New here...this seems to be a forum for me
 

Hello again :) Second post! This will be long, but I don't know how else to say it all...

I have peripheral neuropathy which started as carpal tunnel syndrome after the birth of my first child at age 30 (2001). Literally about 4 weeks after he was born 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. Cervical MRI done, had a herniation and bone spur at C5-C6 impinging nerve as it exited to go down my arm. Surgery for that done in 2005.

It got better, I at least don't have the SAME symptoms. 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). Of note, since I did read some in here first, I had a corneal abrasion courtesy of my 8 month old's fingernail that took flipping forever to heal and I had double vision for months afterwards. A second corneal abrasion 3 years later was also slow to heal and eventually resulted in removal of the cornea. Not fun. Schirmer's test neg.

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. Get pg again, and I felt great for the first time in years (aside from all the pg stuff). My hands didn't feel stiff, my rings weren't tight, just NORMAL. Gave birth, all nerves flared up again. Got told by my pcp that I was just 'holding the baby so much'.

5 days postpartum I had a bizarre episode where I felt like I was going to faint, shaky, etc. Blood sugar was fine (I had GD), bp was up. Had a doc appt anyway but when I got there these 'waves' of something were causing my HR to jump as well as my bp, like 140's HR and 190/100 bp. They called the ambulance and shipped me off to make sure I had no pg/post partum complications. Everything was fine. That was Aug. 2007.

This 'spell' has happened a few more times over the years, until just about 1 1/2 years ago it started happening a little more frequently. Switched docs a couple of times, went through meds for depression and anxiety, blah blah, I have to literally have one of those spells in front of a doctor for them to understand it, but anyway lots of work up done including nuclear scan for pheochromocytoma, thyroid, autoimmune (sed rate was a whopping 3), Sjogren's antibody, I don't even remember what all. NOTHING showed up. Finally got to see a neuro who did all his testing (ouch) including EMG and NCV on all 4 limbs and said I had neuropathy in all of them. Brain MRI was normal. Most recent neck MRI shows slight bulging above and below my fusion but no sign of cord impingement. EEG showed 'abnormal spikes on both sides of the brain' so we did a 3 day one and it had abnormalities as well. I can't pin him down on a specific dx, just that he thinks the spells (HR/BP/etc) are seizure manifestations and I'm now taking Keppra.

I do tend to eat a low carb diet but I'm being even more cautious right now esp re. gluten b/c everything has flared up significantly this past month where before I had been doing really well. 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.

We did the Whole 30 diet in November and that was during part of my 'feeling great!' time so I'm getting out of the holiday eating habits and back into strict 'food for fuel' habits, but so far it's not helping.

If you read my novel, bless you :heartthrob:

Welcome to NeuroTalk, Betsy.

I had the reverse events when I was pregnant. That is when my carpal tunnel became severe and disabling, and my blood pressure skyrocketed. But after delivery, I was much more normal. So I did not opt for the release surgery.
It turned out I had a goiter and hypothyroid after all, and ended on hormone in my early 40's.(years later).

Did you have testing for Hashimoto's antibodies?

Did you get antibiotics alot for infections then, like Cipro, Levaquin or Avelox. Or Flagyl ? These can cause neuropathy too.

Were you tested for B12? do you know the numerical result?

I was tested for B12 this past summer but I don't know the numerical value. All labs were 'normal', which included Vit D, testosterone, FSH, etc. I get some nasty night sweats so the ob was doing a hormonal workup. He said no signs of impending menopause, but I think differently LOL. I do not recall having those prescriptions, I honestly don't get 'sick' very often. I think my only abx in the past few years have been a Zpack here or there.

Don't think I've been tested for Hashimoto's. I've actually lost weight during the past 2 years, esp when things were getting crazy, where before I had slowly gained (post baby/weaning) so I usually don't think hypothyroid.

I tend to go 'autoimmune!' in my head, but nothing has ever tested out to support my theory. One weird thing that I've only recently thought might be nerve related is my sneezing. Heaven forbid I sneeze, b/c that will cause another sneeze and another sneeze and so on. Please for the love of god don't bump my nose b/c then I will sneeze. Squeezing blackheads near my nose can make me sneeze. Water in the nose is awful. Nasty sneezing fits. It seems my sneeze nerve is super excitable LOL

Try and get those B12 numbers... the lab ranges in US are outdated, and therefore lows are not flagged for the doctors.

