Does anyone have any experience with Multiple Sclerosis?

[chud]

Have you looked at the paleo diet at all?

Interestingly, all of these seemingly unrelated diseases share a common cause: damage to the intestinal lining which allows large, undigested food particles to make their way into the body. This is called “leaky gut and the autoimmune response”. Here is a 7-part video series by Prof. Loren Cordain describing the etiology of Multiple Sclerosis. And please watch this TED talk by Dr. Terry Wahls, MD as she describes how she reversed her Multiple Sclerosis with a paleo diet. If you have an autoimmune disease you might consider trying the autoimmune protocol of the paleo diet. If you do, please tell us about your experience.

I would look into the blood type diet instead.

[Azer]

This was in the news not too long ago:

http://www.telegraph.co.uk/science/scie ... omise.html

[Taichiturtle]

This was in the news not too long ago:

http://www.telegraph.co.uk/science/scie ... omise.html

Looks promising, but 5-6 years away, and moderate chance of success.

[Azer]

Came across this today:

http://www.medicalnewstoday.com/articles/263774.php

By shedding light on how cells regenerate the myelin sheath surrounding nerve fibres in the brain, a new study published in Nature Neuroscience opens the door to treatments that could repair nerve damage and restore lost function in patients with multiple sclerosis (MS).

[Drake]

Definitely some interesting reading, folks. Thank you. Recently I came across an article describing a similar project between a Frankfurt lab, and Northwestern University research. It's been ongoing for over thirty years, and they are in the second round of testing. This time on human subjects. I've since changed my diet, and lost about 10 to 15 lbs. I'm on a specific vitamin regimen, and although I was loathe to do it I began to take two drugs specific for MS. Tecfideral, which just became available in the U.S., and Ampyra which has been around for decades. Dunno if either one is doing anything as yet, but so far no unwanted side effects ((other than *horrendous* breath from the tecfideral)). Neither one is a poison to the system, and has any of the side effects of interferon based drugs that are more commonly used in MS. My balance still sucks, but I'm becoming more ambulatory as of this writing. I'm still walking with a cane, but I don't seem to be needing it as heavily as before. Life is life, but things seem to be looking up.

[Azer]

Sounds good man! Was just reading your reply and it jolted a memory about a treatment I've read about a while ago. Seems a bit controversial though:

http://mobile.nytimes.com/2012/10/28/ma ... anted=all&

http://www.cbc.ca/news/health/story/201 ... rning.html

[Steve James]

My balance still sucks, but I'm becoming more ambulatory as of this writing. I'm still walking with a cane, but I don't seem to be needing it as heavily as before.

I definitely commiserate. I was going to start a thread on "recovery." My neuro condition affected my balance. Anyway, I learned a great deal. Before my operation, I didn't use a cane; I used my bike But, that was just to be able to put in steps. (I still carry my pedometer to count). After the operation, they asked if I wanted a cane, but I declined. I didn't know whether I could go back to work. It was the stairs in the subway that was the problem. They are long and steel and in rush hour I was terrified. Well, first lesson I learned was that the hardest things for me to do were the best exercises. Keep in mind that, at that time, putting on socks or tee shirts was a struggle

Afa balance, in my case, the best way I can describe it is that the feet (specifically the ankle, knee and hips have their own "brains." We take them for granted, but it's how we can walk down steps without looking. Without those brains, the eyes and ears have to take over. For me, this meant that I had to look down at my feet to know where they were when I walked. We take it for granted that the sidewalk is flat, but it often isn't. But, if it's necessary to look down, the ear canals are not in the right position and the tendency is to fall forward. If this has never been an issue, it is hard to understand --but it's almost like having someone inject novocaine in the joints. The body (brain) realizes it, so to compensate it just tightens up as a defense mechanism.

Well, in terms of recovery, I had to relearn how to walk. I suddenly realized why children did seemingly silly things. They skip or hop or walk unevenly, etc. It's not silliness; it's practice. So, I started trying to skip --and I quickly found out that I couldn't. Aha, that's what I started to do. A few years down the road, I think it helped. When it comes to neurological issues, or damage, progress can be very slow. Nerves grow at about 1mm per month --and they have the ability to make new connections.

Best of luck to ya!

[Drake]

Azer, Thank you for that. I like controversial, but that kind of scares me.

