vitamin B deficiency,planninguy, wright, anyone?

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wheeler641

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I have a question, planninguy ?, I know you were diagnosed with a b-12 defeicency. What were your primary symptoms, The reason I ask is cause I was talking to my oldest daughter last week and she too is having problems and is being tested to some sort of myopathy. She is experiencing a lot of the same symptoms that I have and started taking large doses of a B- complex and also vitamin B-12 twice a day. She told me she started feeling better. Now let me say, my daughter is 45, I am 60, not that much difference in our age, but that is a story for another day(thank God for supportive parents) If I remember right that is about the same age I started to feel crummy, I can remember about 5 years ago, I was walking around the lake county fair(it is huge) and my legs felt very heavy and could hardly make it back to the car. So as I think back my problems have been goung on for awhile. They were so gradual that I did not notice them until all hell broke loose. So now my question, could you have a vitamin B deficiency even if it does not show up on your bloodwork? The reason why I ask is since I started taking them, the cramps in my legs have all but subsided, the numbness and the tingling is gone from my toes and fingertips and the twitching is about 60% better. I have been waking up the last few days feeling better than I have in months. Is it just a fluke? Its been awhile since I could actually say I felt good, Yesterday I felt good! Anyone with any input,please chime in. Even my muscle aches feel better, its been so long I really do not remember what it feels like to feel good, but I guess this it it. I know this is probably not Als related, but I am still searching for anwers and hoping this is it. margaret
 

awieleba

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margaret~

could it be vitamin and hormonal? I just this on Oprah where about 40-50 women start feeling this way even though there test are normal, it may not be normal for you. Have you had all your hormones tested? They say even if the fall in the normal range,it can be a issue. ANd that when women started to take bio identical hormones they felt great? just a thought. ALso, I use to get vit. b12 shots from my doctor. I thought it was better than pills because it went right into my system and I went once a week. .....

I am glad that you feel better!
 

wheeler641

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I have been doing some research on the internet about this also. If I am reading it right the answer to my question is yes you can have low b-12 even though your blood test are normal. Its caused by a not being able to absorb to b-vitamins. It says there is a spciefic tests called a schilling test. Hmmm, do not want to get too excited, too soon want to give it a few days, just to make sure. If this is what it is, I sure will be asking for injections. Still waiting for the results of the last round of tests, margaret
 

lydia

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Margaret,

I was "diagnosed" with low B12 (311-sorry can't remember the units). From what I understand this is, by some standards, a low normal range. I take 1000 mg (?) a day. I have not noticed any difference in my physical complaints. When I first was told to do this I remember there just happened to be in the news a story about B12 and its ability to impact neurological function at levels not normally considered "low" by US standards. So I was optimistic. But perhaps your level was just not considered low by your physician but should be considered low in light of current thinking about the effect of B12. And hey, if it is making you feel better then keep taking it. Find out your level and let us know.

My mother and I were 15 years apart also. :p

Lydia
 

wheeler641

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my level when last tested was 558 which I quess is pretty much normal, but from what I have read this morning the standard test is not always correct. I was diagnosed with low potassium, magnesium and vitamin D, I have been taking supplents for these, but I noticed no difference in the cramps and numbness in my toes until I started the B vitamins last week Thursday. For the first time in months I am actually feel my toes! margaret
 

wheeler641

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One more thing, my daughter was found to have a gluten intolerance, so I too cut out gluten about the same time I started to take the B vitamins. I have not had a gluten intolerance test yet, my daughter has better insurance than I do and wanted to see what the tests I already had show before I move on to the next slew of tests, margaret
 

crystalkk

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Margaret,

The gluten intolerance could definately be the be the problem. Do a self test stop taking the b-vitiamins, but stick to the gluten free diet
and see what happens.
 

planningguy

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Wheeler,

I'd be happy to answer what I know regarding B12 deficiency. Vitamin B-12 is involved in cell metabolism, nervous system function, and red blood cell production. The most common sources in the diet are meat and dairy products. Some early signs of B12 deficiency are fatigue, irritability, and trouble with memory. Other common symptoms include a sock/glove feeling in the extemeties, swollen or sore tongue, and pins and needles.

