Oh my gosh - two years of weekly injections?! Was your B12 extremely low, or do you have trouble with the pill form?

I was able to get a neurology appointment for tomorrow! Here's hoping I don't get lost on my way to this clinic...and that I get some answers. My legs are feeling very weak and shaky at the moment. Like they're made of jello. Arms are a little funny as well. I feel sort of giddy, too. Got the giggles on my drive home for no reason and had a hard time stopping.

You've come to the right spot, with knowledgeable and compassionate people.
Most of us have symptoms similar enough to yours, that we can relate.
While I agree with the need to visit a neurologist, etc., my experience was that it was expensive, painful, and ultimately useless. The medical establishment seems intent on placing numbers on things, billing insurance companies, and relieving symptoms; mostly at great cost to kidney and liver health.

There are several potential causes for the nerve damage. Increasingly, there is awareness that the hybridization of wheat, combined with the FDA pushing a "healthy whole grain" diet, has greatly increased the intake of gluten, which is a poison. Most people can tolerate a certain amount of gluten, although I don't believe it's healthy for anyone. Many of us have increased sensitivity to it, and eventually have symptoms. In my case, I believe the gluten burned out the receptors in my gut for B vitamins. I've been gluten free for a year now, have lost 50 lbs, and while I still have symptoms, and expect I will for some time to come, I no longer take any pain medication. A year ago, I could hardly walk, and was living on large doses of Ibuprofen, knowing I was killing my kidneys.

Does this have anything to do with you and your symptoms? Probably; but maybe not. Its a possibility; the wonderful thing about sites like this is learning the possibilities.

My B12 levels were OK to start with. This dose of B12 Shots were for theraputic levels. It is worth it to get some relief. ginnie

Had my neuro appointment this morning. Again, symptoms are burning, throbbing, and tingling throughout both feet, a sharp stinging/burning pain that comes and goes in the bottom pads of both big toes, painless muscle twitches in both feet and legs, and very weak feeling legs. Like I just ran 50 miles after getting over the flu – that Jello-like sensation of shakiness that isn’t even relieved by sitting.

Doctor did some tests to check my balance and any possible numbness/loss of sensation (I don’t have any). Asked me if I had any trouble with balancing, bowel movements, losing consciousness, feeling numb on one side of my body, slurred speech, and so on. Told him I was very fatigued and I had had two episodes of stomach upset since my symptoms returned with a bang, but that was it. His conclusion was that he did NOT think my issues were of neurological origin. When I asked if we could do a B12 blood test (and possibly other vitamin tests, like D) he said no, and that it would be a waste, because he believed if I DID have any vitamin deficiencies, he would have detected it when watching me walk back and forth, touching my nose, pricking various parts of my body, etc etc. He said he could do an MRI of my neck if I really wanted, but I postponed that, as I’m sure it’ll cost an arm and a leg and may be totally useless.

The issue I had with my hands 2-3 years ago with the burning in both palms that morphed into aching and a painful spasm along the muscle running vertically beneath the pinkie is slowly returning (the pain, not the burning). My hands are aching a lot today – had to keep rubbing them at work. Hence why he said he could do a neck MRI – he said an issue that effects both the hands and feet would originate in the neck.

He never mentioned PN.

Like all the other doctors I’ve seen recently about my severe clavicle and neck pain that started shortly after this problem with my feet, he talked about how young I was and how whatever it is would probably just spontaneously heal itself with time (although some of these symptoms have been occurring for 7/8 months now - the severity just increased in the past 1.5-2 weeks). At this point, I really don’t know what to do. I’m going to call my primary doctor tomorrow (who I’ve actually only seen twice– I’m a fairly new patient), probably schedule an appointment, and ask if I can have some vitamin blood tests done. When I initially had this hand issue all those years ago, I remember they did a vitamin D test, but that was all.

Feeling extremely frustrated and a lot less hopeful. If it comes down to it, I’m just going to start taking the Jarrow B12 I ordered (5000mcg) and see if I improve. I’m not going to sit here twiddling my thumbs. I’ve been taking warm baths with (a lot of) Epsom salt, which provides slight, temporary relief, but it’s not a long-term solution. I’ll be sure to soak my hands in the bath tonight.

Are there any other key vitamins that it’s a good idea to “megadose” on when it comes to these issues? I also heard that megadosing on one vitamin can negatively affect the levels of another vitamin, or that it’s just a good idea to megadose on another vitamin that’s key to the absorption/support of, say, B12. Anyone have advice?

I saw Jarrow has a multivitamin, which I thought I would try. The multivitamin I took before wasn’t that great. If anyone has recommendations, I’m all ears.

Sorry that your neurologist wasn't helpful, COP. It's up to you whether you want to try to get a B12 blood test so that you have something to work with and compare to later, or whether you want to start supplementing now. You could always start supplementing and keep an eye on your body to see if you feel like its responding. Some people have results straight away, others it takes time to repair the damage.

I think because you ordered the 5000 mcg pills, it might be a good idea to break it in half and take half a tablet each morning, because it might be a lot for the body to handle after being deficient for so long. Because you will be flooding your body with B12, which will then be using a lot of potassium to repair the body, you might want to eat a lot of potassium rich foods, such as baked potato and bananas. You might also want to take an iron supplement (ferritin) to help with any weakness that you're having. Fish oil would be a good idea so that it can help repair the nerves.

Personally, as tempting as it is, I wouldn't take a multivitamin. You will have a lot of different vitamins competing for absorption and in some cases it can affect whether vitamins are absorbed at all.

Your symptoms sound a lot like what I was having, so I hope you get your B12 soon.

Keep us updated.

The trouble is, I'm on spironolactone (for my skin), which is a potassium-sparing diuretic. I don't think I'm actually supposed to take potassium supplements while on it.

Hmm. No multivitamin? I have a few dietary restrictions (plus, I'm a picky eater), so I don't feel like I'm getting enough vitamins.

I might just leave a message with my doctor's nurse tomorrow, see what she says.

COP, if you can't take potassium supplements, are you allowed to eat a few more potassium rich foods?

If you can't take the potassium supplements, then just keep an eye on your body's reaction to the B12.

Once you've gotten your B12 under control, you can always look at taking a multivitamin at that point. You might feel a lot better after correcting your B12 that you feel like you don't need a multivitamin.

Forgot to mention, the neurologist told me he thought what I was experiencing had to do more so with muscle inflammation than nerves, but that doesn't make sense to me, seeing as Naproxen has no effect on my symptoms. Not even the hand pain, which you think it would help take care of. And I've been taking 500mg of Naproxen twice per day for a little over a month now (for my neck/shoulder).

What does it feel like to you, though? I've had muscle pain before, and massages helped, but with the pain I was having this year, it felt like something else was going on - it felt like a nerve problem.

Compression stockings on your arms and submerging your arms in cold water might help until you can start taking some B12.

The fish oil might help with inflammation, as well as healing the nerves, if inflammation is your problem. Having said that inflammation is a very 21st century problem, because of our diet. Cut out all sugar, try not to eat wheat, eat lots of vegetables and listen to your body.

Jarrow's B-right is a nice formula, and is balanced and not in the "mega" category ...Alot of people on NT have used it successfully.

I'd definitely start with magnesium supplements since you see some improvement with the epsom salts.

SlowMag, twice a day provides 1/2 the RDA for a good start.
It is available at WalMart for about $10 for a month's supply.

You can choose any chelate you like, however, and aim for 200mg elemental daily. Some PNers here find magnesium extremely helpful. (avoid products with magnesium oxide, as the oxide form is not absorbed and is used as a laxative).