Steve,

With me it's not just MS. I also have had injuries relating to my (former) job and that complicates matters even more. Regardless, though, through my own trial and error I've found similar things regarding my balance. I am *so* aware of my balance these days. Stairs are incredibly difficult for me currently, and I have the same visions running through my head. What most folk also don't seem to realize is the depression that can creep up on you. When I've felt it I make sure to recognize it, and make the conscious decision to look at something brighter. There are so many variables involved that any one can cause an imbalance emotionally, physically, and psychologically. I don't ever want to be remembered as "that bitter old man with the bad attitude".

Thanks, everyone. It's cathartic to vent here at times, and the articles provided keep me moving forward. Even though I need a little help these days.

[Steve James]

What most folk also don't seem to realize is the depression that can creep up on you.

And, the depression is harder on people who have been active all their lives. Personally, I like to say out loud every day how happy I am to be here, and that this side of the grass is greener --and I can at least see if it's not. When I was first diagnosed, they told me it might be ALS. Needless to say, that was a bummer. Otoh, when I learned it wasn't, I had to smile.

Anyway, I would also argue that depression is not a bad thing. Being worried about being depressed will wipe you out. That's especially true if it happens when you're younger. Then again, if it happens when you're younger, you (can) learn to appreciate life (and other people) much more. (And, yeah, even those people we may disagree with ).

One other thing about depression. In my room, I have two telephone books taped together. They're my reminder. When I first came home, my first exercise was to just step up on them and then step down. That was about the most I could do. So, I keep them to remember where I was. It helps.

[Drake]

What most folk also don't seem to realize is the depression that can creep up on you.

And, the depression is harder on people who have been active all their lives.

Absolutely. My wife doesn't always understand when I act....... oddly........ and browbeat myself for my inability to do certain things. Or just normal, every day things. <<shrug>> I always seem to be apologizing for something nowadays. ((happy wife happy life))

Thanks, Steve. It's good to hear from another angle the struggles you've had to go through, and how they intersect/coincide with my own experiences.

No one *ever* has the same opinions, but at our cores we're all human. That seems to be a mitigating factor...... I hope.

[Drake]

Happy New Year, all!!! I figured it's been several months, and after rereading the previous posts I have to say that I'm actually less ambulatory than I was before. I stopped taking the Ampyra after having some serious issues with the side effects. I'm now waiting to be approved for yet another surgery to address my lower back/hip. Not a fusion. ((whew)) I've been finding that my depression is related to the neurological issues in MS. Makes me angry. I've been doing what I can, and forcing myself, physically, to push ahead. I got *incredibly* lazy over the holidays, however, and feel....... Fat. :| After weighing myself I need to lose about 15 lbs. I ate like a pig..... Cannoli, cookies, etc. have become my downfall. I still am doing research, and am finding very little new information that seems worthwhile. Enneehoo..... Just an update.

[Steve James]

Happy New Year! My resolution for the last few years has been to be thankful for each day. Anyway, I know what it feels like to lose the ability to ambulate. It is depressing. I'm sure you'll feel better once you find a satisfactory method of treatment.
Best of luck and all the best for the New Year.

[Taichiturtle]

Hi Drake

Since you started this thread, Tecfidera has been approved for MS. It doesn't help with walking, but it seems to slow progression. Are you on anything like this atm?

[Drake]

I've been on tecfidera since it came out. I refused treatment until it was approved. I *did* take Ampyra, and I found that it exacerbated my symptoms, and worsened them as time progressed. It's been interesting at the very least seeing how I cope with different things. I've found that I can be a bigger ass than usual when the pain hits me. I actually seem to be able to block it out, but there remains an overwhelming shortness in my mood. ::shakes head:: I definitely don't like that. Folks, even family, don't understand, and I don't like making *anyone* the brunt of my temper. Least of all family members. As I'd said before I'm waiting on a surgery that *should* alleviate the issues in my lower back, and hip(s). I've developed a huge amount of arthritis in my hips because of the massive doses of prednisolone taken as a kid for Krohn's Disease. ((it's been in remission for over thirty years)) It's crazy!

[Michael]

I recently heard an interview with a doctor who had severe and progressive MS, was bedridden, etc., but she reversed her condition and is back to a very productive life. Her name is Dr. Terry Wahls and I just have this introductory knowledge about her, but you can take a look and see what you think.

http://terrywahls.com/

After being diagnosed with secondary progressive MS, Dr. Wahls restored her health using functional medicine.

About The Wahls Protocol: An integrative approach to healing chronic auto-immune conditions by a doctor, researcher, and sufferer of progressive MS.