[phidias81]

Hello, it's the first time I'm writing in this knowledgeable forum.
My story. I will start with the past, and at the end write the symptoms that I have now. I'm Italian, so I hope it's easily understandable.
Everything started with pins and needles in my left hand and left part of the face, and I thought it was because of the position I was having in front of the PC. But soon instead of getting better, the pins and needles started to extend to the rest of the left part of my body, and then even to the right. I was feeling numbness in my scalp, head, face, in my arms and hands, legs and feet, in my back, sometimes in my nose, my buttt and even to the tongue. The feeling was changing from one part to the other of my body, while there were some parts (left hand and face) that were more constant. The pins and needles sometimes were numbness, other pins and needles, other burning sensation, and usually get stronger at night when I lay on the bed. I had a lot of other symptoms: fatigue, pain to my articulations and bones, headache, flu like symptoms, difficulty to concentrate, lower vision to the left eye and sometimes to both eyes, tachycardia, short breath, nausea. Some days I had just to lay on the bed all day long because I couldn't do anything else, I had no energy.
One time at night I had a strong feeling of numbness at my tongue and feeling like it was extending at my thoat: it was like I couldn't feel it anymore and I didn't have control over it, giving me the impression of being suffocated. So I was getting scared and right after was coming tachycardia and short breath: a couple of times I had very strong attacks and I felt like I was about to faint or having an heart attack. After some mis-diagnosis and several blood tests, after one month of the beginning of the symptoms I was found B12 deficiency. My level was 127 pg/mL (normal 191-663). I have to point out that the level was checked while I was taking supplement of Folic Acid (because I have Thalassemia Minor), that I read can influence the B12 value. Folates value in fact was > 20 ng/mL (normal 4,6-18,7).
So I did 8 injections (days 1,2,3,4,11,18,25,32) of B12 (cyano) 1000 mcg, B1 100 mg, B6 100 mg
Around day 15, I also started to take sub lingual pills of B12 Methylcobalamine 1000 mcg. I've never stopped these pills, and I'm still taking now, once a day in the morning empty stomach.
After starting the injections, my conditions got initially worse, and after 15-20 days started to improve. All the symptoms never disappeared completely, but I reached a moment where I was feeling quite good energetically, and I was having only numbness to my left hand and left part of the face (where everything began). But then i started to get worse again.
Now after 4 months from the beginning of the symptoms and 3 months from the beginning of the treatment, some days I'm in acceptable conditions, and I can even go cycling a couple of hours, others (like today) I can't move from home. The main symptoms I'm experiencing now are still the pins and needles (less than the worst period but still present), tachycardia and short breath, that are more constant than before, even if without the peaks I had earlier, and weakness.
I did also a Nuclear Magnetic Resonance of my brain, that was perfect, no Brain degeneration was visible, and neurological visit at the hospital.
I never had panic attack before, no depression, I'm not nervous, I don't suffer cervical pain, Magnesium and Calcium levels were checked and are ok, I have no diabetes. I've been Vegetarian (not vegan) for the last 3 years, and never supplemented before B12.
So after this long story, I'm wondering if it might be possible that after 3 months of treatment my life is still so bad? Can it be only B12, or should I search for other causes? In particular according to what I read in internet, B12 deficiency can give pins and needles, but usually limited to feet and hands, while for me it was much more extended all over the body since the beginning.
The Nuclear Magnetic Resonance of my brain, is enough to exclude Multiple Sclerosis, or should I do more tests?

Now I did more blood tests, but I'll have the result only in 3 weeks. I'm checking again b12 + homocisteine, folates, several types of Iron, celiac disease, Vitamin D3 (25oh), anti corps to check b12 absorption. I also was once again 2 weeks ago at the emergency, one day I was feeling very bad. And then also a visit to hematology. But still I didn't solve anything.
Any help? Anybody in the same situation, or somebody that can give me some clues? Thank you very much! Davide

[mrsD]

Welcome to NeuroTalk....

