Is it reversible?

[Gunj_redjem]

I have had serious brain damage in 2018.. since then I have been taking hydroxocobalamin injections my neuro said u must b fine till now as b12 deficiency is reversible but I’m not fine I daily hav some symptom I tried EOD shots but that’s making me v sick...pls suggest wat to do is nerve damage permanent?my brain MRI is normal

[EllieMayNot]

It is nearly impossible to know whether and to what extent recovery is possible. I am not a doctor nor a scientist but I do know that good nutrition is important. A lot of good studies on healthy Omega Oils and brain health. High sugar intake has been proven to be detrimental to brain health. Have you had a full nutrition panel run to see if you have other deficiencies? If I were in your position (and to a certain extant I am but apparently not as severe) I would continue with the injections. Oftentimes, we have to become our own health advocates. Hoping you see more improvement.

[Gunj_redjem in reply to EllieMayNot]

Right I need often injections but there’s a complication I need to reduce my b12 blood level from 2000 to 600 to carry a healthy baby...that’s making me anxious my symptoms might come back

[EllieMayNot in reply to Gunj_redjem]

Who has made this claim? I am not convinced that the information is accurate.

[Gunj_redjem in reply to EllieMayNot]

It’s scientificaly proven that higher the mothers b12 blood levels higher the risk of autistic child

[EllieMayNot in reply to Gunj_redjem]

I have actually read the exact opposite. Have you consulted with someone who is an expert in this area? High B12 with low folate can be a problem. Low B12 and low folate can be a problem. Please find someone very well qualified to give proper advice.

[Gunj_redjem]

My neuro told me so.. they studied in depth for me.. I’m worried how to lower my levels

[Gunj_redjem]

U can google this

[15beansoup]

I to have Permanente brain damage, but also told by neuro that I will get almost all back but that it takes yrs and yrs for the brain to heal once it has been injured. I don't know who is right anymore they don't know who is right. New studies all the time and everybody is different, example ( 2 men same age ht. wt. same treatment, get cancer, one makes it one don't, they don't know why, Nutrition, as EllieMayNot has said, is a big factor in all health and disease so many people have healed themselves thru their diet changes, this should say something about our food source and what we consume. Now as far as your baby, PA also can be hereditary, my mother had it, just saying everything I have learned so far I would have every shot I could, if I was pregnant, to protect my child, extra B12 in the body is passed thru the body everything we consume the baby consumes would rather my baby has all it needs than not enough its all just my opinion, but I am not pregnant and not my choice Please do as much research as possible and talk to the right people and it will still be your choice in the end. You are doing the right thing by getting as much info as possible I will be praying for you and your baby.

[Gunj_redjem in reply to 15beansoup]

What’s good nutrition for PA?im a vegan

[15beansoup in reply to Gunj_redjem]

mainly the worst culprit is Carbs, sugar etc...research any foods that cause inflammation also

[Gunj_redjem in reply to 15beansoup]

How r u doing now ? Hav u increased ur injections frequency?

[15beansoup in reply to Gunj_redjem]

not yet trying to deal with all the new stuff 3 fractured disk in my back I have full-blown DDD and now a diabetic I have to go to boot camp to learn a bunch of stuff and these muscle spasms are making me insane I only sleep 10 mins at a time allergic to sleeping pills I feel some days I'm losing it but try to stay hopeful lol

[Gunj_redjem in reply to 15beansoup]

God bless u... but believe me taking often shots will help u so much 😊

[15beansoup in reply to Gunj_redjem]

Thats what they tell me I feel no different from a shot I think I am so far down the pole it's coming back slow they keep telling me to be patient after all these years you would think wow I've never seen a person so patient

[Ritchie1268 in reply to 15beansoup]

I feel your pain!

I've had DDD in 5 discs in my back & 2 in my neck since MRI back 10/11 years ago.

I laughed at an article I read a few weeks ago where B12 is being tested to see if it can be used as an alternate pain relief. Funnily enough, after thinking about it recently, & being off all Opiates for pain relief for a long time now, although I still get bad days, my pain has eased somewhat since self injecting every other day since Xmas. Not only that, but mentally also (as being on very high dose Opiates for years messed me up big time mentally) Now, I've never felt better.

Hope you start to feel better soon.

