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Just Checking In - 3.5 years and counting

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Old 02-01-2018, 04:52 PM   #1
Ragtop262
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Default Just Checking In - 3.5 years and counting

Hi everyone, sorry I haven't been on the board much lately, but I do like to at least check in every 6 months or so, to update those I've corresponded with in the past, and to offer some hope for those that are newer to the board.

As some may recall, in summer of 2014 I had a fairly sudden onset of muscle tightness which led to twitching and cramping symptoms over a period of a few weeks. Later, those symptoms faded somewhat but were replaced by fire in my feet and some numb toes. Of course I had all the tests and got no answers. Things stabilized after about 6 months, and then started to get a little better.

At this point things are still going well. The foot burning has moderated somewhat and is now more of an annoyance that a major problem. I still take some gabapentin, but have cut back from 1800 mg/day to 600 mg/day.

I went down to the basement today in bare feet, and thought to myself "this floor feels really cold today". So, it does seem that my numbness may be getting a bit better as well.

So anyway, I know that this disease could turn around and get worse again at any time, but for now I'm glad that things are stable or even slightly improving. I pray that everyone else on this board can find some measure of comfort as well.
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Old 02-10-2018, 01:52 AM   #2
Chicosalt
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I don't know as i have ever posted, but your little update prompts me to. I find I'm always looking for that reassurance that my neuropathy won't send me into years of misery. This may help another, even for a night's sleep 💤:
In 2015 I felt an odd "numbish" sensation near my ankles. I was living through a time of UBER anxiety and choked it up to nerves- not unheard of. Continued w the growing numbish sensates and pooh poohing for about a year when doc said- ""Sounds like neuropathy," (didn't help the anxiety!)
I received a confirmed diagnosis in 2016- Idiopathic Long Fiber Axonal Neuropathy (to date can't believe I can remember that whole thing) and was told that I likely have autonomic and motor neuropathy to boot. I had also begun with the burning.
Today, two and asked half years later, the burning is gone but I THINK the numbish thingy is growing- albeit sooo slowly… I have a little electrical zap every now and again.
As I've read over and over, I have no idea where this is going. My anxiety about it is mostly in check, I take boatloads of the supplements most commonly recommended in the sticky notes.
Wanted to add these random, (not SO frightening) notes to those new to this adventure.
Numbish feet always, calm tonight, tomorrow- ???
And there ya go.
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Ars longa; vita brevis.
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Old 02-14-2018, 03:06 PM   #3
ElaineD
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I'm at eight years and counting. But my FIRST diagnosis was profound PN. And I still have it. I've also added Small Fiber Neuropathy, about three years ago.

I can feel the cold tile under my feet in our bathroom and I always have. But I walk with both leg braces and a walker. Two of the three major nerves in my lower legs are profoundly ('dead') damaged and the third is severely damaged.

I have had every single possible test (heavy metals, genetic, spinal tap, MRI of entire spine, etc) and no cause has been found. My orthopedist (Duke affiliated) said last week: 99% of PN cannot be stopped/cured, and over 60% is idiopathic.

I take 3600 mg gabapentin a day for my SFN (skin on fire sensation). I recently started LDN (Low Dose Naltrexone) for pain, and it works amazingly well. I seem to be acclimating and the side effects are lessening.

The chances for remission/cure for PN are very low,, very very very low. Most websites will not say this, they will talk about physical therapy, whatever 'cure' they are selling, and diet and exercise.

Diet and exercise will make you feel better, for sure, physical therapy (which I have had four times in 8 years) will strengthen you, and a balanced diet, high in protein and low in carbohydrates will give you energy and even out your highs and lows.

I wish I could write a success story. My success is in coping well with what has been my lot in life....a very complex Immune Disorder.

Regards, ElaineD
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Old 02-16-2018, 10:03 PM   #4
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Hi Ragtop,

Nice hearing from you. Glad you're holding your own.

I hit the four-year mark in November. I've definitely seen improvement with the worst symptoms, but have a new interesting one. I get "skin rushes" (for lack of a better term) all over. Sometimes they're full-body, but mostly localized, I had ones yesterday that simultaneously were hitting my left thigh and the right side of my head. Just so bizarre.

The biggest problem I have at this point are sporadic bouts with intense cramping in my feet and lower legs. Can't isolate what gets out of whack. It's definitely not just hydration.

My neuro retired, and I saw a new one. She was very sympathetic and thorough, but had no idea. So the adventure continues. I'm continuously trying new things still hoping for the magic bullet.

Hang in there.

__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013 with bizarre sensations all over.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL, low-normal levels of biotinidase apparently cause hypoglycemia.

