So worried its als

Hi Heather  can I ask how are you getting on with your B12  levels.  Four months ago I developed constant pins and needles in my toes on my left foot which has spread to underneath of foot and I get fluttering feeling up left calf. Its been constant but worse in past 3 weeks. When I wear flat shoes I get horrible prickling in arch of left foot and have to wear tight lace up shoes - am guessing muscles struggling as heels easier to walk in and I have a vague feeling or having to lift my left foot more when I walk. Had MRI of back thorax no pinched nerve  brain scan  all bloodwork and next week am having MRIs and brain scan re-done and a check on spinal fluids. No Neuropathy or MS. I am Vegan (although take supplements and fortified foods pretty regularly)  and was looking at my blood results done back in September showing B12 at 282. Also thyroid at very low end. Have read hypo thyroid can lead to low B12.  Am due to have B12 injection tomorrow which I hope I dont react to (seem to have allergic reaction to a number of drugs - blurred vision dizzyness etc). Taken a couple of B12 supplements ug and got a few red spots and slight itchy throat (which I am going to ignore in the circumstances) No one has mentioned B12 deficiency as I am in range.  I am 46 and to date hoping problem hormone related but dont think so the numbness (without losing sensitivity) and pins and needles are too strong and constant.  No pain generally although have had a few sharp pin feeling pins in top of toes but only half a dozen times or so. Really worried Ive done some irreversible damage.     Anything you can add would be very gratefully received.  Am feeling very stressed symptoms arent helping.  Had a very difficult year two family bereavements and more and brain MRI - neurologist said MRI showed probably AV fistula in artery - after 6 weeks of sheer terror and a cerebral angiagram turned out artery was normal just slightly larger than average but no problem but whilst good news the numb toes persist!!  

Tracey

Hi Tracey a b12 level of 282 is on the low side. Do you know what your folate level was? A low folate can cause falsely high b12 serum level. Your symptoms are typical of mine. Do you also have balance issues. Eg standing with your feet together and arms relaxed by your side. Close your eyes, do you sway about? I can't do this as I sway about. I suffer bouts of tinnitus too. Fatigue can be debilitating. Yes, hypothyroidism can be linked to low b12 too.

Once receiving b12 injections it is impossible to know accurate levels as the injections cause a false high b12 serum result. Inactive b12 fills up in the blood from injections. Unfortunately the b12 serum test measures both active and inactive b12. The b12 then uses your folate to become active and enter your cells. It is very important to have a good folate level for the injections to work efficiently. I have a monthly injection as my symptoms worsen after 3 weeks. I also take a daily b complex to help my other b vitamins.

Hi Heather  thank you so much for responding to my message; I really do appreciate it.  Ive felt so isolated and rather down over the past 4 months whilst a myriad of neurological tests and scans have been carried out which have showed up nothing and it transpires it could be that the cause has been deficient B12 levels.  Unfortunately as the normal range is said to be 150-883   with mine at 282 (in September) I appeared to be ok so far as my GP was concerned. Its probably dropped further since then. It seems crazy that other Countries have a lowest acceptable level of 500 and the UK 150!  Looking backing I am surprised no one asked if I was vegan and I didnt make the connection as I eat a generally good wholefood diet albeit lacking in B12.  I have over the years taken a multi vit with B12 but Seven Seas stopped making the Vegetarian version so I got lax and havent taken any for a number of months. I am now eating eggs and dairy which is strange after ten years of being vegan but I have to get well.  I am going to try and get nurse to give me a B12 blood test tomorrow morning before the B12 injection so that I know what my current readings are. Back in September when I got out of bed the toes on my left foot were tingly - its now alot worse.  Over the past 4 weeks the muscle issue in my foot appeared and of the last few days I feel dizzy and my eye sight isnt right and Ive felt exhausted in the morning (just not like me)  Infact Ive felt abit 'unreal' the past week.  When I close my eyes I do sway abit.  Im so sorry you are experiencing similar symptoms - I cant believe I didnt make the connection sooner.  I was only as I recently asked for a copy of my blood result test that I started scanning the numbers and looking stuff up on the net.   My folate level is 12 out of a range of 3.1 - 20.5 so that would seem ok.  I am just keeping my fingers crossed I dont react to the injection and Im not sure where I would go next if this did occur.  I seem so sensitive to the chemicals and carriers in certain drugs.  I have started taking Vit B Complex (50 ug) once a day and I thought my odd feelings were down to the tablets but Im now wondering if the deficiency!!  I bought today Solgar methylcobalamin 1000 mcg and might take one today to see if i react - I understand its the cobalt that people can react to and its doesnt appear to be any way to avoid this (let me know if you know of any please) Can I ask how long you have been having the injections?  I am assuming your B12 levels are increasing on the injections.  I am also wondering if it matters whether the B12 injections given a false reading as its the B12 thats in your body that matters although I can understand that you wouldnt know when to stop the injections - perhaps I am being stupid and not understanding the point. I have also realised that my low thyroid reading of 0.56 means I am hyper and not hypo - am going to have to research things to find out what I need to do in such regard as the Thyroid function test range there is 0.35 - 4.94.  sorry for long rambling message but so much to say!!    many thanks and best wishes Tracey

Hi Tracey. Any form of b12 supplements can cause a falsely increased b12 serum result. You may find that the injections may intensify symptoms and this is normal. This is your nerves wakening up and healing. It is good you are taking a b complex too as this will help your other b vitamins. I would suggest you take some more folic acid to help your injections. Just 400mcg per day will help. It will take time for your healing to complete as it can take years for the damage to be done. You are on the path to recovery. You may need b12 injections for life. Not all vegans have a b12 deficiency just due to diet. It takes up to 4 months for an accurate b12 serum result after stopping b12 supplements.

Ps. Your tsh is ok. Ask for other thyroid tests, free T3 and free T4 along with antibody thyroid blood tests.

you can ask heather be very lucky to get , all they have ever done on me is the very basic tests that always come back ok .

i have fibro ,  iv noticed that i am extremly tired just recently normal with fibro .

but as far as i concerned slow hair growth on the legs and under arms is not

,iv shaved both about twelve weeks ago and i have a bout 2days growth. i showed my accupunturist this and even she said god i get that much after a couple of days . but no joy with doctors said it was my age and hormone change ,stupid me thought it got worse at menopause .if anything. i give up with doctors.

I really do appreciate your replies Heather - many thanks.   In particular its good to hear that if my symptoms worse after a B12 injection not to panic - I have heard that nerve re-grow (if damaged) at the rate of a fingernail so not to expect too much, too soon.  I just wish Id made the connection earlier.  I guess we have our NORMAL RANGE to thank for that.  I certainly will take the folic acid you have suggested and have the additional thyroid tests done particularly as I am at the very low edge of the acceptable range.  thanks again Heather - youve made such a difference to my day!!!

Hi, im still feeling crap. My mri came out woth an enlarged pituitary gland which ive had more appointments for. Ive completly forgotten about als as it was a pretty stupid fear as it is pretty impossible for me to get which i wish id of realised instead of wasting 2 months on this fear.

Obviously my fear has moved on to adrenal cancer due to symptoms of that and an enlarged gland.

Just a viscious cycle that im always in which sucks. Also the mri was reassuring as its actually come back with something

Aww im sorry to hear that. Im still here struggling with muscle pain grrr whci is everywhere and muscle twitches which are less now but the muscle pain is so annoying as i finished uni ladt year and started a new job and is so hard to cope...i wonder if it will get worse in time or better?! ☺️

How r u doing these days??? X