NeuroTalk Support Groups - New here...this seems to be a forum for me

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - New here...this seems to be a forum for me (https://www.neurotalk.org/peripheral-neuropathy/182177-forum.html)

Just wanted to pop in and say a big THANKS for the reminder about B12. I don't know if it's helping, or a flare of sorts is subsiding, but who cares. My burns and tingles and pins and needles are much less, my strangling throat isn't so bad and I'm sooooo so thrilled about that.

I have the 5mg B12, I read at some spot to take it for a month and then switch to the 1mg. Or something like that. I (just now realize) haven't gotten my B12 results from the doc so I'll call again on that, but it isn't likely to ever get toxic is it? I have the (very tasty) Jarrow chew-able that I take first thing in the morning, if dose is ever an issue, could I just switch to qod or 3x/weekly?

No, toxicity is not an issue with oral. And also, B12 does not have an upper limit set by FDA for toxicity either.

If your levels from the doctor are high (over 600) you won't need the 5mg for long. If 400 or below, it is best to take your 5mg for 3 months, and get a retest to see if it is working.
If you go over 1000, you can safely reduce to 1mg a day or use the 5mg every other or every 3 days instead to maintain. This is just a convenience factor in reality.

Some people it has been found by Dr. Snow in his paper back in 1999 just need more and do better on B12 even though fairly normal. And if you are not methylating properly you will need the methylB12 for life.

That's great and very promising that it is working for you so quickly. ;)

Quote:

Originally Posted by BetsyAnn (Post 948102)

I finally got my B12 results, they were 938...I was a little shocked at the 'normality' of them LOL They were done over the summer and I have no idea how B12 levels range over time. But I'm going to guess I'm not running 'low' most of the time. I will keep taking the B12 as I figure it can't hurt.

So is it typical for neuropathy to flare and then go into a sort of 'remission'? I do have spells of nasty pain/tingles/fasiculations and then weeks where I am fine. There are some things that will bring on issues regardless (such as using the computer), but during 'flares' I am out of commission no matter what I do or don't do. This most recent 'flare' hasn't fully settled down, but it's getting there.

I also ordered the Bentothiamine or whatever it is (sorry, eyes are extra blurry today so I'm not double checking LOL) and will add that to my repertoire.

Thanks again for all the info :)

And just because I'm pushing my luck here at the comp ;)

One thing I'm noticing a lot lately is medial knee tingling. The knee that bothers me most is one that I've had issues with since college so about 20 years off and on (no injuries). But it was/is typically an achy/pressurized sensation, like I've pulled a muscle at the top of my calf. The last couple of times I've tried biking, it starts hurting, although not in the same place, now more anterior (quad insertion?) but regardless of where the ache is, it tingles a lot on the medial surface. My middle toe goes numb on that side as well. I had a twitch in my upper abdomen for 10 days, it was so distracting...you could see it moving. It was hard to sleep through it. Twitches come and go, here and there, lately I've had one in my left inguinal area. I get jiggly sensations in my ankle now and then, sometimes my feet are very hot and itchy, just random stuff. I know this is all very minor, I just can't find a pattern that fits with anything. My hand are by far the worst. I was shocked to hear the EMG/NCV showed peripheral neuropathy of the lower limbs, I don't even know any specifics on that. The throat/choking sensation has almost driven me crazy, thank goodness it's lessened. Lots of things coming and going, it's hard to keep track. No rhyme or reason for most of it that I can find. /end random train of thought

Quote:

Originally Posted by BetsyAnn (Post 946263)

Hello again :) started as carpal tunnel syndrome I got nasty shocks in my hand whenever I would grab something, to the point that I would drop many items due to the surprise of it LOL.
Not fun. Eventually that severity died down but the issue remained, although it would mutate and sometimes it would burn in my forearm, it would feel like ice on the back of my hand, etc. Had CT release about 2 years later, EMG/NCV did show slowing in CT cannal, but at the time I didn't realize I was also having ulnar nerve symptoms, I just chalked it all up to radial/CT.

Got better for a while, but not long, I continued to have problems and finally went back to the doctor, another EMG/NCV this one showed improvement in CT area, but Guyon's cannal was slow and I also had irritation further up in my arm.
I still can't use that hand with a mouse for any length of time. But now my left arm is also getting easily irritated, using a computer is not something I can do for long stretches and if I do I pay for it (which sucks b/c I love to work w/photo editing).

So I figure I have one bad hand, and the other is going bad b/c I'm overusing it on the comp to save the first hand.

I feel like I'm being strangled/my neck feels tight, yet also fatigued like it can't even hold up my head. My hands are a tingling mess, my knees are tingling, I get random shooting pains and cold sensations in my arms and legs. I don't know what to think or do anymore.

If you read my novel, bless you :heartthrob:

Some of your ongoing symptoms with the arm/hand/neck fatigue, & the previous carpal/ulnar stuff, makes me wonder if thoracic outlet syndrome (TOS) might be a factor to consider. Many MDs are not fully aware/knowledgeable of it.:(

Could you be having neck muscle spasms/tightness? Some even have had intercostal (ribcage) muscle spasms that mimic heart issues.

You might want to explore our TOS forum for more info -
http://neurotalk.psychcentral.com/forum24.html
be sure to check out the sticky threads too.

If you have spasms, fasiculations, you really might need magnesium. You can soak in epsom salts, and if that helps, you
can try an oral supplement. Avoid oxide form as it doesn't get absorbed. But any chelate or SlowMag helps muscles and nerves. Magnesium is used in the mitochondria of each cell for energy production. It is very essential.

Studies show most Americans do not eat enough foods with magnesium in them. If you get SlowMag-- 2 of those a day is usually enough. Aim for about 1/2 the RDA (200mg elemental) of magnesium from chelates, to start. Chelates are citrate, gluconate, glycinate, lactate, malate.