The Wii – Exercise – B12 Deficiency – Dementia – Methylmalonic acid

Today I’ll respond to 2 recent comments.

1. no1daughteroflewydad submitted on 2009/02/22 at 7:44pm

Hhahahahahaha that’s wonderful.

I was thinking about what you said about exercising and know that where you live is extremely cold. You are computer/technical savvy so what about the Wii games.
I have heard people speak highly of them. So I had a bit of a search and from what I can see here’s a couple:

Wii Sports: includes Baseball, Tennis, Bowling, Boxing and Golf games for the Nintendo Wii..sounds like fun.

Wii Fit; uses the Wii Balance Board, a pad that players stand on while doing various types of exercise, including calisthenics, yoga, and balancing.

You could treat yourself, have fun and a laugh and excercise too.

Just a thought, cheers.

Interesting that you mention this. We are on the same wave length. I’ve been reading all about the Wii. Pam’s brother and his wife (Scott & Kelly) bought this game for their 2 boys (Austin & Ryan) for Christmas. Kelly ends up using it more than the boys. She swears by it to the point that she goes to the gym far less often now.

I put this on my wish list for Santa Claus. It is truly an expensive product. Normally, I would have already purchased this but it’s too expensive for us now. I never had personal medical disability insurance but did have it through my employer in CA. Fortunately it kicked in but even with it, our income has dropped by 90%. I always heard that whatever one’s level of income is, one can not go back. We are examples of, “Yes, you can go back.” I was taught growing up that God meets all of our needs. Not necessarily all of our wants. We have a roof over our heads, warmth, clothing, food, water, etc. We no longer eat out but that is not a need. Coupons are now a part of our life and Chad helps us out as well. I am not at all complaining. We are indeed blessed. I think of all the families who are now being laid off from work and have no income whatsoever, thanks to some greedy folks in this country. My heart goes out to them. If we save up slowly, I think we can get one over the next year of so. After all, we all need something to look forward to!

2. Sally Pacholok submitted on 2009/02/19 at 10:05am

Hi David,

I received a Google alert regarding your blog because you mentioned pernicious anemia. I am the co-author of the book, “Could It Be B12? An Epidemic of Misdiagnoses,” Quill Driver Books, 2005. I have been researching vitamin B12 deficiency/autoimmune pernicious anemia for over 20 years and out of frustration co-authored this book with my husband who is board-certified emergency medicine physician.

I realize you have been diagnosed with LBD, but I am wondering what your serum B12 level was at the time of diagnosis (10/07), did your physician include a urinary methylmalonic acid (uMMA) test and homocysteine to rule out B12 deficiency?

The medical and health care community has a major knowledge deficit regarding B12 deficiency. We have encountered many patients diagnosed with dementia who really had a B12 deficiency. One woman wrote to us regarding her 54 year old husband who was diagnosed with CBGD. Turns out he had a B12 deficiency—-on a proton-pump inhibitor for 20 years. He started agressive B12 therapy–and has improved greatly, but still has some deficits.

Even if you are on B12—-make sure it is high dose, this in itself you may find helpful in improving your signs and symptoms—(methyl-B12 5,000mcg lozenges daily)—-your could also try hydroxocobalamin injections. If you are not on high dose B12 or injection—–get yourself tested, before you start taking B12. Contrary to most doctors education, you do NOT have to be anemic or macrocytic to have a true B12 deficiency.

Norman Clincial Lab in Ohio does this test, as well as other reference labs across the country.  NCL website is http://www.b12.com.

If you like—email me at the above email address and I will be pleased to guide or help you in any way possible.

We have also found that patients with dementia on high-dose SL B12 were calmer, better mood, and their dementia did not get worse.

The problem is some patients who have dementia have a true B12 deficiency, but if it had gone untreated for some time–and injury occurred, their brain is not going to improve, therefore many studies incorrectly report that B12 does not improve dementia. Yet there are reports in the medical journals where patients were diagnosed with dementia early on —were found to have a B12 deficiency and treated, and some completely reversed. Every patient with beginning dementia, diagnosed with dementia, or Alzheimer’s deserve to have B12 deficiency properly ruled out.

In addition, B12 deficiency causes frequent falls—and we see an array of elderly coming in with hip fractures and other bone fractures—that we test in the ER—and have a true B12 deficiency. We are wasting billions of health care dollars and injurying millions of people because of this ignorance. The standard of care needs to be changed, and that is our goal.

Best Regards,

Sally Pacholok, R.N., BSN

I think Sally has some good points.  I had the complete dementia evaluation at UCSF, so I dug out  my records of all the lab test which the dementia experts ordered. Indeed, I did have the  MMA and homocysteine levels performed, both of which  were  normal.

