How much time nerves take to repair - Pernicious Anaemi...

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How much time nerves take to repair

Gunj_redjem profile image
10 Replies

17months back I was almost bed ridden with tremors,fainting spells, brain fog, dizziness, bad memory, bad migraines etc etc couldn’t even get up from bed... thn I was diagnosed with b12d... since then I’m in regular injections...but still not recovered...I still m in bed most of the time Dizzy, neurological symptoms still there can anyone pls pls tell how long it will take to be at lest somehow normal.. as I’m just 32 and feel like 80+ My brain mri is normal

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Gunj_redjem profile image
Gunj_redjem
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Nackapan profile image
Nackapan

No one really knows Just keep going. Nerve repair is slow . If you go to the gym now you are doing really well . Just pace which takes patience.

Gunj_redjem profile image
Gunj_redjem in reply toNackapan

Gym I have left as I’m unable to do after 2months.but don’t know y m I fatigued, weak..etc don’t know could it b migraine medicines side effect?

Nackapan profile image
Nackapan in reply toGunj_redjem

Perhaos you tried to do too much. Easily done. I think we feel if we push through we can get back to 'normal' it doesn't work and sets us back. I think it's human nature to try and shoes we have a positive attitude life. Sounds like you have to go with ther flow for a while. Medications csn and do have side effects. It's weighing up if you get a benifit overall.

At the moment the less I try and do the less headaches I'm hoping with patience is csn then do a littke more .yesterday I tried but my body said no. It's difficult. A member of my family younger than you has taken years to pace to be able to do more. It is very frustrating . Take care

montague53 profile image
montague53

Hi Gunj_redjem,

I too had very similar symptoms to you and was in bed for 3 months at one point, neurological problems too, unable to walk properly, I honestly thought I was going to end up in a wheelchair. I was taking 1mg injection every one to two weeks and not making much progress at all. I then upped my dose to 1mg hydroxocobalamin every second day and started to see a real difference. I still felt that my memory was still very poor so started to take 1mg of Methylcobalamin plus 1mg Hydroxocobalamin every second day. My memory improved and I seen much more symptom improvement all round. I make sure I have a B complex and extra folic acid and keep my potassium in check and I have been making much more progress than before. I think some people really need more B12 as they are not absorbing or have genetic problems. The methylcobalamin definitely helped improve memory and neurological symptoms.

Gunj_redjem profile image
Gunj_redjem in reply tomontague53

How much time did u take to improve ? Did u have migraine also

montague53 profile image
montague53 in reply toGunj_redjem

It was slow at first, more energy, then my stiff legs started to feel a bit more normal and the cramps stopped. Hardly any tingling left just in my face around my nose and mouth. No more tremors. I have very little dizziness left and can walk much better and for longer. I still have a long way to go because I have spinal degeneration but I am seeing really positive signs that I am healing. I have been taking the double injections of Methyl and Hydroxy x 1mg each, every other day for 2 months and the improvements are really good. I think it depends on how long you have had B12 deficiency for and how much neuro damage you have. I have read for neuro damage anywhere from 6 months to a year and a half, but I'm not sure. I don't even know how much will heal or what deficits I will be left with, but I feel really blessed and fortunate I can do the injections myself. At the beginning when you just start doing the injections you might feel that there is not much improvement at first, but you have to persevere and in time you will start to see them work.

pvanderaa profile image
pvanderaa

I found lying in bed didn’t help me either as I typically felt worse the more I slept.

Getting up is the hardest but I found gentle exercises to stimulate the nerves really helped. I’m not talking about strength building exercises at the gym but range of motion exercises like tai chi or a walk or swimming and just getting on with the physical work.

Mental work was pretty much impossible at the beginning but a neuropsychologist doctor told me a few ways to exercise the short term portion of my brain was to play mahjong or solitaire type games where you have to remember things over a few minutes. This really helped my brain recovery.

I’ve been on the following regime for the past 5 years and things are pretty stable.

Cyano 1ml weekly which I split in half and take 0.5 Mondays and Thursdays. GP won’t prescribe more frequent injections.

Folic acid 4.8 mg daily - 6x 800 mcg tablets that I split into 3 doses of 2 tablets morning, noon and night.

4x methyl sublinguals 5000 mcg that I take two with the folic acid at noon and at night.

100 mg B1 daily at noon

100 mg B6 daily at noon

500 mg trimethylglycine (TMG) at noon

And a multivitamin at noon.

I’ll also fill in with extra methyl sublinguals before meetings to clear my head.

I still have long nerve damage in my hip which I concluded is permanent.

AirAl profile image
AirAl

Hi Gunj. I had pins and needles in my fingers and legs, MS hug, occasional nerve temors(?) in my legs, severe fatigue, and brain fog at the peak of my symptoms. I have two herniated disks in my neck and am accustomed to finger numbness which delayed my diagnosis... that and being a stupid male. B12 diagnosis occurred at that time, 18 months ago. Soon after that I sourced my own B12 and was self-injecting, because I didn't trust my U.S. doctor to dose me sufficiently. I also pay a lot less injecting myself.

By one month after injections started energy improved and pins and needles improved. By a year pins and needles were about gone. 18 months later (now) my only noticeable symptoms are very slight numbness in my fingers (but I can type and button all my oxford shirt buttons).

MS hug has been the most stubborn symptom and it still persists. The MS hug plays hell with my golf game because despite being very flexible, I still feel stiff in my torso. I feel as if the MS hug might be permanent but if anything it's still getting slowly better. Fingers crossed.

Don't under-dose. Good luck to you!

Gsmandin profile image
Gsmandin in reply toAirAl

I just discovered that I have had MS hug for several months ... was confused as to what caused it and hoping it wasn’t MS. Have been self injecting for a couple of years and this symptom just popped up??

zorrotenov profile image
zorrotenov

Hallo. I was diagnosed with peripheral polyneuropaty at the beginning of 2017. Pins and needles, brain fog, could not walk alone. B 12 was 50 pg/ml. Doctors prescribe 500 mcg per week. After one month without any progress i began self injecting 1mg every week, than 1mg every other day. Still now i have more than 400 shots. Much improvements now, about 60 procent. Now i am playing tennis on court. I hope the improvements will progress more. You have to do exercises every day. Be patient and hope. Wish you success.

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