Since telling those closest to me a few short weeks ago that I most likely have MS from positive Oligoclonal bands in CSF and lesions in brain and spine I have had some pretty out there suggestions on the 'cure'. I know, I know this sounds crazy but many have suggested problems with the gut are related to the immune system. I haven't ever thought I had a problem in this area previously. People have suggested expensive tests for parasites, bacteria, then a vegan/vegetarian,celiac diet and wait for it...even a 'fecal transplant' (yuck) as a cure.
I understand MS is a worldwide problem affecting a significant number of people that generates millions of dollars in research and I don't really want to go outside the advice from the MS society. However, there is nothing like a bit of first hand information. So to all you lovely people: has anyone experienced a positive change in their MS as a result of changing diet, killing parasites, swapping poo or smoking dope? I understand that if you lose weight and cut down on alcohol etc you will feel better but I am asking specifically about a reduction in MS symptoms like the numbness and tingling that I have from my sternum to my toes.
You are so wise to ask these questions. Be prepared to hear all sorts of helpful suggestions for cures from family, friends and even strangers. So many people will have suggestions.
Most of us have room to improve our diets, and there is no arguing that can make us feel better but it won’t cure our MS.
You have a life time ahead of you to learn more about MS – ask lots of questions and educate yourself. Knowledge is power and by arming yourself with information you will be able to fend off suggestions such as fecal transplants (which is a new one to me!).
You've landed in a great place, full of wise and witty people. If you haven't located them already, I highly recommend reading out health pages, top right of your screen the yellow icon. There you will find answers to many of your MS questions and probably a few you haven't even thought of yet, so well worth reading.
One thing i've learned is that although people mainly want to be helpful, they often haven't a clue what they are talking about. It seems that the wackier the 'cure' the more people know about it and just can't wait to tell you about, "a friend of a friend's cousin who 'had' MS, they were once in a wheelchair but they did xyz and now they are climbing mountains", or something as equally implausable and along those lines lol
I tried eating my self well but those pesky tremors, muscle spasms and fatigue didn't want to shift for the better, just kept getting more frequent and once i started walking like a string puppet, well i figured stuff the healthy diet, lets try eating what I want when I want and see if that helps, ahhhhh nope! I eat healthy and still indulge in cake and icecream lol sort of a happy medium, eating better is always going to be better for you but the sx dont change, basically they are what they are.
Some of the more interesting loopy ideas are bee sting therapy and ingesting parasitic worms but i think i might have to add 'fecal transplant' to my list of 'OMG are you kidding me, thats THE cure?!' hmmmm I wonder who the donners are? Hope its Bonno lol
JJ, it's funny you mentioned the bee sting therapy... Someone told my husband about it so he did some research on it then started hounding me to do it... I was like you go stand out there and let a million freakin bees sting you and then I'll think about it... hahaha... Do I really have stupid stamped across my forehead? lol... Needless to say I didn't do it...
Other than that I really haven't heard of any whacked out cures for MS but I'm sure there are a lot of them out there... If it's gonna cause me pain though you might as well save your breath... I have enough of that without purposely adding it to myself...lol... I hope others will reply to this, I need a good laugh...
Since I was diagnosed well meaning friends and those I do not know have handed me articles and books on "MS Cures". My favorite was a pair of sunglasses with flashing lights that if worn an hour a day would repair my brain. I noticed my friend who paid hundreds for this device never uses it any more.
I had a Chinese Doctor who did not want me to start on the Copaxone. She could and had "Cured" MS. I ran.
I have changed my diet and exercise more. My reasons are simple. I can't afford MS or most other medical care. Right now my limited medical care is 50% of our income.
I recently went on a diet for my gut. It is eating fruits, vegetables, plain Greek Yogurt, nuts in small amounts all day to push the gut along. I also eat some whole grain rice and lean meat. I have to stay away from many things I like. I cheat once and my gut goes back. The good news is I can control it with out medication or laxatives.
My latest idea is boosting my Glutathione levels through diet. Eating certain vegetables, fruits, nuts, and spices. I have read some studies on it for MS. I do not go on line there are lots of bogus sites trying to sell you stuff.