I am cloudy on what is going on in your life... when this happened.

Did you get a vaccine, were you ill with a virus or infection, do you use prescription or recreational drugs?

How old are you...do you smoke? Your hobbies, job, etc.

Some left sided symptoms may trace back to the heart. Do you have mitral valve prolapse? Did you have a complete cardiovascular work up?

Exposure to pesticides, insecticides, or solvents in your private or work life?

You really need to go back to the beginning and look at everything you do, eat, consume or touch. Something made your B12 very low... are you still doing whatever that was?

[phidias81]

Originally Posted by mrsD

Welcome to NeuroTalk....

I am cloudy on what is going on in your life... when this happened.

Did you get a vaccine, were you ill with a virus or infection, do you use prescription or recreational drugs?

How old are you...do you smoke? Your hobbies, job, etc.

Some left sided symptoms may trace back to the heart. Do you have mitral valve prolapse? Did you have a complete cardiovascular work up?

Exposure to pesticides, insecticides, or solvents in your private or work life?

You really need to go back to the beginning and look at everything you do, eat, consume or touch. Something made your B12 very low... are you still doing whatever that was?

Thanks for the naswer.
I'm 31 years old, I don't smoke, don't use drugs, nor alchool. I wasn't sick, and I wasn't using any medicine (I used a natural colon cleaner made of herbs for a couple of months, before the symptoms came). I don't do any dangerous work, actually I'm usually travelling low cost around the world and stopping sometimes for temporary jobs.
Vaccines not now, last time was 3 years ago, when I got maybe 6-8 vaccines before going to India.
As far as I know I had no problems with my heart, except heart murmur when I was a kid.
About my B12 levels the only clue is that I'm vegetarian, but it shouldn't be a problem because I eat eggs and dairy (not much), and also I guess Injections and pills should have brought it back up (i'll see for sure when I'll have the results of the blood tests). Maybe also Thalassemia Minor could have an influence.
About the heart I still didn't do anything, except electrocardiogram 4 months ago that was normal. Maybe I should check more?

[boogirl85]

are you taking any type of magnesium at the moment?

I take 2 tablets of amino acid chelated magnesium each day (equiv. of 100mg elemental magnesium x 2 - one in the morning and one at night). If I don't take it, I get tightness of the chest. I also have b12 related tingles of the back and it feels like paralysis. Everyone's b12 symptoms are different. Do not take oxide magnesium.

Some people after starting b12 get low in potassium because the body is using up all of the potassium stores to repair itself. The symptoms of that are arhythmia, feeling like you might faint, dizzyness etc. That happened to be 3 days after starting b12.

Even if you've read otherwise, vegetarians are really likely to be low in B12. I don't think you can get b12 from the dirt in vegetables. But people who eat meat can still be low in b12. But it's just something you will have to keep an eye if you are not going to eat meat.

B12 takes a while to heal itself. Your level of 127 is really low, and it will take time for your body to heal itself and also to get your reserves up. You are flooding your body with b12, but it takes time to repair the damage.

MS is usually ruled out by an MRI scan of the brain. Are you also able to get a spinal scan too? Sometimes, in less than 10% of cases, people are diagnosed with MS without brain lesions (by getting a spinal tap, for example), but those are rare. Your symptoms really sound like b12 deficiency to me, but it's important to rule out MS too.

I've been to the emergency department too. Most drs, especially at emergency really don't know what to do. I've been told that I have a mental problem or I'm anxious, but it's the lack of b12 that is making me anxious. Drs don't understand that. They try to cure you as quickly as possible even if the diagnosis is wrong. You have to take charge of your own health.

Try to get a copy of the book "Could it be B12?" by Sally Pacholok. It has lot of stories similar to yours.

[phidias81]

I'm not taking magnesium now, I was taking it 4 months ago, and when I checked the levels 3 months ago, it was ok.
I also read about potassium, and I was thinking to supplement it by myself. But then I saw that unlikely B!2, high potassium can have side effects.
Last time I checked it 3 months ago it was ok, but that was before starting with b12 supplements. I'm trying to find some vegetarian or vegan neurologist, because all of the other doctors don't take me seriously

[mrsD]

Tests for magnesium only are useful for very low or very high results. The in between range does not reflect what is IN your cells.

