I had tears when i read your post. thank you so much for you explicit symptoms. you are right we are not alone. i feel the same as you do.

I have been taking 1000cc of b12 every 4-6 days for about 2 months and also have been taking Carafate. AFter my 12 lb weight loss and no desire to eat, I do have an appetite, although not like before.
10 years ago i was diagnosed with acid reflux and was given Prevacid for those 10 years. No Dr. discovered my Celiac Disease, nor did they ever check my b12 count. i am certain these issues were prevelant at this time. however, i managed to get better until about 3 months ago when i completely shut down. My b12 count was 140, i had atrophic gastritis and pernicious anemia and celiac disease. luckily i have 2 very good doctors -Dr. Fayad and Dr. Milne and they put me on b12 injections immediately. But, the one dr. told me to do it weekly for a month then monthly. There was no way i could stay on that regimine of b12. thank god i read many posts and am just listening to my body. i have been able to last 6 days without an injection. so far that's been the longest.

I am going to try the Methyl b12. See if i have a better response. My recovery has been very very slow. When i got the diagnosis i thought the shots would relieve the symptoms. but that is not the case. i am a little better but anything was better than what i was before.
Went to the ER got the heart completely checked -all was good.
My symptoms:
heart palpitations-at night especially
anxious
shoot shocking feeling in my stomach when the phone rings or with loud noises
numbness at the back of my head
numbness at the bottoms of feet, hands, arms, legs
back pains, neck pains, arm pains
wake up at 1am 3am 5am.. hard time sleeping
depression
eyes sensitive
dizziness
walk very slow unbalanced
hard to focus
afraid to drive

These symptoms were so bad before Now i have them but they are less-days are bad and good. i just want my old self back. i want to feel like i did before. I have been cooking cleaning, walking, yoga and swimming, and i drive sometimes. i am retired 67 years old, and am fortunate that i have a good family and i don't have to work.

I just wonder if there is anything else wrong with me.. its hard to believe that b12 deficency is the cause as well as gluten. i am on a gluten free diet, but am drinking milk. i have read that neuropathy takes 6 -12 months to come back.
Has any one come back completely and living their normal lives? I know this is not a death sentance, but some days it sure feels like it.

--though I'm sorry for the situation that brought you here--probably preventable too, if the doctors had been more curious and probing.

I would DEFINITELY start taking the oral B12 in mass doses--probably 5000mcg/day to start--until your levels go up. Even with pernicious anemia, that large a dose allows a 1-2% passibe absorption by the small intenstine that should bring your levels up gradually--I imagine you'll need major B12 dosing for a long time, and probably supplementation for life, to allow as much repair as possible (and that repair is likely to be slow).

See the response of Mrs. D to your other thread--which includesd links to the B12 threads (she explains this very well--why oral is the way to go):

http://neurotalk.psychcentral.com/thread132278.html

Hi. I just responded to your other thread. But I am confused about something in your post.

You wrote:

"i have read that neuropathy takes 6 -12 months to come back.
Has any one come back completely and living their normal lives? I know this is not a death sentance, but some days it sure feels like it."

What do you mean, that neuropathy takes 6-12 months to come back?

I have no idea what you mean by this sentence.

Thanks much if you can clear this up.

Melody

HI Melody, want wto clear up what I said about neuropathy coming back in 6-12 months. Basically, my symptoms include, blurry vision, unbalanced, dizziness, numbess in extremities-which all has to due with the neurological sheath that covers the nerves which is damaged by the lack of b12. this sheath actually acts as the pathway- the message system from brain to nerves. when this is damaged due to the lack of b12, these symptoms plus many others arise. Now the neuropathy-or this sheath-can rebuild itself with enough b12 in the system. This rebuilding takes a while.. now i am not sure how long, however, i have read and my doctor mentioned a time frame of 6-12 months.

Now i have been taking my shots b12 -every 3 - 4 days for 3 months and i have just started to feel a little better. I am not falling over, i am not numb all over, my vision is better and i can eat and sleep ok. howeer, i am not 100%. In addition, i am off gluten and wheat as well. so, this is not a death sentence. bu you have to be treated and you need enough b12 and you have to look at if you are gluten sensitive and if you are -don't ingest gluten at all. doing this will bring you back. it did for me.. but like i said. i am not 100% yet.. but if i keep this pace i feel that i will come back.

i hope that i cleared this up

Ah!! Now I understand.

Hope you can get your hands on Methyl B-12.

All the best

melody

--with large fiber nerves, the axons are still the pathway or conduit for the transmission of signals; the myelin sheathing covers the axons and acts as a focuser and insulator, keeping those signals moving at proper speeds and to proper destinations.

Demyelination will cause the axonal signals to degrade and become patchy, slow, or unreliable.


B12 deficiency can cause both meylin and the axon to degrade, though typically the myelin sheathing goes first--and the myelin is much more suscpetible to repair. If one gets to the point of axonal degredation, one has a much longer and more difficult road back.

Great!! You really did a great job explaining this. thanks

Making progress with my recovery. I have gotten Sublingual Methyl b-12 1000 mcg and taken this daily, and i have switched to the Methyl b-12 and am on the second shot. i have been able to go form shots every 3-4 days to weekly. Maybe this mnth i will be able to only take 2 shots a month.. but the most important thing is that i am listening to my body, and not my doctor. I don't know why doctors don't understand how much b-12 the body needs and it is not possible to overdose. So i have been taking as much as i feel i need and it's been working. I have am eating better, i am sleeping!! hooray!! i am not so afraid to drive anymore. My numbness is lessened. My eyesight is pretty good as well. So hang in there everyone. You will get better but you need enough b-12 You will know if you need the b-12. We did the same thing, i thought i would never get better. i would read these posts and say when would it happen to me.. but i had to take action. i ha to take the b-12, get off gluten-change my diet, and keep a positive attitude. You will get better too. You can recover, and thi is not a death sentence. it's just that we have to take some action and change our habits. Getting better!! Hooray

Thanks for the update... I am glad you are turning the corner.

You may have a genetic failure to methylate B vitamins. Folate is involved too. That is why the methyl B12 is working for you better. Many people have this, not just celiac patients.

Just keep in mind that you will probably have to use the oral methylcobalamin for life. Don't get "smug" and think you can now get by without it. That could just push you into a relapse!
This happens to many people....who think they are "cured" when they are not. If you have the MTHFR polymorphism you will need activated methyl B12 and methylfolate for life. This can be tested for with a DNA test... about $125.

I am feeling great! Finally I have turned the corner. For all of you who are just starting with your journey of pernicious anemia, it gets better. You have to listen to your body and you have to take weekly injections until you get better. My Doctors orignally told me to take it monthly. No way. I took my injections 3-4 days. This was because i was using the Cyanin Coblumin.. that onlly lasts in your blood stream for 3 days. After i got onto the Methyl, and on the sublingual (b12 under the tongue daily) i have returned back to myself I take Carafate as well. My life is back.. Have hope.