Hi all...several years ago.... Summer 2004 to be exact, I was too fatigued to even perform basic daily task.
I needed assistance just to take a shower or brush my own hair.
Sleeping just about 24/7, I was DX with moderate level of Perhipheral Neuropathy, "sock glove" pattern, testing done mid June/04 @ Med school.

Was PROMISED my vitamin/mineral levels all 100% normal, not even low.
Hey....I asked! I wondered if caused by having 2 bowel resections, given drugs to treat Crohns disease, 2 year bout w/ severe anemia caused by a leaking intestinal anuerism. 24 blood transfusions later.
NIGHTMARES are made of these type scenarios!
It was found ONLY be complete accident during bowel resection for Crohns.
God does make a few wonderful and great doctors.
This surgeon is 100% sweatheart as well as best surgeon on planet earth!
Instead of just closing me up after the bowel resection, he took the extra time and found a baseball sized anuerism (actually was an AVM..long explanation)

I refused the mind fogging Neurontin, when I complained, was told only to take more! OMG
I couldn't even swallow! Let alone take all those pills!
My DH got me a laptop as I didn't have the stamina to sit up long enough to read a one sentence email!
Besides, I wanted to know why I had this burning over my entire body,
severe muscle weakness, fatigue, depression, muscle twitching, fatigue, loss of balance, fatigue, burning lips, fatigue, spinal pain when chin to chest, fatigue, and severe.....fatigue!
I described my muscle weakness as if walking thru strong current of water.
My balance loss felt like I'd gotten off a boat after choppy ocean cruise.
Just diagnosed by one Neuro as Mal De Embarkement (bad boat ride! )

I slowly was able to "muddle" thru the internet as I searched, slept, researched why I had PN and other symptoms.
I was promised I did NOT have Polymyositis as first diagnosed, then MS, then ALS. I was terrified...especially by the later one.
I wanted to die as I was suffering. My "life" was a virtual nightmare!

Finally someone reached out to help me....Rose, dear!... saved my life!
She suggested I take Sublingual Methylcobalamin B12.
But why...the DOCTORS told me my B12 level was normal @ 232 besides, this was "just" information plastered on the web...not a NEUROLOGIST up at the med school!
Glad I took this wonderful free advice and took my first B12 Labor Day weekend, 09/03/04.

Ten days later, 9/13/04 when my helper came over I got out of bed for the first time in months! (I was bedridden 100% late March.)
I had spent the entire summer in bed, suffering.
I went downstairs, did a load of laundry and a few other chores.
Like a butterfly....I began to spread my wings, eventually back to "flying"!

In October I kept the long awaited appointment for Mayo Clinic in Phoenix.
They repeated my EMG and NC test.
This time the test were back to normal!
Wow, thats less than 2 months! From moderate level of PN, to normal!
Amazing what a bottle of B12 will do for your body!
They too agree my symptoms "may have" been caused by low B12 levels, is written on my final diagnoses.....wow!

It's not been easy while my body makes repairs of the damage done for many years...
Only God knows how long my body was deficient, but I can guess as the begining of the signs began with the Remicade IV' "therapy".

It's just too bad I didn't find this information before I got so damaged.
Its standard protocol to give patients who've had any sort of bowel surgery to give B12 injections. I never got a single shot!
I had no idea what B12 was except was just "another" vitamin!
They failed me miserably...big time failed me!
Why/how in the world they missed this is beyond incompetant!
Being angry does nothing but harm myself with toxic thinking,
So I must go on, forgive, but its hard to do.
I've suffered because they failed me, for a very long time.

I just thank God there's people here in these type forums that are
willing to help when doctors don't offer help.
That they've taken the time to research and study, then pass along this
vital information for us as NO charge! Given so freely!
Its just too bad my 1st post and the other information that was given like a story line, all those post got wiped out during BT big crash...they're once again headed that direction as I've not been able to navigate onto BT for 2+ weeks now.

Any doctor knowledgable in vitamins "may" know that a level of 232 is dangerously low and possibly deadly.
But sadly most doctors have no more training in this than average person.
Doctors are slowely getting the proper info, but most are not reading their journals with this vital information.

We must take charge of our own health.
I'm wondering what the Neuro's would have blamed my death on?
I don't think there's a check off box for "Idiopathic death" on a death cert!

The word Idio reminds me of the doctors I saw.
Actually I'd love to be able to let them experience just one day of my suffering.
I'm sure many of you share this same sentiments...especially if you've received the roll-eyes treatments by many when they'd reached their level of incompetantcy!
All I can do now is be thankful I was able to find the reasons and was easily "fixed".
Also help spread the word, support others who're now in my old shoes.

I've experienced some very bothersome and worrysome odd symptoms while the repairs are being made. A few scary ones too.

I must be sure to take my B12 often and not forget to take it with me when I travel...I didn't take it with me, couldn't find any, thought wasn't that important after all I was "BETTER" and a few weeks without, I'd be just fine.
NOT! How wrong I was.
My Neuropathy came right back, loss of balance, lips burning...just like before...and fatigue...OMG!
Why on earth was I so stupid?
Learned a huge lesson then...I pray that never happens.
I'm one of the few who just don't "store".