I’ve researched this as well as having spoken with some hematologist friends of mine. My summary findings is:

Increased methylmalonic acid levels may indicate a vitamin B12 deficiency. However, it is sensitive without being specific. MMA is elevated in 90-98% of patients with B12 deficiency. This test may be overly sensitive, as 25-20% of patients over the age of 70 have elevated levels of MMA, but 25-33% of them do not have B12 deficiency. For this reason, MMA is not routinely recommended in the elderly. An excess is associated with methylmalonic acidemia. MMA concentrations in blood are measured by Gas chromatographic Mass spectrometry.

I am by no means discounting what Sally is saying. I applaud and respect her and her husband for writing their book. Their  are some truths to it, I’m sure.

Just like other theories and the multiple articles written about coffee, tea, gingko, chocolate along with dozens of other good ideas, I speculate that this is yet another one of those controversial topics which needs further research when it comes to dementia. Of course, this is only my opinion. I have been wrong many times in the past. I thank Sally for making this valuable comment.

Warmly………David

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9 Responses

  1. Dear David,

    Regarding the MMA test, you and others physicians are speaking of the serum MMA not the urine MMA. It is most unfortuante that the majority of the medical community does not understand the difference between the two tests, sensitivity, specificity, and use in screening. Urinary MMA has proven to be both sensitive and specific. I have written to Eric Norman, Ph.D. from Norman Clinical Laboratory, Inc. and asked him to write to you regarding the difference between the two tests. He was one of the original researchers back in the early 1980’s who developed and perfected this test with the Division of Hematology-Oncology, Deptartment of Internal Mediine, University of Cincinnati, College of Medicine. It is most unfortante that others (University of Colorado)took their work and applied it to blood serum, and gaining much recognition and financial gain from doing so. But Norman’s and others research of MMA was intended to be done on urine not serum.

    I’m sure Dr. Norman will write to you when he has a chance.
    My suggestion, is to retest yourself, and don’t forget—just because you weren’t deficient last year—or whenever they tested you—doesn’t mean that you are not deficient today. My aunt has a uMMA of 2.7 and 13 months later she became symptomatic—so we re-retesed her and she was 4.1 which means a B12 deficiency. She has been under treatment no for 4 years and is feeling great—she is now 80 years old.
    You could also prevent a B12 deficiency by taking daily high dose B12 over 1,000 mcg (preferably lozenges or SL). You should retest yourself—and also take daily methyl-B12 5mg lozenges for prevention and health. Since you have LBD I would suspect that you are already on a combo B12, folate and B6 supplement. If not it may prove beneficial because of your LBD. But many combo–supplements don’t have enough B12 in it, so investigate your options carefully.

    Sally Pacholok, R.N.

    • Sally………. I should have been more specific. I did have the urine MMA at UCSF. You are correct. I do take high doses of the B-complex vitamins including high doses of B-12.

      Thanks…….David

  2. Hi,
    kindly let me know the difference between urinary and blood testing of MMA. How urine test can be more sensitive and specific than blood. I am working in genetic laboratory of metabolic disorders.
    Waiting for your answer.

    • I would suggest doing a Google search on this topic. This blog does not focus on laboratory studies and techniques.

      David

  3. Hi David, 🙂

    My grandkids have a Wii and I “test drove” it while playing bowling and tennis and baseball with them. It’s definitely got a learning curve. I love real tennis, though I’m not very good at it. I was really looking forward to playing tennis on the Wii but it seems to be mostly forehand, no switching back and forth to back hand. I wonder if that could cause repetitive action problems – like carpal tunnel from computer keyboards? 🙂

    I know when we bought a nintendo system for our kids decades ago, we were able to rent one to try it out. I wonder if there are any places locally that rent the Wii and some games for you to do the same to be sure you like it before you buy it? 🙂

    You and your family continue to be in my prayers. Have a blessed week!

    • That’s a great idea! Never thought about renting one. I’ll look into it today. Thanks, Kaye!

  4. We rented them at Hollywood Video which is now gone in our old town. But I believe there are plenty of other specialty stores that offer rentals. Let me know when you do, I’m looking forward to hearing what y’all think of it 🙂

    • Hi Kaye………..I check on it today with Gamestop in our area. They rent the modules which go with the Wii but they don’t and are not aware of anyone who actually rents out the Wii console. The price is now down to $200. As time goes on and another “newbie” hits the block, I’m sure the price will continue to slowly come down.

      David

  5. Hi,
    My husband has a b12 deficiency and his Neurologist thinks he also has Lewy Body but cannot be 100% certain. His memory is not too good and he does have some stiff muscles.
    His most disturbing problem to me is that he has panic attacks and breathing problems that I wonder if were caused by the b12 deficiency. He had depression (or so we thought) for around 4 or 5 years before they finally tested the b12.

    He also has sleep apnea and very low motivation. We are going to the Mayo Clinic in September for a 2nd opinion. He is taking Atarax for the panic attacks and no other medicine at this time aside from monthly b12 shopts

    I am just wondering if it sounds like he could be totally b12 or if there could be Lewy Boday also.
    And what to do about the breathing problem.

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