[Ragtop262]

Last night I realized that it had been exactly one year since this crazy journey began. I took some time to go back over my notes and reflect a bit on what has happened, where I’ve been, and where I’m headed.

I realized that I've been so focused on the little roller coaster of how I feel from one day to the next, that I haven't been thinking about the big roller coaster of how things have progressed over the period of a year.

I'll spare many of the details, but I went from waking up one morning last July with ringing ears, to twitching muscles, then cramping, to bottoming out in December when I had to take time off work because I could barely get up and down the stairs (looking back - more due to "fatigue" than actual muscle weakness).

After testing at least ruled out MS/ALS, or any other really bad problems, my strength started to come back, only to be replaced by the burning feet and other signs of SFN. By February, I really thought I was once again going to be missing work due to the pain in my feet.

Shortly after that, I landed on this site and eventually joined the forum. Based on the advice gained here, I improved my diet, began exercising again, reduced stress, and began taking supplements (17 different ones at last count). More recently I had genetic testing done, and found that I have significant mutations affecting methylation - so I'm addressing those as well.

It honestly wasn't until I started looking back, that I realized I have regained much of the life that I had lost back in the dark days last winter. My strength and energy level is back up, and my feet don't seem to hurt as bad as they once did (or maybe I'm just getting used to it).

Anyway, I realize I have much to be thankful for. One of those things is the great people that frequent this forum. I'm not sure what caused my problems, I'm not sure why they have improved, and I'm not sure if the improvement is temporary or permanent. But, I'm pretty sure all the suggestions everyone has provided are helping significantly.

I'll keep checking in here, and hopefully I'll be able to offer some helpful advice to someone else. I hope and pray that my improvements continue - and that everyone else here finds some comfort and improvement as well.

[Healthgirl]

That was a great update!
Just curious. Did you suffer from any autonomic issues at any point?

[Ragtop262]

Originally Posted by Healthgirl

That was a great update!
Just curious. Did you suffer from any autonomic issues at any point?

I'm not aware of any autonomic issues. However, I have suffered with IBS issues for most of my life. For some reason, the IBS pretty much disappeared around the same time the neuropathy issues started. Now that the neuropathy issues have been improving somewhat - the IBS is coming back.

Not sure if that was a sign of some autonomic impact or not, but it does make me wonder...............

[Neuroproblem]

Originally Posted by Ragtop262

I'm not aware of any autonomic issues. However, I have suffered with IBS issues for most of my life. For some reason, the IBS pretty much disappeared around the same time the neuropathy issues started. Now that the neuropathy issues have been improving somewhat - the IBS is coming back.

Not sure if that was a sign of some autonomic impact or not, but it does make me wonder...............

You seem to be describing both Autonomic and Peripheral neuropathy. Your IBS couldve been a Temporary thing, like after an infection or something. Can you enlightn us what tests you have done already, or you still cant find out whats wrong?

[madisongrrl]

Originally Posted by Ragtop262

It honestly wasn't until I started looking back, that I realized I have regained much of the life that I had lost back in the dark days last winter. My strength and energy level is back up, and my feet don't seem to hurt as bad as they once did (or maybe I'm just getting used to it).

Thanks for the fantastic and detailed update. What do you think were the best or top things you did to fix your fatigue? All of us are slightly different as to how we've found improvements...

[janieg]

Originally Posted by Ragtop262

I'm not aware of any autonomic issues. However, I have suffered with IBS issues for most of my life. For some reason, the IBS pretty much disappeared around the same time the neuropathy issues started. Now that the neuropathy issues have been improving somewhat - the IBS is coming back.

Not sure if that was a sign of some autonomic impact or not, but it does make me wonder...............

The effect my gut has on my neuropathy knows no bounds. I have an appointment with a gastro on Monday.

Here's hoping for your continued improvement!!

_____________

[Ragtop262]

Originally Posted by Neuroproblem

You seem to be describing both Autonomic and Peripheral neuropathy. Your IBS couldve been a Temporary thing, like after an infection or something. Can you enlightn us what tests you have done already, or you still cant find out whats wrong?

I'm 53, and have had issues with IBS since I was a kid. (Mostly diarrhea occurring shortly after eating.) That had been my "normal" for about 45 years. When the PN symptoms started, the IBS symptoms stopped. So, the function of my digestive system changed, but I can't necessarily link that to the PN. (I made a lot of diet, supplement, and lifestyle changes that could also have played a role.)

However, now that I'm seeing some improvement in the PN symptoms - the IBS symptoms have been coming back. It does make me wonder if they are linked

[Ragtop262]

Originally Posted by madisongrrl

Thanks for the fantastic and detailed update. What do you think were the best or top things you did to fix your fatigue? All of us are slightly different as to how we've found improvements...

As far as the fatigue - I think a lot of it was psychological. I had basically convinced myself that I had a fatal neurological disease, then find out that I didn't - only to later realize that I actually have a condition that won't kill me but may become horribly painful and debilitating. That can put you in a very dark place. I'm not sure what pulled me out of that place, things just got brighter over a period of time.

The other thing that seems to be helping is a multi-vitamin/mineral supplement I've been taking over the past month or so that is formulated for methylation support. I decided to try it due to the MTHFR and other methylation mutations I have. (I was already taking most of the standard PN supplements, but something seemed to click when I started to take this.)

If your interested I can give you the link to it, but I don't want to appear to be promoting it. It's not particularly cheap and its only been a month and I don't really know for sure what is doing for me - much less what it would do for anyone else.

[pinkynose]

Originally Posted by Ragtop262

As far as the fatigue - I think a lot of it was psychological. I had basically convinced myself that I had a fatal neurological disease, then find out that I didn't - only to later realize that I actually have a condition that won't kill me but may become horribly painful and debilitating. That can put you in a very dark place. I'm not sure what pulled me out of that place, things just got brighter over a period of time.

The other thing that seems to be helping is a multi-vitamin/mineral supplement I've been taking over the past month or so that is formulated for methylation support. I decided to try it due to the MTHFR and other methylation mutations I have. (I was already taking most of the standard PN supplements, but something seemed to click when I started to take this.)

If your interested I can give you the link to it, but I don't want to appear to be promoting it. It's not particularly cheap and its only been a month and I don't really know for sure what is doing for me - much less what it would do for anyone else.

Thank you for this post! Would you share with me what tests you had that alerted you to needing Methylation support. I haven't come across this yet but i am relatively new to all this and researching like there's no tomorrow... I wouldn't mind the link also.

[Ragtop262]

Originally Posted by pinkynose

Thank you for this post! Would you share with me what tests you had that alerted you to needing Methylation support. I haven't come across this yet but i am relatively new to all this and researching like there's no tomorrow... I wouldn't mind the link also.

There are a few places that will do genetic testing, the most popular seems to be 23andme. https://www.23andme.com/

They only give you the raw results. But, you can then run them for free through Genetic Genie https://geneticgenie.org/methylation-analysis/ to get your "methylation profile", which shows any genetic mutations that could affect methylation (This is covered in many posts scattered through this forum.)

As for the supplement that madisongrrl asked about: http://www.holisticheal.com/all-in-o...-capsules.html

Like I said - I'm not in any way promoting or endorsing this supplement, just saying it seems to be helping me. I have known MTHFR mutations and that's what the supplement is intended to address, so it may not be appropriate for everyone.