Confused is it B12 deficiency or not? - Pernicious Anaemi...

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Confused is it B12 deficiency or not?

harrry0489 profile image
19 Replies

Hello,

One month back i was feeling spins in my head and after two days i thought o consult doctor. Doctor gave me multivitamin and spinfree tablet. I was feeling little bit ok with in 7-8 days but again after 1 week situation was worse for me. I was feeling movement disorder means when i walk i feel like my toes are not with me and i feel strokes while walking. Doctor told me that i am suffering from B12 deficiency and prescribed me 7 injections with anxiety tablet etizome as well as multivitamin. After 5 injection i cant figure out i am feeling ok or not. My concern is i checked my B12 test and the count was 433 and i think this doesnt come in a low term and i dont know should i change dorctor.

Problems i am facing

1 Spins in my head while walking

2 Numbness and shakiness in toes and hands

3 Anxiety

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19 Replies
clivealive profile image
clivealiveForum Support

Hi harrry0489

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly

.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

harrry0489 profile image
harrry0489 in reply to clivealive

ok thanks for your revert, tomorrow i will be getting 6th shot(injection) of B12 so lets see how i will feel after that. Dr prescribed me 7 shots so after that he will check the results.

Worst thing is shakiness of hands,Confusion,Mood irritation and this effects daily life. I wish this will go soon.

clivealive profile image
clivealiveForum Support in reply to harrry0489

If you are in the U.K. the protocol here is for "loading doses to continue until there is no further improvement" and only you can know when that point has been reached and hopefully your doctor will be aware of this.

However this is not saying "until all symptoms have gone" as some may continue for a while but are not getting any worse and it's at that point that you can go on to "maintenance doses".

The N.I.C.E guidelines are below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

RaJender9666 profile image
RaJender9666 in reply to harrry0489

do you have heaviness in you head harry0489??

harrry0489 profile image
harrry0489 in reply to RaJender9666

yes heaviness + blurry vision, little bit shaky hands

RaJender9666 profile image
RaJender9666 in reply to harrry0489

from how many days you are suffering and what is your b12 now??

i had treated with b12 deficiency 5 months ago now level is 650.but still anxiety is not going away.using etozolam and valance OD 250 tablets.

harrry0489 profile image
harrry0489 in reply to RaJender9666

i am suffering from this problem from last 1 month and my B12 was 438 when tested.

RaJender9666 profile image
RaJender9666 in reply to harrry0489

ok are you able to drive your bike or vehicle and iam unable to drive bike or vehicle..

harrry0489 profile image
harrry0489 in reply to RaJender9666

No not yet will try after 1-2 weaks later

SusanLMckinney profile image
SusanLMckinney

If you have been tested and they know you have PA and once you have nerve damage you have what's called subacute combined degeneration. You must stay on B12. Your symptoms sound correct. It takes a long time to heal, but you should have many loading doses to get your liver count back up as it is stored in the liver. If you are worried, you can always take sublingual 5000mg a day. My levels were undetectable when found, but once on the right dosage, my healing was sssslllloooowwww (slow) but steady, but it takes up to and over a year before you know how completely you will be healed if you have nerve damage. But you should be seeing slow steady progress, but it will be slow.

harrry0489 profile image
harrry0489 in reply to SusanLMckinney

Thanks for your revert, So this movement issue means i feel little bit swings while walking so is this common in B12 deficiency ?. Tomorrow i will be getting 7th shot of B12 so lets see how i will feel. When my test was done my B12 count was 433 and people says it is very normal you should not be getting B12 shots and i should go and take consultation from orthopedic and they will go for a nerves test and spine as may be due to spine issue i will be facing this movement disorder.

harrry0489 profile image
harrry0489 in reply to harrry0489

So after getting 7th Shot(Injection) of B12 i am feeling little ok. My anxiety is less infact i am not feeling any anxiety right now and my balancing problem while walking is also little controllable now i dont feel swings while walking. I do feel lil bit fatigue as i was a hardcore gym lover and still doing exercise at home as i am unable to go to gym from last 3 weaks. I feel weak,confused & slow and heaviness in eyes as well as my vision is little blurry, Feeling weakness in legs. These are the symptoms which i am feeling right now, tomorrow is my appointment with Dr so lets see how it goes and what he will recommend next.