[15beansoup in reply to Ritchie1268]

I to 3 yrs ago came off the pain meds although some days are so bad I wish I still had a few but also glad I am off them and your right it does cause more pain. What's crazy I kept reporting to them about all my falls and bumping into things and on and on and they did nothing till I acute PA full swing bat sh-t crazy did someone say there's a problem here, we might want to see what's going n they thought I had early-onset Alzheimer's. No just PA !!!

[Ritchie1268 in reply to 15beansoup]

I've read where people get wrongly diagnosed with MS & early stage dementia etc, then to later find out it's a B12 deficiency!

And yet many still say, "oh it's just a little vitamin, what harm can it do" 😲

[15beansoup in reply to Ritchie1268]

Thats because people have no clue neither do Dr.s, nurses, lab techs, its shocking to see it in action they don't call this the devil's anemia for nothing

[Buckley123 in reply to 15beansoup]

Sorry to jump in but this post interests me.

My mother died last year of ms

Two months later I was diagnosed with ms as they found lesions new and old scarring on my brain.

I have pa and b12 def.

My ms diagnosis was taken away after my lumber puncture was negative. I know have a 1 in 10000 chance of it being ms which is great 👍

Do you think these scars and lesions could be caused by b12 or pa which I have both.

Thanks sorry again to wade in xxx

[Ritchie1268 in reply to Buckley123]

So very sorry to hear about your mum.

If you start a new post Buckley123 I'm pretty sure someone with way more experience on this will comment way more than I can.

[Buckley123 in reply to Ritchie1268]

Thanks I will do xx

[15beansoup in reply to Buckley123]

sorry for your loss!! for starters, if you have PA you automatically have B 12 def. I am concerned about the lesions on your brain. Do you have a neurologist that you like and trust? You must get an early diagnosis when it comes to the brain always the earlier the better and if they said no ms what did they tell you it was ??

[Buckley123 in reply to 15beansoup]

Oh I see

I was diagnosed with pa about 6years a go now but I kept missing my injections because I didn’t think it was a big deal and I was busy it wasn’t explained to me I was just handed a leaflet via the gp that’s it.

I’ve been told that it could be pa damage in rare case.

Other possibility are lupus or lupus like uctd mctd could be aps could be but unfortunately my bloods are not playing ball all negative again which can happen in 5-2% I think of people. 🙄

Yes I do have a neurologist dr Kidd at the royal free and rheumatologist dr de Cruz at guys

I have my 2nd brain scan next week hopeful for no change in the last 9months

Just hopeful it’s behind me and possibly b12 x

[15beansoup in reply to Buckley123]

scarry stories alike I wasn't even-handed a leaflet, for 20 years on my physical my dr. would come in and say your B 12 is low we need to give you a shot the first 4 yrs once a yr I took the shot never a discussion after that each yr the same and I said no that shot hurts and I don't even understand what it does, I don't feel anything from it, they would say ok walk out and put Pt. refused with no discussion of what it was for or the damage it could cause until the day Houston we got a problem for years prior to that I kept reporting all these symptoms, what a rollercoaster ride ! So glad you have another MRI coming up be aggressive with Dr.s to get to the bottom it's not their heath it's yours

[Buckley123 in reply to 15beansoup]

I know it’s like they shrug it off if I even new it was autoimmune considering my mum I would have acted a lot different I just didn’t read into it with 3 children one with issues and a mother needing 24 hr nursing care a job a house general life I just missed them until I felt I would collapse. Now I have one via go every 6-8weeks and one in between privately which is what I would have done if I knew!

Oh trust me I’m a doctors worse nightmare my mum was only 47 when she passed I’ve been dealing with doctors all my life I take no prisoners xx

[15beansoup in reply to Buckley123]

Awesome !!! I couldnt imagine trying to handel all that sick YOU ROCK !!!!

[Sasla]

Hi Gung

Nerves can heal, I had VITAMIN D deficiency for several years without knowing it was causing my varied symptoms & peripheral neuropathy in my legs. I started Vitamin D sprays & many of my symptoms improved. The nerves in my legs & feet, which were numb, & very painful!, are slowly but surely healing & sensations are returning. Been 2 yrs now, I reckon PN will gone in another 6mths. Don’t underestimate the huge importance of VIT D & the wide ranging seemingly unconnected symptoms. Effects everywhere! Best to use Vit D MOUTH SPRAYS if you gave absorption difficulties, you should find improvements starting within 2 weeks.

Good luck Gung.