Vitamin B12 deficiency
AnonymousApril 27, 2009 at 6:39 pm
I had blood work done last week and just found out today I have a Vitamin B12 deficiency. I am to take 500mcg a day for 4 months then get retested.
I was wondering does anybody else with CIDP have a Vitamin B12 deficiency?
I was wonder if my lack of B12 is due to my CIDP in any way.
AnonymousApril 28, 2009 at 7:48 am
Hi Sue! It’s possible that it could have some linkage. Many people with auto immune disorders get vitamin deficiencies. I have Lupus and then it went into CIDP. But then I got diagnosed with Vitamin D and B problems. Sometimes medications can eat the stomach lining causing this, Celiac Disease or Chrons Disease and many other diseases can cause issues. And then some people have CIDP which is misdiagnosed and it was a B-12 issue all along.
And then our diets too can sometimes cause problems. Elderly people can get deficiencies easy because their eating habits can change.
It could be linked but then again it might not! But those with auto immune disorders are prone to getting vitamin deficiencies because of their illness! Hope this helps! Hugs!
AnonymousApril 28, 2009 at 8:41 pm
Hi Sue! I too was eating alot of foods with B-12. But kept getting very nervous and jittery and noticed that I was staying numb worse than usual. It too was a different kind of numbness. Sometimes a persons body for many reasons can cause malabsorption problems. Meaning the stomach lining is no longer absorbing the B-12 no matter how much you eat things with B-12 in them. I thought I was getting enough Vitamin D too and Calcium but have problems with that also. CIDP could be the cause since we are dealing with our nervous systems. The nerves in the lining of the stomach might not be working as well as it should be. Auto immune disorders too can cause it! Many things can cause low B-12. There are two kinds of B-12 issues though. One is being low anemic and the other one is A Pernious Anemia. One only requires taking the pills until your B-12 levels get back to normal. Where the other one can be life threatening requiring shots just like someone with diabetes having to take needles for insulin meaning they no longer can make Intrinsic Factor! I have to take needles of B-12. Some folks only need a once a month dosage while others needs shots weekly. I have to be the weekly one! And I hate needles! LOL! I have been getting shots for over 3 years now and had Andy giving them to me because I was big chicken!
Then one night I felt myself getting a B-12 attack and knew I waited too long to have that shot. It was when my mother was sick. I ran into the bathroom and stabbed my arm and gave myself that shot! Now I am giving myself the needles instead of Andy. But still hate the needle jabs! If you only have to take the pills and no needles then you are still making Intrinsic Factor and absorbing some B-12 but not getting enough. When your Intrinsic Factor becomes positive then you have no choice but to take shots in the muscles. Alot of people can get low B-12. Sometimes a persom’s potassium can get low. It’s just our immune systems might be lower than we thought and we need that little extra help to get us feeling better again! But CIDP may be a factor. Good luck Sue! Good to hear from you again! Hugs
AnonymousApril 28, 2009 at 10:03 pm
Hi Linda I read that it takes about 5 years before Vitamin B12 deficiency shows up in blood work. Just over 4 years ago I got CIDP.
The DR wants to retest me in 4 months. I going back to see this Thursday for another reason and I will ask for a copy of the blood work and also ask what causes people to get a B12 deficiency even if they are eating enough food with Vitamin B12. I want to ask the DR about Intrinsic Factor.
A very close friend of mine (on and off boyfriend) has B12 deficiency and the pills are not working. You said [QUOTE]When your Intrinsic Factor becomes positive then you have no choice but to take shots in the muscles[/QUOTE]
He has such bad muscle spasm and the pills are not doing a thing.