SusanLMckinney profile image
SusanLMckinney in reply to harrry0489

Nerve damage is slow to heal, that means memory, vision, balance, "EVERYTHING" Just watch for slow steady progress, but remember SLOW. Blood abnormalities should be a little quicker.

RaJender9666 profile image
RaJender9666 in reply to SusanLMckinney

May I know the no.of months approximately??

SusanLMckinney profile image
SusanLMckinney in reply to RaJender9666

I guess it would make a difference on the dosage you are taking to get those levels back up to normal. Once they are normal if you take more than you need your body will just flush it. My loading doses were large / many as I stated previously in a statement below. It all depends on how much damage and for how long you've had it. I continued to see improvement for over a year but I was a mess. Even after the loading doses, I continued to have short term memory problems for a few months. I couldn't remember names of people I knew and went to church with for 30 years. When I put faces with names, I felt like they didn't go together and couldn't remember calling them by that name. I stuttered, I had ticks, my nose twitched, my body vibrated, Just sayin' I was a total mess but I have had nearly complete healing. I feel normal. I can't tell you how long your healing will take but it is a slow process to completely heal if the damage is a lot. But keep those B12 levels up and you will live and you will improve dramatically. (if indeed your problem is B12) PS, PA with nerve damage used to be so rare people were put into homes for the insane. Now that many people have had stomach by-pass and use acid blockers they are seeing more of it but many doctors are in the dark. When I was sick in 2000, after someone finally figured it out, all the doctors I spoke to afterward like my gyn said they learned a little about it in school but he had never in all his life seen it. He asked me all kinds of questions and was very interested.

RaJender9666 profile image
RaJender9666 in reply to SusanLMckinney

how long it takes to get better from walking and head pressure and anxiety problems,i had treated with b12 deficiency 5 months ago now level is 650.but still anxiety is not going away.using etozolam and valance OD 250 tablets.

harrry0489 profile image
harrry0489 in reply to RaJender9666

I am not sure but u should take ur meal on proper time as well as add Vitamin reach food if you are non veg then try taking red meat once in a weak. Try doing little bit of exercise.

SusanLMckinney profile image
SusanLMckinney

To be honest, anxiety is different with different people and their own experiences. I was in such bad shape for so long, seeking help from doctors who wouldn't listen to me and wanted me to get counseling for depression, stress, etc. I was sure I was dying (and I was in the process) and felt they were going to just let it happen without looking. I have never been a drug user, never even been drunk or took the first puff of marijuana. ( I am LDS ) and don't even use Caffeine. I was so releaved that someone found out what was going on, my anxiety level went way down just to know I would live. But I must tell you, I think it left me with an abnormal fear of death and when I have any doubtful symptoms I am afraid it is something bad. That is something I never used to do and is different for me. It has gotten better over the years but I stopped having panic attacks almost right away. I never had head pressure, but I did have constant stress headaches from worrying before I got a real diagnosis. Even though your levels are rising, and even after they come to normal levels, your body has a healing process it has to go through. Nerve damage is slow to heal. This means possible memory problems, tics you may have developed, numbness, tingling, vibrations etc. They take a long time, and some symptoms may not go completely away depending on if the damage caused nerve death, but you will have lots and lots of healing. Life can and is good for me. I still enjoy everything I ever did, but you need to understand, if you had a bad case, it can take up to and more than a year for you to know how much better it can get. It was about 1 1/2 years before my last odd sensation went away, but I did have no detectable B12 and don't know for how long. Make sure you Doctor knows exactly how it is coming along so they can be sure healing is on course. I wish you well, Take care.

SusanLMckinney profile image
SusanLMckinney

I have already made up my mind, if I ever have any nervous system illness, I will doubly make sure the B12 is high. Lack of B12 causes you to loose the protective covering on the nerves and spinal column. Without it they get damaged and even die. Once nerve damage sets in it is called subacute combined degeneration. Here's a good article. You can read other listings too. en.wikipedia.org/wiki/Subac...

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