Canagirl:
I am also just starting out on my journey to find some relief from this disease. One thing that you have to remember when you search the internet is that it is mostly the people who are having severe problems and are the most desperate that are posting things online. Most of the people who are doing well just go on with their lives - they don't post their stories online.

There's a lot of threads on this forum that point to to various dietary plans (low sugar, low carbs, no gluten, healthy fats seem to be some of the common themes.) There's also lots of advice on supplements that can either relieve the cause (if its related to a deficiency) or provide help for your nerves to heal. There's no guarantees that any of this will work for you, but for the most part it can't hurt to try.

As for me, I'm taking some of the commonly recommended supplements and just recently started a gluten free diet, also increasing vegetables while limiting sugar and carbs in general. Too soon to tell if it's helping - but at least things don't seem to be getting any worse over the past week or two.

You also need to keep following up with the best doctors you can find, until they hopefully find the cause for your problems.

I really wish you the best. My kids are in college, and my biggest worry is staying healthy enough to keep working so I can support their educations. I can only imagine how difficult it is with a young child. Just do your best to stay positive and keep fighting every day. Doing things that keep your mind off of your symptoms is often the best medicine.