Do I still have MS symptoms. You bet ya. Dropping 40 pounds and exercising has helped. I have high vitamin levels with out supplementation. All my other health numbers are great, blood pressure, cholesterol, etc, It is easier not carrying the extra weight.
I stay away from anything that says cure. I am willing to do things which seem reasonable. The diet I have chosen with out processed crap is what I should be eating anyway. I like the saying "You would not put sugar in your gas tank?
Great question. I changed my diet when I was dx with MS. Low fat and stayed away from dairy, all red meat, any added sugar, no processed foods...lots of veggies, fruits, brown rice, small servings of lean meats.
I also made a point of exercising about 5 times a week, mostly swimming in the hotter months and a sort of yoga and walking in the winter months.
I feel great and my sx have faded BUT each and every time I had a replase in my past, the sx faded without any of these changes. So, I don't attribute the fading sx to the changes in diet or exercise BUT it definately has helped me be a healthier person which is something that is so important when we are dx with an incurable disease.
The times I have indulged with sugar (like our church dessert auction) I have felt like cra p the next day. Pretty sure I would feel that way even w/o the MS but it's important to me to control what I can b/c there is so much I can't.
The important thing is to live as healthy a life as you can w/o being so hard on yourself that you aren't really living. It's a balance but very doable.
Great question - and yes - people come up with some crazy ideas of how you can "cure" yourself! But I always think about what the experts who have studied this disease for years say - and try to stay up on the research.
I love my monthly massage - It just makes me feel better - and as she is giving me my massage I think about her "healing hands".
I also exercise - used to run - but now try and walk daily - mix some light weights in - swimming is great although I don't do it that much.
I meet with a psych to work on emotional impact of chronic illness - meditation is great to quiet the mind when I can do it - yoga too.
The biggest message that makes sense to me is - there is no cure, but anything you can do for yourself to improve your overall health, will only be a benefit.
I also find humor to help a lot - my sister and I are going through the same thing and we just get laughing at some of our humor - which others would probably not understand - they may think we're a bit "sick".
Best of luck on your journey - oh and yes - I love this site for support and information - best I've found!
Thanks to you all for sharing your stories and your messages of support. It appears my suspicion has been confirmed that the 'cures' being peddled by friends are bogus. Phew, no matter how bad I feel I won't ever be pressured again to consider the more extreme methods.
I will try to use the MS as springboard to live a healthier life. Yes, I can eat more fruit and veg, cut back on processed foods, limit alcohol further ( I won't give up the communion wine) and try to exercise more. The exercise is the most challenging one because of the fatigue.
I recently tried 5 sessions at the pool, commencing with 2 laps and building to 6. At the end of 10 days I was absolutely buggered. Before I could run 5klms in 26mins, lift 60kgs on leg extension etc etc. Now, I am a completely different place but that life, eh? I will just have to be even gentler with exercise.
Anyway, I am incredibly grateful for the MS for giving me a better perspective on life, drawing me closer to God, family, brought out incredible goodness and generosity in people, and connected me with this fabulous group right here.
Hi there...I'm in Canberra so another 'local'... I was living in Goulburn briefly and a teacher at my son's school there said there is an acupuncturist in Sydney who has, apparently, 'cured' some MSers. The teacher emailed me his name and , unless I deleted it, I should still have the email....(it was 18 months ago so I'll have to check).
At the MS society here a lot of the MSers are talking about 'brain plasticity" - retraining a different area of the brain to take over the work a now damaged area would previously have done. I dont know much about it but it might be worth investigating. SBS had an entire series on in apparently.
My neuro here has 'cured' 2 people with MS using stem cells. http://www.abc.net.au/pm/content/2009/s2771501.htm
That's about all I know about alternative stuff.....I'm not on any drugs for my MS, but am really watching my diet etc. Oh, my MS nurse recommended the latest book by Dr Jelinek, which is an wholisitic approach including diet, meditation etc.
I think there are lots of things that are definately NOT bogus and worth investigating, though poo swapping aint one of them!
