I was told I had MS for 20 years but now they say no, I had some numbness/tingling in my arms and legs, but for 2 days now I have severe tingling/numbness everywhere chin down, it's severe and really bothering me

PCP said maybe low b-12 otherwise she doesn't know why


Any ideas? I can't stand it

If it has been 20 years since they looked for a cause it may be time for a new run of tests. You have to love a misdiagnosis.

we're doing that, but it takes time and this is sudden and severe and hard to manage with

Welcome to Neuro Talk. I am glad you found this site. There are alot of people who experience this kind. PN, RSD, CPRS all of these neurological problems can take a while to diaganos. I would definately go see another neruologist for a second opinion. In some cases the sooner you find out what is going on, the better the outcome. I am sorry you are dealing with this kind of pain. I have NP in my left foot up my calf. No pleasant at all. I hope you can get the help you need. There is a search bar up at the top of the page, that can get you to any forum you want to talk to. There are seperate forums for all three of these issues, that will offer you more information. Again a warm welcome to you, I hope you can get some help. ginnie

Thanks Ginnie, I hope someone can figure it out, but right now it's been left so we'll see

Have you been tested for B12 levels. Also, blood sugar levels (a1c) and vit D?

I would find new doctors that will really find out and know about good blood testing.

she didn't re-do my b-12 in 2010 it was 345, my old doc said that was "perfect"

my vit D is low but not that low I was told 26 I think it is

I have low sugar so my a1c would be fine

345 is not "perfect" -- it is below the new low of 400 in US units.

I'd suggest 5mg of methyl B12... the active form orally on an empty stomach, daily. For 3 months and get retested.

The D is low too... 3000IU of D3 OTC daily may help raise you.

Of course you may have OTHER problems but these are obvious...so deal with them first.

I hope you can find a good doctor that understands these tests. Finding the very basic vitamin levels and getting them up is SO important. A first important step.

Get new testing and then have someone help you test again after being on the supplements.

You might want to read the book "Minding my Mitochondria" by Dr. Terry Wahls. She has a lot of good videos also. She helped her MS that was very bad with food and supplements. I am not saying it would cure everyone, but it is very important to get all of the micronutrients and vitamins and minerals that help the myelin and nerves grow and heal.

The doc didn't say how much of the b-12 to give in the injection so I did 500mcg. it says every 3 days.

I was told my Vit D and B12 were fine by 2 other docs and said "oh don't worry"

maybe not the cause of the issue but odd to do a test then ignore the result

the tingling is severe