[canagirl]

Hello again,

I'm sure I have asked this before. I just need to hear of people getting better. I have scoured the internet and all I can find is people saying "I've had this for 5 years and it's only getting worse..." But there isn't really much out there at all. I have read this board and found most people aren't on here anymore. Does anybody know if these people got better?
Is this it? I am progressing so rapidly. Full body pain, burning, numbness (feels numb but not really), twitching, tingling, prickling, heat/cold sensitivity, etc. I cry all the time, my brain can't think of anything else. I am 30 years old with a baby. What is life going to look like? It's already horrible. Please, please post your improvements (not ones due to medication)

[jurgen975]

Canagirl,

Maybe GlenJ or Mrs.d healed or partially healed i don't know.
So you need to make a plan of action.Have you ever checked clinicaltrails.gov
search the clinicaltrail.gov site if there is a trail taking place for neuropathy and even if they don't let you participate find out how director is that is overseeing this trail.
Usually a company is mentioned on behalf the trail is taking place ...call them

Is here not a big university in Canada how has researchers you need to find these people and maybe they can help you.

Every university hospital has a professor how is over seeing research projects for corporations how want do a clinical trail found out who this person is and maybe he can over you help.

And last go a commercial route where is no outcome guaranteed but there are allot of commercial stem companies out there.

But if i was you try to if there is a university how can help you.
Ask your parents to help you if you cant Canagirl

[bluesfan]

Canagirl
Have just skimmed through some of your other posts to get a better picture of what you're going through. The fact that you have a young baby made me wonder if you may have a post pregnancy B12 deficiency causing your neuropathy.

Here's a link to a video that's very informative:
https://www.youtube.com/watch?v=BvEizypoyO0

The link is also on MrsD's B12 sticky thread so you may already have seen it.
Hang in there. Instead of thinking about what life is going to look like in the long term future it might help to focus that anxiety into making each day in the present the best it can be for you and your baby just by doing little things that make you both smile.
I can't tell you yet if I'm going to get better because I'm still waiting for a confirmed PN diagnosis. Like you searching for answers. Will post here if I get results.

[jurgen975]

I agree with bluesfan this could be something you have to look into

http://stichtingb12tekort.nl/wetensc...kelen/english/

[canagirl]

thanks for the suggestion. B12 was perfect. starting supplementing anyway and now it's "through the roof" so I stopped.

[EmilySH]

Originally Posted by canagirl

Hello again,

I'm sure I have asked this before. I just need to hear of people getting better. I have scoured the internet and all I can find is people saying "I've had this for 5 years and it's only getting worse..." But there isn't really much out there at all. I have read this board and found most people aren't on here anymore. Does anybody know if these people got better?
Is this it? I am progressing so rapidly. Full body pain, burning, numbness (feels numb but not really), twitching, tingling, prickling, heat/cold sensitivity, etc. I cry all the time, my brain can't think of anything else. I am 30 years old with a baby. What is life going to look like? It's already horrible. Please, please post your improvements (not ones due to medication)

Hi Canagirl,

I need to look back on some of your previous post to see your progression. I am a newbie to this as well, so I cannot offer any medical advice like some of the other veterans. However, I can say that trying to get it off your mind will really help with some of your symptoms. I am having very similar symptoms as yours, and in my nine week journey with this can tell you that anxiety intensifies the symptoms in the moment. I know it is much easier said then done to just chill and not think about it. I have good and bad days emotionally, but your strength will get you through the rough days. If you have a young baby, then you know you have a purpose!! Enjoy this time with your child, regardless of your health. You cannot control your body and symptoms, but you can control the way you respond. As for progression, I am not sure how things go up from here. I am waiting to see a neurologist myself, one whole month to be exact! I feel like if I weren't taking a medium dose of pregabalin I would be much worse. It at least helps the burning feet and hands, most days. I know you do not want to be medicated, neither do I, but that may be an option? Like with all of us, a diagnosis would be ideal so a plan can come together for a healthy or more healthy future. In the meantime, follow the links provided and look deep into the B12 def. Take appropriate vitamins. Have you had tests ran? I hope you find some peace and hope for the future. My thoughts are with you! Have a nice day. It's very sunny in TN today, so I enjoyed the sunshine with my husband, perked me right up (at least for a moment)!
Emily

[EmilySH]

Originally Posted by canagirl

thanks for the suggestion. B12 was perfect. starting supplementing anyway and now it's "through the roof" so I stopped.

Just now seeing this. Sorry I mentioned it in my post.

[Ragtop262]

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.