Sheesh Jemm i hope your not suggesting the stem cell replacement your neuro does and brain plasticity are the same as anacdotal alternative therapy's, cause they are so not the same!
I did read your posted article and it does not say 'cure'
"He warns that this procedure can only be used in a few aggressive cases, but he says he is delighted to see a patient make a good recovery from an MS treatment.
BILL CARROLL: I think it's fair to say that treatments have improved enormously for patients with Multiple Sclerosis, and they've improved enormously in two ways.
One: There's very many more treatments available, but more importantly, we've learned that if you institute the treatments earlier you get much better disease suppression and then you have a chance for some improvement.
So the problems is the more aggressive the treatment that you use, the greater the risk. But in those that have been used experimentally so far, including bone marrow transplants in patients with earlier disease, there is some improvement that we're seeing.
So whilst it's not a cure, it's closer to a cure than we've ever been before."
Both stem cell and brain plasticity do not remove the underlying cause but they do have scientific evidence to support improvements of lost skill sets, improvements but not the cure unfortunately. I actually get a bit uncomfortable hearing about acupuncturists and hebalist etc who claim to cure incurable diseases, it reminds me of the acu guy who insisted he could cure my dad's 'terminal' cancer, blood su_cking parasite who prays on peoples vunrabilities, the lowest of the low is what i think of people who claim the imposible.
On a personal note, I have no doubt neither of my children would be as successful as they are if not for the work they/we did to rewire their brains, brain plasticity is medically documented and used daily for stroke patients etc, the science based therapy works by rewiring brains with huge areas of damage.
ohhh can you tell i'm a fan of brain plasticity lol
JemmAus, are you talking about this forum? Depressing and scary? Please tell me I just read that wrong... I would have given up a long time ago had it not been for this place... In fact when I'm afraid or depressed this is where I always come...
The people here can snap me out of a bad mood instantly... I feel like over the years I have made life long friends here and I hope that there are those out there who feel the same way about me... It's like a family and every day we have a family reunion...
I certainly hope I'm mistaken about your last line but regardless I pray that nobody else reads it like I did and more than that I hope nobody believes it...
At no stage was I criticising YOU or anything of that nature, i'm gob smacked you'd even think I'd do that to you or anyone else. I know 'you' know one from the other, i've actually missed you (!!) and was so please to see your puppy pop up on the boards. I really really thought i'd conveyed my smile, cause that is exactly what i was doing when i wrote that post. I'm gutted cause i would never want you to feel this way!!!!!!
I was going to send you a note titled "oh my god fecal transplants are a real medical proceedure" I was also going to ask if you'd seen Catalyst last night? It was shown and i almost threw up when i saw poo in a blender. I kidd you not though not about MS it was about a science based procedure for gastric ulceration, something to do with gut flora transplants to the colon and helps it heel. You live and learn, who'd of thought lol
If you want to talk please PM me, if your feeling down i'll always listen, seriously shocked you've been feeling this way about the forum, lets talk......please!
I'm a little late to say thanks for joining us, and don't have much to add to what the others have already said, but wanted to say welcome you just the same. Docs talking disease therapy in your near future?
I love your screename, btw.
So glad you were given it straight in terms of alt therapy for MS. Only one I know of that is on the up and up is stem cell replacement, but even that, I don't believe falls in the category of an alternative - it's a treatment that has worked on some, but not offered as a general rule - more than likely have to be accepted into a study. A doctor out of Chicago here in the states is well known for it.
Disease modifying drugs are our choices and I do believe they are serving me well. As for diet, I try to keep my weight down. The heavier I am, the harder it is to move what already feels like 100 lb legs. Has doc offered any meds for the tingling and numbness? How long have you had it now?
I absolutely meant it. Reading about other peoples' experiences with this disease, the pain and horror they go through, the dreadful side effects from the drugs, the depression, the a r s e hole drs they sometimes encounter - even if responses are 'uplifting', it just doesn't do it for me.
Good for everyone else if they find it helpful, I'm glad it works for you, but it just doesn't do it for me. It scares me.
I disagree with you JemmAus... reading what others go through helps a lot more people than you realize... Sure MS is scary... It's a "disease"... Any disease is scary... The thing is even when you think your at your end you can read someone else's post and realize, hey, they've been here and got through it so I bet I can too...