You can try soaking in epsom salt baths....if this helps, it points to needing an oral supplement (oxide form does not work).

Vegetarians also become low in zinc. The phytates in veggies complex zinc out of the food, and prevent absorption.
So a zinc supplement may help. OptiZinc is the easiest to tolerate. Zinc sulfate causes nausea in some people.

Vegetarians also become low in methionine, which composes SAM which is a methyl donor for many body symptoms. Methionine is an amino acid found in animal sourced foods.

Vaccine injuries are becoming more common. They have adjuvants added to them, to stimulate the immune system, and some people have genetic sensitivity to this, and over-react, causing autoimmune reactions. 8-9 vaccines sounds like alot to me!

Also going to India, you could have picked up a parasite. Tapeworms specifically rob B12 that people consume, and hence they become severely low all of a sudden. The eosinophil count in the blood CBC will sometimes be elevated if parasites are present, but not always. Parasites typically have biochemical ways of eluding the immune system and can appear invisible.

The range you were given for your B12 is the old outdated one.
400 is now considered the lowest normal. You may have to take a higher dose (5mg orally methyl B12) for a while to bring up your results. You should be using the methylcobalamin because you don't know (without a specific DNA test) if you can activate (methylate) folic acid and B12 in the body.

Very low B12 can affect the heart. So it is really important to discover what caused your very low level...and fix that. Be it diet, poor methylation ability (MTHFR polymorphism genetic failure), drug use (acid reflux drugs or other specific drugs), genetic inherited pernicious anemia, etc. I am not familiar with your Thalassemia..that I would expect a hematologist to be monitoring (as well and the low B12).

Here is a video just posted here recently on what low B12 can do to a person:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

This is my B12 informational thread:
http://neurotalk.psychcentral.com/thread85103.html

It is long, but has many medical links on it so try to read it eventually. The first 10 posts have most of the useful links and the rest is conversation and discussion.

Check out that heart murmur... as mitral valve prolapse can sneak up on a person.

[phidias81]

I wanted to test also my Zinch level, but I still wasn't able to find a Lab that is doing it. In India I was 3 years ago, it looks like a long time ago, to have the effects now, but maybe it's possible.
About the Methyl B12, unfortunately it's not approved in Italy. What I have now, I bought when I was abroad. And even shipping it it's not working, because if they find it, they block it at the custom. The maximum I can find is 2000 mcg of Cyanocobalamin from Long Life brand.

[phidias81]

I just finished to watch the movie about b12, and the main question I have it's basically still the same. All the symptoms I have looks like could be connected with B12 deficiency, but also on the movie, even for extreme cases, they were talking about numbness and tingling only for limited part of the body or limited extension of time. In my case pins and needles are more widespread along the body, and I think in the last 4 months It wasn't even a single moment that I wasn't having it, in the best case some numbness in left hand and face in the worst strong feelings or burning in a big part of the body.

[Lara]

Hi Davide,
I don't usually post in the PN forum, but came across your messages in the New Posts section yesterday. I just wanted to post an article for you. It is a number of years old now too and may not be helpful but I'll post it anyway.

I hope you are seeing an Haematologist.

http://www.actaneurologica.be/acta/d...4/07-Bilic.pdf
Masked deficit of vitamin B12 in the patient with heterozygous
b-thalassemia and spastic paraparesis
Acta neurol. belg., 2004,
104, 173-175

[mrsD]

iherb.com ships to Italy:
http://www.iherb.com/info/international

In India they call methylB12 mecobalamin. We've had people post here that their doctors give it to them orally there. India has
a huge problem with low B12.

Ask a chemist in your area of Italy, if only RX is available there from doctors. There are people in UK who import it from iherb, and they are in the European Union as well.