Hi...hope this reaches some in time!
Right now...here on Pacific time 4PM on Discovery Health Channel is Mystery Diagnosis....story called "Bizzarre Visions"
A woman had 10 year health saga...exactly like mine.
They diagnosed her with B12 deficiency while testing within normal range!
I'm recording it.
I'll put a link to programs web site.
Gotta go now....is on Dish Net Work Disc Health Chn...on again after midnite tonight...but not to worry...I'm recording it on my special DVR recorder, is from Dish Network so I can record their programs....hey...always a way to take your $....grrr!
later, cheryl
PS...OK...got it recorded and now on DVD.
PM me if you're interested in this!

I wish they had taken some real time to avoid repeating some of the common errors and making some "new" ones. But I am very happy to see any good attention to this issue.

Thank goodness they made the point that people can be damaged without being anemic. And, miracle of miracles, they didn't confuse "pernicious anemia" with an actual anemia. They did say that it was lack of intrinsic factor.

And what a dream doctor. Most would think the result of 200 was just fine, not to mention alarming. Most wouldn't be alarmed unless the result was under 100, some dinasaurs even 50. I know, I've met one.

Unfortunately, they repeated the old line about some people not becoming anemic early in their B12 deficiency. 12 years for that woman, and years for me while months from death. Early????!!!!! Others too. Old ways of saying things continue like old political sound bytes.

Although iron deficiency anemia often occurs along with B12 deficiency, the anemia that occurs in many due to B12 deficiency is not iron deficiency anemia as was said in the program. Megaloblastic or macrocytic anemia is the anemia B12 deficiency can cause.

They even confused stomach surgery with intestinal surgery. Removing a large portion of the distal ileum will cause malabsorption, as will removal of part of the stomach or bypassing it. But malabsorption acquired due to nothing anyone has done or undergone is far more common.

Contrary to what they said, intrinsic factor is not necessary for absorption of B12 into the blood. Intrinsic factor is necessary for absorption unless a very large oral dose is taken at once. This results in some absorption by default. This was discovered about 40 years ago, but it still isn't known by most doctors, probably because so many editors have not updated their B12 information for that long and longer.

Also, it is important to remember that although she had digestive symptoms, many who are severely deficient do not. And again I stress that symptoms vary tremendously and there are far too many possibilities to list.

Anyway, the program will do a lot of good. And fortunately for the woman featured, she hadn't been severely malabsorbing all that time or she would have been dead years ago.

rose

Rose, what really puzzled me is this woman seemed to be "living" just fine BECAUSE she was able to continue working FULL time.
When I was at my "worst" I wasn't even able to wipe my own chin and husband hired in home care for me I was THAT ill and severly fatigued.
No way could I have worked, let alone get out of bed just to get dressed.
WHY wasn't she fatigued???
Isn't "that" one of the first signs?
What can we do to change any of this, I mean educating Doctors and Labs values so others won't continue to suffer.
This "illness" has ruined my life...I'm ashamed to admit, it damaged my brain and has caused a change in who I once was...I'm easily confused, easily upset, emotional rollercoaster...etc.
This is only the tip of the ice-berg regarding my health issues that continue to bother me.
It really worrys/scares me, wondering how many others out there just like me have died or continue suffering day in day out like I was....
and so many "what ifs" like what "IF" my husband never gotten me this lap top so could surf the web...
and what "IF" I hadn't found the proper information regarding B12 deficiency as being a possiblility what was wrong with me...
and what "IF" I was a person who simply beleived my doctors in what they told me that
"THIS" was NOT possible as my level of 232 b12 was normal range!?
How many others are out there?!?!
It makes me want to shout from the mountain tops....
or do something "drastic" to make headline news in order to get this out there
Not to worry...I'm not THAT brain dead!...
but like my motto says "No well behaved woman ever made history!"
There must be a way!...maybe take someone like Oprah or Dr Oz to get this word out?! There's got to be a way!
I will spend the rest of my life turning over stones to spread this word...as long as I have energy...
I don't want to make a donkey out of myself and discredit others good work...so am careful in ways I present this.
But there's got to be a way!
Blessings, cheryl
PS...I guess they've aired this program long ago and I missed it...
so I'm guessing you've seen it, but I am offering a DVD copy to those interested.

Hi,

It is apparent to me that she was being depleted very slowly, so did not have severe malabsorption (at least not until recently).

I also remained very active for years. It was only when malabsorption became severe and began taking me down very fast that I became disabled. Until then, in spite of some problems that had been coming on for years, I was dancing, taking down walls and doing other home improvement, landscaping, teaching, taking long walks, and, in general enjoying my active life.

There is no first sign. People are different. I also did not develop fatigue for a very long time, not until serious motor damage and balance issues had been present for some time.

You may still improve. Some of the things you mention didn't go away or mostly away until several years had passed. Unfortunately, the motor problems may be with me forever, but since other things have improved even in recent months and years, I have some hope for that.

I asked the same question of the neurologist who diagnosed me. How many others?! He agreed that the numbers would be staggering.

I know progress is much too slow, but it is speeding up.

rose

Yes...I am hopeful that repairs being made will some day be "complete".
But sometimes I feel as if I'm on a merry-go-round and up and down and I cycle around back to one of the bothersome symptoms and fatigue.
But the neurological and balance problems seems to hang on...then all of a sudden I'm back to needing my rolla-walker.
I've had two serious falls since last night and my feet are burning again.
Maybe one day I'll come to terms with this, and I wont be so frustrated.
I think having other health problems overwhelms me...and the pain gets to be just too much some days...
I'm sure you can tell....I'm having "one of those days"...but has lasted a lot longer than usual.
I guess I should be thankful we're now here in Oregon...we moved here from Romona California... We just learned that our former neighborhood has entirely burned to the ground.
We here in the Pac NW are always complaining about the constant rain.
What a disastor this is...what a price they're paying for all that sunshine.
I pray for all my freinds down there...they are terrified...is really sad.
Blessings, cheryl