Continually experimenting with supplements:
  • 100 mg R-Lipoic Acid, 4 Tbsp milled flax seed, Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Biglycinate
  • 5 mg Meribin Biotin for low-normal biotinidase levels thanks to a genetic mutation. The biotin appears to have "cured" my hypoglycemia. My glucose never goes below 88, and I no longer become hypo when I fast or exercise without carb intake.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
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Old 02-16-2018, 10:08 PM   #5
janieg
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Hello Chicosalt,

Well, in this thread you've about two people who have weathered the initial storm. Try not to focus on it and let your brain work on accepting your new normal. I've come to view my average day as being like having a bad case of eye floaters...they don't bother me until I allow myself to notice them. Of course when I'm flaring and having bad cramps, it's a little hard not to think about it.

Janie

Quote:
Originally Posted by Chicosalt View Post
I don't know as i have ever posted, but your little update prompts me to. I find I'm always looking for that reassurance that my neuropathy won't send me into years of misery. This may help another, even for a night's sleep 💤:
In 2015 I felt an odd "numbish" sensation near my ankles. I was living through a time of UBER anxiety and choked it up to nerves- not unheard of. Continued w the growing numbish sensates and pooh poohing for about a year when doc said- ""Sounds like neuropathy," (didn't help the anxiety!)
I received a confirmed diagnosis in 2016- Idiopathic Long Fiber Axonal Neuropathy (to date can't believe I can remember that whole thing) and was told that I likely have autonomic and motor neuropathy to boot. I had also begun with the burning.
Today, two and asked half years later, the burning is gone but I THINK the numbish thingy is growing- albeit sooo slowly… I have a little electrical zap every now and again.
As I've read over and over, I have no idea where this is going. My anxiety about it is mostly in check, I take boatloads of the supplements most commonly recommended in the sticky notes.
Wanted to add these random, (not SO frightening) notes to those new to this adventure.
Numbish feet always, calm tonight, tomorrow- ???
And there ya go.
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013 with bizarre sensations all over.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL, low-normal levels of biotinidase apparently cause hypoglycemia.

Continually experimenting with supplements:
  • 100 mg R-Lipoic Acid, 4 Tbsp milled flax seed, Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Biglycinate
  • 5 mg Meribin Biotin for low-normal biotinidase levels thanks to a genetic mutation. The biotin appears to have "cured" my hypoglycemia. My glucose never goes below 88, and I no longer become hypo when I fast or exercise without carb intake.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
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ElaineD (02-18-2018), ger715 (02-20-2018)
Old 02-17-2018, 11:27 AM   #6
echoes long ago
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Quote:
Originally Posted by janieg View Post
Hi Ragtop,

Nice hearing from you. Glad you're holding your own.

I hit the four-year mark in November. I've definitely seen improvement with the worst symptoms, but have a new interesting one. I get "skin rushes" (for lack of a better term) all over. Sometimes they're full-body, but mostly localized, I had ones yesterday that simultaneously were hitting my left thigh and the right side of my head. Just so bizarre.

The biggest problem I have at this point are sporadic bouts with intense cramping in my feet and lower legs. Can't isolate what gets out of whack. It's definitely not just hydration.

My neuro retired, and I saw a new one. She was very sympathetic and thorough, but had no idea. So the adventure continues. I'm continuously trying new things still hoping for the magic bullet.

Hang in there.


have you tried slo mag for the leg and foot cramps. it has really helped to reduce my intense leg and foot cramps.
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Old 02-17-2018, 01:49 PM   #7
janieg
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Quote:
Originally Posted by echoes long ago View Post
have you tried slo mag for the leg and foot cramps. it has really helped to reduce my intense leg and foot cramps.
I took generic Slo Mag for quite awhile, but switched to magnesium L-threonate a few months ago. Can't say I can correlate any change with that change, though.

I had a really bad episode a few weeks ago after a business meeting meal. Something about that meal set me off into a flare that was unbelievable. I was one big electrified fireball with non-stop cramping that night. I always go back to thinking that I have some kind of enzyme deficiency that is exacerbated by the consumption of something. It's like I have a low-level of nerve-irritating toxin in my body that I can turn up the dial on by consuming the wrong thing. I know alcohol is something I can't metabolize right, but it's not the flare culprit.
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013 with bizarre sensations all over.

Metabolic issues: FBG -90 A1C - 5.3 with glucose spikes over 200, can't metabolize alcohol, high LDL, low-normal levels of biotinidase apparently cause hypoglycemia.

Continually experimenting with supplements:
  • 100 mg R-Lipoic Acid, 4 Tbsp milled flax seed, Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 2000 IU D3, 200 mg Magnesium Biglycinate
  • 5 mg Meribin Biotin for low-normal biotinidase levels thanks to a genetic mutation. The biotin appears to have "cured" my hypoglycemia. My glucose never goes below 88, and I no longer become hypo when I fast or exercise without carb intake.
  • Low carb "back to the farm" diet
  • Quell TENS unit, 5% lidocaine patches, magnesium cream
janieg is offline   Reply With Quote
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