A chronic situation that is not remedied can eventually lead to serious neuropathy and nervous system damage. Prior to medical discoveries of the turn of the century those with pernicious anemia eventually died (American sharpshooter Annie Oakley suffered from the ailment).

A common cause of chronic B12 deficiency is pernicious anemia. In pernicious anemia the body lacks intrinsic factor, a substance secreted in the digestive tract that allow for the absorbtion of B12. Bloodtests (including a full blood count) can be performed to help home in on the diagnosis. Because of the affordability of B12 treatment (a few dollars a month here), and the fact that few labs perform them anymore, doctors rarely go the full 9 yards with a Schilling Test.

It is important to note that with pernicious anemia and other absorbtive problems, oral B12, even in high doses, will not resolve the problem. The only way to keep B12 up in those cases is through injection (usually monthly after normalizing levels, but some cases require it more frequently). The shots are easy to self-administer.

In the US the most common measure of B12 is picomols per liter. A recent USDA study used 258 pmol/l as the cut point for low normal, but there are many who feel this is too low. Some individuals may start to experience symptoms when there B12 drops below 400. It is also possible to have normal B12 blood serum and still have absorption problems. This is why a full blood count is an important part of the diagnostic process.

I hope this helps,

Robert
 

planningguy

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Rereading the thread I just wanted to ask one thing. When you say your daughter had gluton intollerance, did she test positive for celiac sprue? If that is the case you will want to follow up with testing yourself as there is a genetic component to the likelihood of getting the disease. Fatigue, diarrhea, and weight loss are the most common symptoms.

Both celiac sprue and pernicious anemia are autoimmune disorders that deal with the digestive tract (I was tested around the same time). Celiac sprue can account for a number of vitamin and mineral deficiencies which can cause secondary symptoms.

Take care,

Robert
 

wheeler641

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Robert, i will have to ask my daughter exactly what kind of a test she had, she has had a multitude of tests done, she even had one done that she said took about 6 hrs, drawing blood at different intervals, not sure what that one was for, I think some sort of myopathy. Oh, my God, that is exactly what my feet feel like, it is like I am wearing socks all the time even when I am not. But my B12 was like 558 or 568 thats not considered low?. But it is so wierd that I can actually feel my toes again. My daughter and I kid each other that if one finds what the problem is, chances are we both will have it, our symptoms are so similiar. Mine as I look back have been going on for years, only recently reaching the point of extreme concern, her's have just started, thanks margaret
 

planningguy

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I got your PM but will respond here for those who may have been following the thread. The sock and glove feeling that comes with chronic significantly low B12 is due to peripheral neuropathy. So anything causing trouble with the peripheral nervous system can generate a similiar feeling.

Take care,

Robert
 

wheeler641

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Well I am just glad I do not have it in my hands too, otherwise I would be sleeping with gloves on:razz:In my p.m. to Robert I mentioned I slept with socks on because the feeling was just too wierd. its just king pf strange that the cramping also has calmed down also. Who to you think I should mention this to, my Gp, Endocrinologist, or rhuemy or all of the above? I am not yet seeing a neurologist, but if this is neuropathy than in would not be necessary, would it? margaret
 

wheeler641

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also wanted to mention, I had an mri of the lower spine that showed some degenerative changes around L-5 I think. I will ask my doctor for a copy of it and post it on here. Could something compressing my spine cause neuropathy? I had a whole, big, long post than I hit a button and it vanished. Well its time to let it go at least for today. For some reason, I have been feeling better the last few days and I guess thats all that matters, thanks robert and all margaret
 

planningguy

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Wheeler,

You are quickly drifting out of my very limited knowledge base. I would certainly mention it to the doctor who has been managing your case. As far as the MRI, some degenerative changes are a normal part of the aging process, so only a specialist could way in on whether or not that's part of your problem.

From what I recall your case was pretty complex with some existing conditions muddying the waters. Perhaps it is time to see a neuro, but I would make sure it was someone who would be able to coordinate with your existing doctors, especially since you have indicated that cost/insurance is a concern.

I really do wish you the best of luck. You seem to be wrestling with quite a bit.

Take care,

Robert
 
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