Hello all. I have a similar story as most about being misdiagnosed for years even after many visits to my doctor. But thats history. I am now on injections of b12 once a week because my level was low. The doctor said "less than 74" what ever that means. I have had six shots so far and if anything I might feel the same or a little worse. Doc says it takes time to notice anything. My question is when did you all start to notice improvements. My tongue is driving me crazy with a constant burning and soreness. I am dealing with all the rest of the typical symptoms but the tongue thing is getting the better of me. Some one please tell me your tongue got better after injections. I think I might cut it out if I have to live with it like this the rest of my life. J/K. thanks and talk to you later <74

Hello its me again. Its been a week with no replies. I guess either no one with b12 anemia has a sore tongue as one of thier symptoms or they do but didnt get relief from the b12 injections and have no good news for me. Thanks anyway I will keep looking for an answer. <74

I'll give you a guesstamate here, because when I was diagnosed I couldn't even stand on my own without assistance, coupled with the brain fog I'm really not sure how long it took. I'm pretty sure it was within 6-8 months for the mouth to heal, and my smell and taste to come back. My levels at the start were 126. That was in April of 2002, by that summer I was getting around on my own with a walker. I still have problems with balance, but now I use a cane and if I'm not going to cross a street or there are no obsticles then I can get by on my own. I can't walk and look around at the same time.I can't carry much either because the extra weight throws me off balance. There was a time in which I seemed to hit a platau and didn't think I'd get better, but that was only for a few months and I've been improving steadily since. Alot of it is not so much that I feel better, but that i suddenly notice that I am.Like just last week I realized that when I'm standing I can bring my knee up about waist high. My husband just asked me if when I give myself a shot do i feel a surge of energy. I told him that no I don't ,I never did, but I know that it is working because I notice things are better.
The bottom line is I never realized how sick I was until i started getting better. My thoughts and prayers are with you, I wish you the best of luck.

Thankyou so much for the reply. Sorry to hear you were affected to such a degree. I am very happy to hear you are slowly improving. My test came back at <74. I assume that means the scale starts at 74? I had a fundoplycation surgery in 1996 and I think that caused all of this. I complained of almost all the symptoms over the previous 5 years to my doctor but never as a group of symptoms which might have clued him in earlier. Even though I was at a lower level I was able to do everthing I needed. It was getting harder though and I could not get through a day with out a nap. One symptom I never got, thank god was the ballance and walking problems. That must be scary. Did your vision suffer? My eyesight has gone down really fast and I was wondering if b12 affects this too. My doctor has handled this whole thing non-chalontly(sp?) and tells me each week when I go for a shot to be patient. Problem is I feel like I may even be getting worse, if not staying the same. Its been 7or8 injections or weeks now so I guess based on what you said I am still a while away from noticing improvements. Ok gotta run. thanks again <74

I started having vision problems (just some blurriness) just prior to getting diagnosed. That actually corrected itself right away. I never really saw this coming. My husband says I wasn't quite right for a few years. I've been treated for hypothyroid for 20 years and in 2001, started feeling funky. In Nov. of 2001, I was diagnosed with severe iron deficiency anemia and from that time til April 2002 my health deteriorated rapidly. The more I think about it , the more I think my problems are autoimmune.

hi there hearing your story and others makes me realise me and you are not alone.
i have injections every 12 weeks now and have been for the last 4 years.
i've got to the stage now i can tell when ready as symptoms start to occur.
so there is light at the end of the tunnel.
some of the symptons like pins and needles numbness feet etc do improve eventually and you'll get to no when you need b12.
i had it for long time b4 been diagnosed and thought i was going round the bend. hope you feel benefits soon good luck

You are right. 74 is the bottom end of the scale. When I was tested I had no detectable b12. Problems can become much worse that you have and you need to count your blessings. I was told for months that I was depressed and needed counseling. Meanwhile symptoms got worse and worse. When they started me it was 1 shot every day for a month, 2 shots a week for a month, 1 shot a week for a month and then one shot a month. My burning tongue didn't last too long but it took over a year and a half to see all of my improvement. When your B12 is low enough you have degeneration of your whole nervous system so just try to emagine the symptoms. I think you should have been started on bigger doses of the B12. Many doctors do not ever see a case of bad Pernicious Anemia or Subacute Combined Degeneration and I do not believe know and understand it that well. My Dr.s said they had never seen a case like mine before.

Hi all, Its been about 5 months now and still little if any improvements. I do feel like I am not getting worse though. One interesting thing I need your opinion on. Through all this my folate has been roughly 3 times what a normal count should be. It has risen with each blood test. Heres the kicker I am an extremely fussy eater and the only thing on the list of foods that give us folate that I eat is the occasional orange. I realize many foods are fortified but I defineatly dont intake enough to raise my levels from normal. Any Ideas? thanks. <74

Hi all, Its been about 5 months now and still little if any improvements. I do feel like I am not getting worse though. One interesting thing I need your opinion on. Through all this my folate has been roughly 3 times what a normal count should be. It has risen with each blood test. Heres the kicker I am an extremely fussy eater and the only thing on the list of foods that give us folate that I eat is the occasional orange. I realize many foods are fortified but I defineatly dont intake enough to raise my levels from normal. Any Ideas? thanks. <74

Are you only getting B12 shots? Maybe you're in the minority who don't convert B12 into the usable forms! Cyanocobalamin is not the form found naturally, or actually utilized by the body. The 2 co-enzyme types are methylcobalamin and adenosylcobalamin (aka Dibencozide--the name you'll find in supplement form). Your doctor may be WAY behind the times (unfortunately like so many others) when it comes to B12. Oral (actually, sublingual) supplementation DOES work. Studies prove it, but most doctors still only know about 30-year-old data. It does raise the blood level of B12 as good as, if not better, than do the occasional shots. The key is to take at least 1000 mcg every day. The best type to take that works on the brain and the nerves is METHYLCOBALAMIN. The other, dibencozide, works at the cellular, energy level. A health food store should have both kinds, if not you can order from the internet. I don't know if I'm allowed to tell of an internet source or not on this forum, but the one I use is less expensive than my health food store, and for only a $20 order, shipping is free and fast.

