Low B12, symptoms, confused

[CaptainHypochondriac]

I've been in and out of specialist clinics for the last 7 months now trying to figure out why I have muscle fasciculations in all these random places. I get it in the sides of my hands, up and down my legs, sometimes my back and my chest. Sometimes it's like an electric zap feeling, other times it just feels like someone is pulling an invisible string quickly to make the muscle move, it's very uncomfortable... I also have deep pain, perhaps in my bones because I can't find the pain spot in my muscles, but places like the thumb abductor were searing in pain on and off through the day.

So far all of my blood tests have come out completely normal. The only clues I have are a TSH which is at the bottom of normal(0.5 within the range of 0.45-5.0mlU/L) and B12 which is low normal 235.77pmol/L. My vitamin D is 34.5 which is also at the low end of normal.

After I got the last results with B12 in it(had to really insist with my GP to do that test...), I started taking 1000mcg once a day of B12 in the morning just to see if it would make any difference. The pain mostly went away and the fasciculations reduced quite a lot! But my GP said I don't have any B12 deficiency after seeing the normal blood work and the low normal test range for B12.

I'm confused. What should I do from here? I'm tired all the time, often off-balance a bit when I walk, and I have geographic tongue and pretty bad seborrheic dermatitis along my nose and eyebrows. Also if I drink the night before, the fasciculations come right back with a vengeance the next day.

[Nackapan]

I alsi get muscke cramps over my skull face and neck. Glasses feel like they are clampedal ti my head on a vice. I'm toldoing ongoing chronic tension headaches now we're migrains. Up your vitamin d. I did this off my own back as Gp unconcerned. Ivery got the leveks uo to 73 and it's really helped the headaches. It was 21 at one stage thrn I gory stUckfield at 51. You can get functional b12 defiency symptoms. What was your level?

Have you had ferritin leveks checked. Folate ect.

My ferritin levels dropted for some unknown reason. Trying to uo those with difficulty .aiming for 50-80 ng/ml. The 'normak levrk' a huge range.

When I was well the leveks was 61 now 29? The symptoms you explain sound familiar and like nerve pain or damage.

I'm off all alcohol. As the oral b12 helping keep taking it. Only thing is don't have an active b12 or serum b12 whilst taking it . Keep a log to take to Gp.

[Nackapan]

What specialists have you seen?

[Nackapan]

I think the description of "an invisible string pulling muscles ' so good. It's the tightness i get in my cranial nerves and it causes suxh tightness and sometimes pain. . Nuchal muscke group. Akso vestibular disturbance can cause this.

[Nackapan]

Keep hydrated. Not enough water makes my symptoms worse.

[Nackapan]

Remember Zanox is a muscke relaxant too. Only used for anxiety in higher doses. That's why it probably works. I've been prescribed Diazipam in sam e group. Not used it yet. But will if desperation. It's highly addictive. Not that the Gp told me that. !! Seen your b13 level on old post. If b12has helped you just might be one of those people that gets symptoms on higher levels. Why don't they trail a loading dise of injections ?? Or if you can have a break from b12 get an active b12 test done ?? At least b12 isn't a nasty drug to trial . It's horrible not knowing full what's going on. I have the same. 3 neurologists disagreed. Lots of theories but seemingly not many solutions

[expatkerry in reply to Nackapan]

Hi there, I'd just like to take the opportunity to warn you against Diazipam which I was prescribed when I was very ill with PA but doctors missed it, they thought I was just another hysterical woman. It took me months to wean off, which were extremely difficult, . Highly addictive is no exaggeration. I wouldn't touch this drug again.

[Nackapan in reply to expatkerry]

Thanks . I've been prescribed it as the muscles in my neck and skull so tight. Gp gave me no warnings. Ive been prescribed many drugs ive not taken. Clonodine. Sertraline , propranolol difficult time getting off amitriptyline. I will nrver toch tjis drug agsin. A few other I can't remember names of. I'm losing faith in the honestly of what theses drugs can do on the negative side. At times though I really struggle with the pains in my head and skull. Due a B12 injection tomorrow hope that carries on working.

[EllieMayNot]

I am not a medical professional so this is not medical advice. Personally, if I were in your shoes, I'd continue taking oral B12 since you have had good effects in doing so. Since B12 blood tests are often useless as they do not indicate cellular levels, it is often advised to go by patient response to supplementation.

The main point with B12 supplementation is to determine what works best for each individual.

Hoping others can chime in on the D3 and Thyroid numbers you posted. All I know is that my GP wants my D3 level over 60 and she tests for my 25-hydroxy vitamin D level.

[lidoplace]

Your low level TSH doesn’t tell the whole story - you could get ft3 and ft4 ,active hormone testing to see if thyroid is a contributing factor. Do you take thyroid hormone ?

[CaptainHypochondriac]

I had my T3 and T4 checked and they turned out to be normal, T3 was 5.56pmol/L and T4 was 14.72pmol/L, so I guess I have to look elsewhere from that. I had an earlier T4 and TSH test done and my TSH was 0.44 and T4 was 19, but seems to fluctuate. My MCH is 27.3pg(26-33) and MCHC is 32(31-36), MCV 85.2(76-97). I'm assuming this is totally normal. Not sure what else to look for, but definitely if I haven't drank any alcohol and no caffeine, and if I take B12 in the morning, the twitching / fasciculations and pain reduces off a lot.

[Hidden]

Have you been tested for PA? I also was in the low-normal range and having a ton of neurological symptoms. It was this article that alterted me to the dangers of the "low normal" zone:

chriskresser.com/b12-defici...

I was later diagnosed at the Mayo Clinic with PA & SIBO, a GI condition that causes absorption issues. I have not yet seen a neurologist, but I would like to just confirm that there's nothing else going on. I have the same kind of muscle pain/fatigue that isn't cause by any muscular "soreness".

[CaptainHypochondriac in reply to Hidden]

Not yet, but I have an appointment with a new neurologist next week who specialises in neuromuscular conditions. I'm hoping this one can identify what's going on, or at least point me in the right direction. The fasciculations and muscle pain are really distracting at work and frustrating...

[KirstyDC300]

Apologies for being off-topic but I’ve just found that going gluten free has cured my geographic tongue so I’m letting everyone know that mentioned GT in case it helps them too

[CaptainHypochondriac in reply to KirstyDC300]

That's interesting. I want to go gluten free for a month but it's almost impossible where I live. Gluten finds a way in almost every single dish here, and my wife refuses to deal with it if I try doing gluten free at home. The closest I've managed to getting a diet change at home is going dairy free, and even then it's hard to maintain it when my wife loves eating so much dairy and insists it gets into everything we cook. Sigh... It really really sucks having digestion issues.