I've also learned a lot about how to talk to the doctors and advocate for myself... Some people also go through a lot of pain with their MS... But there is just as many that doesn't go through pain... This helps a lot of people to know that just because they have MS doesn't mean they will necessarily have pain with it...
The main thing that makes me love this place is the friends I have made... People that understand exactly what I'm going through... People who don't judge me.... People that I have around to talk to any time I need it... No matter how horrible, painful, or scary this disease may be we still have each other and to me that's a lot more important than my own fears of MS...
One more thing I would like to say... One of these days your gonna need and or want someone to talk to that understands what it is your going through.... You know what? When that day comes we will still be here and we will still be your friend regardless of how you feel!!!
Please re-read what I said. I am not denigrating anyone, or the forum, I just said it doesn't work for ME. Underline the ME.
I am glad it works for others.
Please understand - we all have different ways of coping and I have found that for ME (no one else, just ME) that this forum makes me feel worse. Call me weird, call me wacky, it's just the way things are.
I have found other methods of coping with MS work better for me than an online forum, and have plenty of friends (some with MS) in the 'real' world to discuss it with if I feel so inclined.
Hi tingletingle, This is what we would call highjacking a thread - where a whole different conversation spins off of the original post. So sorry it has happened here because you ask a very important question. I think it has been answered but I want to add my thoughts.
There are plenty of alternative therapies that I would use in addition to my traditional treatment. Those therapies include: acupuncture, massage, biofeedback, even reflexology. The key to all of these is first they do no harm and don't require me to turn my back on proven treatments. Secondly, they don't require exhorbitant amounts of money.
We all find different things that work for us and I hope you find some things to do that make your feel stronger and better equipped to deal with MS.
Jemm, I do understand the point you are trying to make. Not everyone is emotionally equipped to deal with having this disease at the forefront of their thinking and being here on the forum regularly does just that. I would venture a guess that almost everyone here at some time logs on to the forum, takes a look around and signs off, thinking "not today, not now." I know I certainly do that.
We have lots of people who come here regularly, then will disappear for months. Then they come back when they are looking for that something extra/special that we can offer. They stick around for a while, get to feeling better - especially about living with MS and getting in back in balance with the rest of their life - and disappear again. Its a cycle that I have seen a lot in the three years I have been here. And I actually think that may be a really healthy way to live with this disease for many people.
For me, I think less about my own MS when I am working through ideas and suggestions for others. Being here, as strange as it may sound, takes me out of my own troubles.
You are fortunate to have the network of friends and family to support you as well as the mobility and resources to get around. Many of us also have that luxury but there are others here who are toughing this out pretty much alone except for the support they receive here.
We can't be all things to all people, but I like to think we offer a pretty good smorgasboard that people can come to and pick up what they need. I'm glad you come around, Jemm, and add to the shared experiences.
I'm back from a family weekend away to celebrate my Mum's 80th birthday. First time people have seen me since diagnosis. It was funny noticing family members scratching their heads trying to work out what was different about me. Funny, one sibling told me they had bad arthritis in their legs which came across as an attempt to top my MS leg weakness.
Moving on, cool bananas JemmAus, you have certainly created a separate discussion which is healthy.Personally, let me say how valuable I have found this site as one sufferer to many others. I probably won't let the forum take over my life but certainly I am excited to get to know you all and lean on each other during the tough times. The undercover nature of the web means that I can share stuff with you people that I wouldn't necessarily have the courage to share face to face. And that is important with such an out of sight, out of mind disease like MS. Big thanks, warm hugs to you all - granny,Lulu, super, essdipity, sllowe, juju etc etc
Hello Sllowe, thanks for you good wishes. I love the contrast of your gorgeous photo and screen name. I think you have to have MS to be able to appreciate it. Yes, I think I have decided on Copaxane and most likely start in a couple of weeks after next MRI. Nurse is coming next week to show me the ins and outs of injecting.
Anyway, the thread has produced some excellent discussion. It's over to me now to slowly implement.
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