years.
I was too scared to leave it to alternative therapies and too ill. However, they have their place.
I changed my diet 8 years ago and have felt very good since. I tried LDN and took it for 3 years, but it does nothing now. It had helped with my bladder and spasticity.
Any alternative therapy that lowers your stress levels is going to be worth trying. I love reflexology and a good haircut! The person who helped me enormously was my chiropractor. MS can give you horrible muscle spasms and pain and make you feel thoroughly miserable. My chiropractor taught me how to relieve the muscle spasms and gave me hard massages that relaxed the big muscle groups.
If you read the MS research blog (Barts blog) you’ll see that they are worried about brain atrophy. MRI scans - not just at diagnosis show how your MS is (or isn’t) progressing. According to the Docs there, you should push/ask for more MRI scans. sound of me falling off my chair laughing
I’m actually better now (in MS wellness) than I was at diagnosis in 2000. Steroids do help - especially if you are a musician, as time away from work is not good.
I had applied for the Campath trial in 2001 (Lemtrada) and I wish I’d got on to it. I think I’d still try it now, even though it’s 15 years down the line. It’s not that Rebif doesn’t work for me, but I’d welcome the chance of NoEvidence of Disease Activity - or NEDA.
MS is serious. It’s a big, bad illness and whatever you are offered is worth a try. (except colloidal silver, bug zappers, worms, orthodentistry, CCSVI, antibiotics, injections of dodgy stem cells into your neck, lightening therapy, ayurvedic powders, remote healing, high doses of antibiotics and no, you probably don’t have systemic candida or Lyme disease).
Yes, your MS may turn out to be very benign. You can’t know though. It took 10 years for me to have another scan which confirmed that my MS isn’t progressive…yet…
I wish you all my very best,
K
I’m firmly in the medication camp. I had two ‘significant’ relapses leading to diagnosis and they were just 3 months apart. The second of these left me numb from the waist down and barely able to walk for several weeks. It took me several months to be able to walk any distance with something resembling normality. I wasn’t keen to repeat that experience so was very keen to get on DMDs. I chose Rebif which worked well for almost 4 years but last year I again had 2 relapses within 3 months. My walking, whilst not as bad as 4 years previously, was still severely affected and I needed steroids for the first relapse to free my legs off and get me moving again. (I do believe in steroids for severe relapses as they kick start recovery and are therefore worth the side effects.). I have now switched to Gilenya and have been on it since November. I’m hoping for at least a few more years without relapses. I’ve only had MS 5 years and already need a stick for walking more than a few hundred meters so I’ll do whatever is necessary to prevent further relapses and progression. I also do yoga weekly as I find that gently stretching my muscles is very beneficial and helps with the pain. The relaxation techniques, I feel, have helped me to stay calm in stressful situations and I’m sure that helps my health too. My neuro approves of yoga so it wins me ‘brownie points’ at my annual review. I’ve recently seen a neuro physio as I needed extra help with my balance. Tracey x
Hi Lara,
Horses for courses really, the lovely Val and others should add a rider on their messages saying it suits them and more people get adverse reactions to DMDs than get good reactions.
On saying that you get nowhere if you don’t try; all treatments are very individual. Before the DMD Brigade decry my remarks I was one of those in 1999 (I think) who protested at the House of Commons because NICE refused DMDs to be given under prescription. Probably the best thing the MS Society has ever done was organising this protest that eventually changed NICE to the opinion to let the NHS cover the cost.
I felt it I was protesting the right for people to be given a very expensive drug; people should be offered it free under the NHS. Our NHS is so precious; inefficient and expensive but precious. I wonder, hand on heart how many could afford £10,000 per year?
Nobody can guarantee any treatment will have a certain result. All have their advocates; mines best; prove me wrong; Snake Venom; nah tell you what don’t go there. I know what’s good for me and no one can get it anyway.
G
I couldn’t agree more with G’s comments about the NHS. I’m about to start Tysabri and I understand the cost of this treatment to be around £25,000 per annum. I was only diagnosed in October last year, but my nurse believes my MS is “very old”, which is probably why I already walk with a stick (often 2 following my most recent relapse), and have a collapsable wheelchair in the car for when long distances need to be covered or my fatigue is severe. I don’t honestly think natural remedies will improve my condition. But thats not to say travelling the medication route has been a picnic! I’ve twice had very bad experiences with steroids, and now refuse to take them. Plus I was eager to start DMDs when they were offered, only to discover they sent me headfirst into deep depression and I had to stop taking them. Whilst waiting to switch to Capaxone I had a severe relapse and so now my neuro wants to start me on Tysabri, which comes with a whole bunch of potential problems of its own. In the end every individual case needs to be looked at according to the patient’s preferences and the severity of the MS. Ultimately, each to their own 
Good luck with whichever path you choose to take Kaz xxx
Thanks, G! I am one of the ones who got the good of this. Dx RRMS 1999, started Avonex 2000, after a scary time of worrying about whether it would be NHS-funded or not.
A
the title of this thread is “alternative therapies” which implies that they are used INSTEAD of dmd’s.
i still have my daily jabs of copaxone but sometimes enjoy a “complementary therapy” which means that they can be used alongside dmd’s.
treats that make me happy and keep depression at bay are important.
tickets to see a band and a good haircut!!!