Hello
I'm still in the process for a formal diagnose..ive wrote my story back in February..anyway I'm 4 months into this.I have done nothing to warrant these kind of symptoms im a 30year old male with no previous medical conditions..ive had the usual work up mris blood test,nerve conduction test..my symptoms are just in my hands tingling/stinging but I also get this annoying twitching through out my body.Im on here because I've had a few periods of minimal symptoms and recently flares..i do think my symptoms have got a little bit better I think...Can someone please reasure me it's not doom and gloom like the internet says..my Neuro says "my symptoms will get better in time" as I'm fairly young.Just need some opinions

Your symptoms sound similar to mine, only mine are more profound in my feet and legs. My head is where I feel them second-most, and then my arms and hands.

I'm going on 5 years now, and the symptoms have not worsened. Consider taking high quality fish oil as Omega 3s are neuro-protective.

Also, check to see if you feel better when you consume a lot of water and are very hydrated.

Thank you for reply..yes I'm taking omega 3 fish oils with other supplements

This post have over 80+ views..but only one person has replied,this is supposed to be a support group surely someone with experience or even someone like me who's new to these symptoms can reply back..by helping each other May be we can get some relief

Have your Vitamin d and b12 levels been restored? I noticed in your original post your B12 was low, even though your doc says it's not, it is. At your age, it should be higher. You may want to list the supplements you are currently taking. Also, what nutritional testing did you have done other than Vitamin d and B12? What medications are you taking, both prescribed and OTC? Are you a vegetarian? A more complete picture of your situation can be helpful to the group and may prompt more suggestions.

Hi Marlene thanks for the reply...like I said in my orginal post they have said my B12 levels are normal..only vitamin D levels wer down I'm taking prescription vitD tabs I'm also not diabetic checked and all good...also I'm taking a complex B supplements omega3 fish oils,pregablin.No I'm not a vegetarian..i never catch colds or flu,this was so sudden and out of the blue...my nervous system went completely out of whack...will this ever get better??

A low normal b12 of 392 is suspect IMO. In light of the fact that you have symptoms and low normal B12, I would consider addressing it. Like I said, you are very young and should have a more optimal B12 level. Spend some time reading the B12 sticky posts at the top. B12 serum testing is probably the least effective way to test for B12 status. Looking at homocysteine and MMA would be a better indicator.

Regarding Vitamin D. Prescription Vitamin D is usually D2 and not an optimal form. D3 is better and can purchased over the counter. On a side note, we always take our D3 with K2 to help prevent the calcium from being misplaced.

I would look at adding in magnesium as well.


If you get a chance, watch this on B12. Diagnosing and Treating Vitamin B12 Deficiency - YouTube

I am currently on 20,000 D3 twice a week...I do think my B12 levels are low as my younger brother who’s 23 had a blood test recently and his levels are 780 compared to my 392..but any of the 3 neuros I have seen have not even considered this and said it’s fine...my next appointment is in July so I’m not sure what I should do in the meantime

Hi Shak2388.
First I don't have the same situation as you but I do share that I have no diagnosis and it's scary. Second I am glad you wrote about no responses just views. This forum used to be a very active one but from what I've seen it appears to ebb and flow over the years. I disappear for months at a time. Then there's the people who seem to just look for information and if the post doesn't give them that they move to the next. Regardless, I'm sorry more people haven't responded and I can certainly relate to what you wrote about that.

I just read your other 2 posts. One suggestion is start meditating to handle your stress. I'd also start keeping a journal. Write down the supplements you take. if you add a new one see how it effects you. Also your diet. Sugar, alcohol and caffeine seem to anger nerves and effect many members of the group. Gluten sometimes also. If you can find a pattern to your flares it would be great.

It is possible you had a severe reaction to something. I know a girl who got Ciguatera from eating spoiled fish. Her symptoms lasted 6 months and started like yours, although the ones you describe now are not the same as hers.

I hope this helps.

You can restore B12 on your own. For most it's as simple as taking a separate bio-active B12 supplement like methyl B12. But it can also get complicated. I don't have the time right now to get into it but will post back.

In the meantime, look at your current B complex supplement to check what type of B12, folate and B6 are in it. For many, the least effect forms are the Cyno B12 and folic acid and pyridoxine.

Pinkynose's advice regarding record keeping is a good idea.