They often just glance at labs and if nothing is red they don't examine further. Also many don't know the NEW range starts at 400. So you have to follow up on that yourself. If you are below 400 and in the US, this could be causing nerve damage.

Hashimoto's patients can go hypo to hyper and back again. Some of the people posting on our Autoimmune forum discuss this cycling back and forth.

Night sweats can come from hyperthyroid issues, but also from low blood sugars during the night. Try a snack at bedtime with some protein in (no more than 200 cals) and see if the sweats get better. Low grade infections, also, and possible elevated cortisol (PCOS), and parasitical infections.

Thanks so much for your time...I have called and left a message to get my B12 numbers...hopefully they won't balk. Also going to see if Walgreen's carries the b12 form you recommended in the b12 thread :) my hubby can bring some home and save me a trip!

Very few local places carry the methylcobalamin. They will have the inactive cyano form, but rarely the methyl.

The methyl has been around now for about a decade, but remains obscure for some reason.

I get mine from Puritan's Pride. I used to get it at iherb.com but with Puritan's sales it is so inexpensive. I did a trial on myself, with the 5mg daily for 3 months, and my test was at 1999. This was done by my doctor who pooh poohed it orally saying it doesn't work. When the results came back she was humbled!
You should take it on an empty stomach, for good absorption, however, and this is critical for success.

It works out to pennies a day, which has to be ironic considering how devastating it is to be low... it is the most inexpensive nutrient we use here, and it does the biggest most important JOB.

If your husband comes home with timed release--- don't open it and return it. This form is the worst to choose. I don't know why it is still around... I guess it sounds spiffy...increasing sales.
B12 is slowly and minutely absorbed, and slowing down its solubility means it will miss its designated spot in the small intestine. You want as high a concentration as possible at the intestinal wall at that site, not locked into a long acting matrix.
This is why B12 doses look so high. 1000mcg vs 2-4micrograms RDA.

I just looked at several Walgreens online:
http://www.walgreens.com/search/resu...t=B12&N=359441

Most of the products on that page to not even tell you what type of B12 is in the product!

If you have the genetic error in methylating B12, you will see no benefit from Cyano form.. And this error is common.
10-30% in US have it. This is why we cut to the chase and use only activated form-- methylcobalamin.

Welcome! Glad you are here, there are a lot of us taking great supplements and on a great diet to heal and improve the nerves. Great information here. Yes, Methyl B12 is best for sure. If you can find a great integrative/complimentary MD it would be great for you. Most doctors are clueless unless they have trained much more than med. school where they only learn about meds.

Thank-you again :) I read several of your posts in the B12 thread so I know I definitely want the methyl form. The pins and needles and stabs and tingles are about to drive me crazy so I'm willing to try anything... I did take the SL B12 several years ago, but I got pg not long after that and everything got 'better'. And then life... haven't taken B of any form in a long time so I know it can't hurt. I am taking a D3 supplement, but again, I stopped for a bit.

I appreciate your giving website/brand info. I will look that up right now. I just called dh so I could maybe get a jumpstart on it vs. waiting for delivery.

Thanks Sally :) Finding a doctor has been so hard, they all just think I am crazy/anxious/etc. I have a cabinet full of meds, most of which I don't take LOL I found the Jarrow brand methyl B12 5000mcg on Amazon w/prime delivery, so I think I am hooked up. I am also doing a mostly paleo style diet, perhaps allowing sugars/gluten/etc during the holidays is costing me a higher price than I anticipated. I never had a 'problem' before that per se, but we did Whole 30 and now maybe I am more sensitive/revealed a true issue? I don't know. I just need to be more functional.

Yes, too many doctors have no idea what do to unless an illness is easy to treat with medicine. That is a big problem. They have no idea how to use supplements and diet to heal. There are places to look for integrative MDs online in your area.

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. ;)

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

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.