Thank you for such detailed and quick responses. Yes.. I'm absolutely hoovering info. Like crazy. It's very difficult because I seem to be on the mild side of this. I wonder.. Can I progress very slowly with no real big changes? Is there such a thing? Have any of you read " wheelchairkamikaze.com"? He is a blogger I think. He was speaking of a new drug Tecfidera. I see that's what you are on essdipidy.. Seems the least of side effects.
But back to some thoughts on diet. My husbands friend is a man with ms. He was bed ridden with all the awful effects. Such as loss of bowels, not walking, ect ect. About 2 yrs. He changed his diet and is now walking, riding bikes, and seems to me really healthy with no relapses. I THINK he was taking Meds but not feeking they were working. So with just an increase in vitamin D ect and diet much like the paleo diet, he's doing so much better and is i
Off all meds.
Ann Romney. Another case. She was taking meds but because of the awful side effects, she stopped and is using alternative therapies of a natural course. Reflexology, acupuncture, equine therapy, diet...( article on healthline)
This is so awful to me because I think in literal terms. This disease seems to have no exacts. Maybe/ maybe not..
There are more indications of diet related stories on YouTube. Doesn't it make sense if we eat foods that reduce inflamation it can at least slow progression/damage. Arent the drugs saying the same thing? Won't cure.. But will help slow it down.. 2 camps saying the same thing??
And I thought only spine lesions cause certain symptoms. Apparently not.
I'm not very " Techy" but I'll try your suggestion copy/paste to a new thread. I so appreciate the advise/help!!!
Hi Andy, welcome to our little corner of the web. :-)
Newly diagnosed is an emotional time and it doesn't sound like you had much time to consider MS as a possibility.
There is no need to rush a decision for disease modifying drugs (DMD). There are pros and cons to drug therapy and even with alternative therapies.
It is important to understand the benefits and detractions of both and decide what is best for you and your lifestyle.
I personally chose to use a DMD because I wanted to give myself the best chance possible to have as little progression with my disease as I could.
I also looked into naturopathic medicine and was advised that in order to reduce inflammation I would need to do the basic elimination diet for life.
While I could see the benefits, I was not prepared to give up certain things forever, but dealing with potential side effects from a medication was something I could live with.
Everyone is different and there are people who claim to have success with alternative therapy but I am not aware of any studies, only testimonials.
I wish you well in making your decision,
Thank you so much. has anyone heard of Meylin peptide patch? I think that's what it's cslled. It looks very promising without the awful potential side effects. What do you take if you don't mind my asking?
There are a lot of new treatments in trials right now, that might be one of them. It sounds familiar...
I was diagnosed almost 2 years ago and started Rebif. Overall it was decent with respect to side effects but my arms and hands don't always make injections easy. After a year of Rebif I switched to Tecfidera and have been on that almost a year. That gave me the option of taking an oral med.
One thing I forgot to mention was that DMDs do not treat symptoms. They aim to slow the disease process. Not sure if that factors into your decision or not.
Ok, I'll have to inquire about the patch.. Tecfidera seems most manageable. What were your symptoms that got you to look into ms? I had only 1 " attack" but one that I've gone down this road I'm faced with decisions.
Your husbands friends story is not dissimilar to what we've all come across, they basically all fall under 'The friend of a friends, neighbours sisters friends cousin etc' miraculous cure stories and urban legends....
lol I once got stuck listening to someone who had a story about her - friends -Dad's - next door neighbours - son - who lives in another state - who 'use to have MS' but he got himself a personal trainer and now he doesn't have MS any more........aaaaand the moral of that story is lol apparently just exercising will somehow stops your immune system from attacking its self and it will fix up your double vision, bladder dysfunction, cognitive issues and everything else but if it doesn't then it just means YOU didn't work hard enough er rightyho sure i'll get right on that after i've done my bee sting therapy and had a faecal transplant ROFL
I really love wheelchair kamikaze's blogs but keep in mind he doesn't have RRMS so he wouldn't have the option of DMD's because of his progressive type of MS, he also comes across as being very proactive which i love about him but he seems a lot more willing to take on higher treatment risks, basically he's doing what ever it takes.....
Ann Romney hasn't ever (imho) been advocating diet over DMD's, she hasn't been promoting diet as a cure or anything similar to encouraging MSers to give up any medication, she even openly talks about her MS relapses and its progression etc. She is heavily involved in the science and medical research side of MS, which would be totally at odds if all the impressions people make of her personal situation were all actually true.
Honestly no matter who you read about, true stories or urban legends, unless you get it from the horses mouth so to speak, you'd be basing 'your life choice' on anecdotal stories, which all typically have incomplete or excluded personal history, often include controversial statements, inaccurate facts, promote misinformation and uphold common misinterpretations etc. etc
There is a normal psychological connection to there stories, its human nature and natural to hyper focus on what ever aspect endorses and supports what you want to be true, advocating your already established belief etc etc whilst unconsciously allowing you to overlook any and all evidence that is in direct conflict or disproves that belief etc. The higher the anxiety you have about something, the more likely you are to be unconsciously seeking out supportive testimonials, quasi research, miraculous cures, non standard treatments etc.
As I said it's human nature but the key is making sure you stay open minded, and maintain a health dash of scepticism with anything not fully endorsed by the international MS societies. It's also helpful in MS decision making, if you learn to trust your MS doc, who really 'should' know more than you do about everything MS [one day you may know more :D] remember he/she specialises in MS and will have most answers to your questions, he/she will also genuinely have your best interests in mind with what ever he/she recommends for you!