[QUOTE]Then one night I felt myself getting a B-12 attack[/QUOTE] What are the symptoms for you of a B12 attack? Since both me and my friend have it I want to keep up on the information
Thanks for the info
AnonymousApril 29, 2009 at 7:59 am
Well Muscle Spasms is one and Nerve Damage is another symptom. Feeling aggitated or nervousness, headaches and dizziness, fatigue. Those that no longer make Intrinsic Factor can get really really sick. They can have a stroke or go into a Coma if the B-12 gets severe. Mild cases to can cause nerve damage and if left untreated the nerve damage can’t be repaired. And if it can be repaired then it takes a very long time. Muscle cramps too are a symptom. He may need to get rechecked.
Do you remember the Terry Schiavo Story they had a few years back where the husband wanted to pull her feeding tube and the family members were trying to fight him in court. There was also a movie about her! She had a B-12 problem and went into a stroke and coma making her vagetative state. It really messed that girl up. She ended up having to have round the clock nursing home care and could not speak. They said she had the massive stroke when she was in her early 30’s and apparently had a B-12 problem that never got diagnosed until it was to late. If he is having these kinds of problems he needs to be rechecked.
I thought my lupus was acting up and was passing out everywhere! So my doctor sent me to see a Neuro back then. They checked me from head to toe and did every lab possible. Everything came back normal except for the B-12. Once they started me on it, I started getting better. Then a few months later after that car accident I went into a lupus flare again but that time it was lupus. Was complaining my lupus was giving me a fit and it was B-12 instead. B-12 and Vitamin D both can really play a number on your body thinking you are dying if it is severe.
Good idea about getting rechecked. But those shots every week for me are a pain! I hate needles! LOL! Hugs
AnonymousApril 29, 2009 at 9:53 am
Hi Linda and thank you so so very much. He does get the muscle spasms so bad. He also has a broken back from a injury about 11 years ago but the spasm keeps him awake at night so most nights he barely sleeps.
I will definitely tell him to ask the DR about Intrinsic Factor. He goes see the DR tomorrow.
AnonymousApril 29, 2009 at 5:43 pm
Wouldn’t it be strange if those spasms he was having a not sleeping was the B-12 problem? Quite possible! I too have an old back injury that messed me up after surgery last year. Finally am doing better there but still not what I should be! Will say my prayers for you both! Hugs Sue! Missed ya!
AnonymousMay 28, 2011 at 6:50 am
I have been diagnosed with CIDP and am receiving IVIG (Privigen) treatment.
My initial symptoms where pains in the feet. This was thought to be caused by a B-12 deficiency. I was treated with a course of B-12 injections which cured the pain. Subsequently B-12 deficiency was found not to be the problem and CIDP was diagnosed.
The pain in my feet returned and is getting steadily worse and I can envisage not being able to walk due to this in the not too distant future. Although my B-12 levels are on the low side they are within the accepted limits. I have decided to go back to my GP and also my Neurologist with a view to trying the B-12 injections but know that I will have difficulty convincing them.
Has anyone on here had similar problems with foot pain and has B-12 helped to cure this?
May 30, 2011 at 7:04 am
Hey Michael, it’s interesting how old posts keep surfacing as we seem to have similar experiences. I too was initially diagnosed with B-12 deficiency (although my EMG was classic for CIDP) and treated with B-12 injections. As I continued to spiral downwards I was later diagnosed as having CIDP and confirmed with lumbar puncture.
I do continue to be borderline B-12 deficient and take 1000mg injections midway between my plasma pheresis procedures (two PEs every 6 weeks on back to back Fridays).
Insist with your doc that you want the B-12 injections and don’t take no for an answer. They’re inexpensive, safe and can help with the pain and your energy level (and ensure you have enough B-12 available for your body to use for the myelin repair processes). Unfortunately the pain in my feet hasn’t gone completely away …
Wishing you success … Gary
AnonymousJune 7, 2011 at 12:03 pm
Many thanks for the reply. I have recently had a blood test to determine my current B-12 level and have an appointment to see my Doctor next week with a view to starting a course of B-12 injections.
The information regarding B-12 and energy levels and its benefit in the myelin repair process is also new and of great interest to me.
As a practicing Salvationist thank you also, for reminding me of Psalm 46.
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