On another message board I frequent (that has much more B12 knowledge being shared), there was one lady who had to have a B12 shot every 4th day to function. When she found the message board and learned of methylcobalamin, she bought some and started using it at the time of her last shot......and it's going on 4 weeks now and still hasn't needed a shot. She was obviously one of those that didn't convert the cyano-B12 from the shot. Not that it'll be your miracle, like it was for her, but hey.....

As for your high folate. I'm not sure, but maybe it's what's called a "folate trap"? If I remember correctly, you have plenty of folate but it is trapped because of inadequate something-or-other (I think methylation is the term, but not sure).

Good luck to you.
Tab

Thanks for the advice Tabs. You were right about my doctor. He only uses cyano. I went and got some methyl 1000's, one a day. I have been searching for some good info on the high folate but not getting anywhere fast. I did read that high folate can occur when you have low b12 because folate needs the b12 to get absorbed or something like that. Thing is my b12 is up now due to the injections and my folate is higher than it was on the first blood test. It has increased on each of the five blood tests Ive had. And I still have anemia symptoms. I want to find out if I am or not absorbing the folate... as this could explain why I dont feel much better after nearly 6 months of b12 injections. Anybody have some good info on folate absorbtion? please.

Something strange happened, I posted and it didnt go to the top. Im trying again.

Why didnt my reply take this post to the top?

:bouncing: I'm so happy to finally find other people that have PA. On the other hand I'm so sorry that you have PA,because it can hurt so bad!People who don't have it just can't understand what it's like to have the top of your feet feel like you poured boiling water on them. Or feel like your walking on hot asphalt.My fee never ever got cold.My first symptom was the hot asphalt/sand feeling.Drs. looked at me like I was crazy.I had this burning for 6-7 yrs.It took a referral to a podiarist ,who sent me to a neurologist that ordered tests, and WHAMO! I was diagnosed.My b12 was at 170 so shots 1xa week for a month, then 1x a month. My M.D has'nt tested me since last Aug. he says it's not necessary to test anymore than that.So tomorrow I'm going to call my Neurologist and see what he says. Thanks for just listening.booemmy

You might want to try the Benfotiamine type of B1 (thiamine). Thiamine deficiency can cause "burning feet"......and a lot of times, deficiency in one of the Bs can lead to deficiencies in the others (causes them to get out of balance--same can happen when you supplement with one B for too long and not also take the whole complex....I think B12 is the exception?).

I was B12 deficient, but also needed the whole slew of Bs. My feet "buzzing" is worse when I forget to take the benfotiamine (I thought I was getting enough thiamine through my B-complex).

Also, between shots (B12), you might want to try taking at least 1000-2000 mcg a day of methylcobalamin and/or dibencozide (the 2 co-enzyme types of B12 actually utilized by the body--doesn't have to be converted). Even with lack of IF, a body can passively absorb some B12 if given a high enough dose, consistently over time (studies show). People who do this don't usually experience the "low feeling" they get as their B12 shots wear off while waiting for their next one.

Good luck.
Tab

hey, Tabs I have a ? for you. I started taking 1000 of Methylcobalamin 2x a day last week. All of a sudden I don't have any pain in my feet, but I now have the Jerks,arm, leg or whole body jerks(not at the same time,thank heaven) and my right hand itches terribly at night.The methyl. could'nt have started working that quick, so what happened? I also know that I still will have pain from somewhere. I'm so confused about this, and I can't see my Neurol. until June 15th. If you or anybody can give me any ideas or advice I would sure appreciate it. Thanks in advance. Booemmy :wave:

Hi B'emmy:

Gee, I don't know what to make of it. It could be a "healing crisis". As nerves heal, I suppose they could do some weird things like that.

Are you taking Magnesium? Most diets are deficient in it, and it's needed in over 300 enzymatic reactions in the body. Mg is very important for muscles to relax, etc. If you decide to supplement, be sure and research the absorbable kinds. Mg oxide, the most common and cheapest is the least absorbable. Mg glycinate is a good kind, but there are others. You could use Epsom Salt baths (Mg sulfate)--2 cups to a tub of very warm water and soak for at least 20 minutes several times a week. Studies show that this can increase Mg in the body.

One thing I recall reading in all my B12 research is that when B12 repairs are being made, the body draws heavily on its stores of iron and potassium. I've needed extra potassium for awhile now. I don't know if that might be related to your jerks or not, but you might try eating a couple of bananas a day (or handful of prunes or some blackstrap molasses). I use potassium chloride as a salt substitute to get extra potassium into my diet, along with bananas (the pills are pretty worthless, each only containing about 2-3% RDA of potassium).

Good luck! Hope you're feeling better soon!
Tab

:bouncing: Tabs THANK YOU I post here and on another board, and you gave me some information that I had'nt heard before.My drs. both neurl, and md don't know very much about PN,so these boards are my only hope of getting correct info. again thanks ,b'emmy :wave:

It's funny you mention that other board. I just now saw your posting on it before coming here to your reply. It's really so helpful. I've been reading/posting there for over 2 years now. I tried telling people here about it, but that's not allowed. However, on the other board, you can tell about any board you want and give links....ah well. At least you found it. It's a wealth of information. Good luck.

Tab