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Hello everyone....I have a had aB12 deficiency since 1999.My symptoms were extreme fatigue,pins 'n needles feeling in my fingers and toes,difficulty eatting/swallowing sometimes,confusion,very weak in arm/hands/legs/feet,sore/red/glossy tongue,unsteady walk,dizziness...I think that's about all of them.I have a complicated,hidden B12 deficiency.My levels get borderline-low and the hematologist found that my methylmalonic acid level was sky-high which points to a hidden B12 deficiency.So I had shots for almost 2 years and then I was told to get them 3 to 4 times a year,but I didn't,because our insurance plan wasn't good.Then 5 years later I was depleted again...so now I'm getting the shots monthly,but I have some irreversible nerve damage now because of being deficient for so long.

I still feel tired most of the time though.So I don't understand why I don't feel energy from it....

I have been getting monthly shots again since February 2007 and I just started to get my level up to a fairly decent number.

Have a good week everyone.

Scout~
Hi all
Ohhh B12 deficiency what a trip!
I started not being well 5 years ago & it has taken that long to be diagnosed as the drs (all 9 of them ) kept telling me my levels were normal...I was getting symptoms at 372.....It had to get to 130 and serious symptoms before my new dr had his suspicions and tested me.......The uMMA (more sensitive than the serum MMA) & homocystiene tests are very important as they will pick up a deficiency if your levels are normal the levels really need to be upgraded normal is different for all and anything under 550 can present symptoms you should also get tested for Red Cell Folate....
I have come te experience that the type of B12 is crucial indeed...Here in Aus we normally treat defiencies this way Hydroxocobalamin injection everyday for 7days then breaking down to just 1 every 3 months that will work on correcting blood problems like PA but you will not get to much other healing.....Hydroxo needs to be converted as does Cyanocobalamin (one I would aviod all together) to Methylcobalamin and Adynosedylcobalamin (i havent spelt that write) I was having Hydroxo injections with not much help my new Dr treats it differently and rather aggresively I now have Methylcobalamin injections of 10,000mcg 3 x a week for 3 months then we will go down to 2 ect I also take sublinguals 5000mcg everyday and multi vitamin and folic acid...Folic acid is a crucial cofactor for B12........I was really ill with numbness and pins and needles memory loss, extreme anxiety ,elctrical like pains in my body, vision problems, foggy head,fatigue,positive for rombergs (fell over all the time when I closed my eyes) couldnt walk well in the dark, couldnt talk properly (by now my husband was getting really really concerned)........I was told that most of my symptoms because of there duartion would stay with me,,,,,,,but that is wrong I have no more numbness or back pains ect.....My stomcah issue were the first to heal I can think clearly have great energy ect I have had 17 injections and big doses as you can see but I am healing & I know i have the Methyl & my doc to thank for it....Methyl is the active form of B12 so it does not need to be converted and is taken up more into the cells....

Some peolpe I know also needed ADB12 which greatly improved their energy levels......My doc said I was low in folate so I neede supplements but it is crucial when having B12 injections as they work together and large doses of B12 can pull down the folate this works a treat for me I take one with my injections....

I feel that docs pay to much attention to lab levels if you have been having injections and the levels go up which they will most of it is just circulating and not used anyway and the say oh lets just give them to you every month this is not going to heal damage done it is just not enough the healing takes a while and you need to saturate the system with it...If one is still having the symptoms you must address it more than 1 per month even if the docs say no you can treat yourself with the sublinguals using methylcobalamin.......

I am living proof that healing can take place and I know of plenty more some who ended up in wheelchairs because of the deficiency

Happy to help with any questions

Good luck all
Hoppy......do you have pins 'n needles feeling in your fingers? Just wondering,because that's a definite low B12 symptom...also cold hands.Sorry you are having such a rough time....I have a PPO insurance and it's not that good either...it's a shame that drs. have to let the insurance companies decide what tests are allowed or not......not fair!

What I was trying to tell you before was that sometimes drs. will order more tests if you tell them you have a close relative that say had an "in range" level for a B12 test,but still had low B12 symptoms so their dr. ordered the other tests that go along with testing for "an occult B12 deficiency(meaning a "hidden" B12 deficiency).If you have a copy of your B12 test from the lab does it say what the "normal" range is?The lab my dr. uses says the norm is 200-1100...mine was in range at 278 when I ws first diagnosed in 1999,but the blood dr. said when it's below 400 they do a methylmalonic acid level test,because anything under 400 usually points to a hidden B12 deficiency.I know I've told you all this before,but really your level is not that good.

I wish your dr. could run that other test,but unfortunately I guess that's not going to come about.As far as your calcium level goes I would think the dr. would keep an eye on that one.

When my ferritin was 11 my dr. put me on iron pills...even though the range started at 10(being the lowest number in that range)...so it's plain to see that your calcium is just a hair away from being out of range.......

Scout~
hi again.....I'd ask your dr. exactly what your B12 number is and what the range is(most labs say normal is 200-1100)......if you're below 400...symptoms start to appear...under 300....well that's where you start to Really have symptoms and feel like you have MS!!!!

My symptoms at 222 were>weakness in arms/legs,pins'n needles feeling in hands,confusion,cold hands/feet(not being able to tolerate colder temperatures),loss of fine touch(couldn't hold change in my hands),fatigue,loss of appetite,sore tongue,food didn't always taste right,nervousness,numbness anywhere,unsteady walk,dizziness...think that's about it.

Good luck!

Scout~
Hi RainbowsEnd.....I decided to post on the anemia board to you,seeing B12 is discussed more over here.Hope you find me here!:)

I wanted to ask you how your platelet levels are.Mine have always been borderline low,but they picked up since getting the B12 shots.They are at the low end still,but better.

As far as repairing the neurological damage goes I noticed I have less back problems now.I used to feel this penetrating weakness down my whole spine,but seems to have gotten so much better in the last few months:)Do you have back pain/weakness or did you have it before?Just wondering.

Once in awhile I get the pins'n needles feeling in my fingers or a slight numbness,but not bad like it used to be.Also I used to have a lot of pain in my shins,but that is gone now.

I still feel the weakness in my hands,arms and legs,but it's less than it was.I noticed that the blurrines is less now too.Before I would be watching television and I would look away and the colors would seem to hang on.

Anyways I hope you are feeling well this week.....I'm so happy you have so much good advice about B12...you are soooo helpful to everyone here...thank you;) Scout~





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