What most puzzeling is I've found some people who've experienced similar symptoms as mine. What I felt tied to a B12 deficiency.
I've told them about the websites (BTs still down, 2+ weeks since being able to log on/navigate thru)
But they tell me they will "try" it....then don't...a few told me they'll ask their doctors, their levels normal, allergic to B12 and many more excuses.

I wonder about these people...do they want to be ill?
Do they enjoy the sympathy no one shows them?
Even when I tell them about my experience with doctors telling me mine was normal when it was deadly low...they still want to just trust their doctors and put their lives in their hands.
I just don't get it or understand any thinking like this.
Do they veiw anyone with the word dr in front of their names as infalable?
Both my sisters are doctors! Beleive me....if you knew what I knew! LOL!

I have had several good experiences and have been able to help a few who've had good results and even a miraculous results as mine.

Like a candle in the darkness...pass it on, one by one.
Instead of cursing the darkness, light a candle....all the darkness in the world cannot snuff out its light.
Blessings, Cheryl

Thank you for the joyful smile on my face right now.

Good for you, helping spread the word.

A note to others: Most people, after getting their B12 level up good and strong, could easily go months without beginning to get low again. BUT it isn't worth the risk, as there are people who for one reason or another must have B12 continuously.

Best wishes,

rose

Thanks
for sharing
your Success Story

for the affirmative action
to take charge

Thanks for your thanks to Rose

RE: B 12

I've been questioning Dr's about b12 for years;
most referred to blood tests, per your experience , being "Normal"
A few docs did give injections of Cyanocobalamin
but didn't help as hoped

What are better-BEST ways, forms to get B12 ??

did check out Rose's site/info.
and will go back again for details I may've overlooked,

Please do read all at my site. Not a whole lot to read.

But the short answer on the best way to get it: most people, even with severe malabsorption, do better with a daily dose of at least 1000 mcg than with periodic shots. The better kind is methylcobalamin.

rose

Rose,
thanks for your response.
I've gone thru your site; look forward to more info.

my focus/concern on "TYPES" of b12
CyanoCobalamin-- is the type of b12 listed on ALL vitamins I have.

per yoursite/ links Re: b12 [types] again, which is Best??
Cobalamin
HydroxoCobalamin
MethylCobalamin-- Better [types]??? if so, How/where to get?

Foods, other sources??

Re: previous post & questions of Better/ BEST types of b12
Rose, you did answer question about Best type.--methylCobalamin.
I "missed" this when I first read post. "Cognitive" problems, reading, writing, etc. Things that should be simple... but, for me, too easy to get "confused, overwhelmed, tired, dysfunctional.... a vicious cycle complicated by chronic pain. complicated by vicious cycle of invovlement in tradional med. systems
that are not really helping or answering questions, including those about Vitamins, supplements, etc. that may be helpful in alleviate some symptoms, problems.
b12--sublingual. there are so MANY (brands, etc)
Suggestions, experinces RE: best types, amts, of MethylCobalamin??
Should take other B complex, iron???
I was looking at few online Companies that offer sublingual B12; so many brands, dosages,etc. Will need to buy online as I can't find MethylCobalamin locally in stores, only CyanoCobalamin.
My questions may seem "stupid" or the answers may already be available (w/in these forums,Links etc) but as the info and tangible Link is elusive or not known to me now, I need to keep asking & seeking.
Hope can understand. Appreciate any help ...
Leader of support group for traumatic brain injury suggested telling people I have "brain damage" that makes simple things more challenging & frustrating. Perhaps another forum for those details, but here, now...
need to begin w/ learning about how to get the most appropriate Vitamins, supplements , like b12.

--what is Human Active B12 ?
a friend sent me Spirulina to try. Labels states "this health promoting anti-oxidant" contains minerals & vitamins that included 1.8mcg Vit b12 --human active. Sugested use is 6-15 tabs day.
any info. about Spirulina???

B12 deficiency can also cause cognition problems. Even psychosis can result, although that is not nearly so common. Your difficulties are just one more hint that you may have a serious need for B12, and that you have needed it for some time. Your questions are not stupid, and if anything still is unclear, please continue to ask.

The spirulina will not do it! That is a tiny dose, and that is not a great source of B12 even for someone absorbs like a champ. Most people who malabsorb cannot get B12 from unfortified food and will not benefit. Those who malabsorb severely cannot even get it from fortified food or the usual doses of supplements.

I think that it is a very good idea to take a B complex as well as a B12. The B complex will help cover the possibility that you are not getting enough of another B vitamin.

Iron should not be taken unless you have had testing that shows you need to take iron. A ferritin test is a very good idea.

Many of us order our methylcobalamin online. It is easier to find and much cheaper (which is important to many of us). A good brand: many of us use Jarrow, and we have had lab proof that it works----but I'm sure there are other good brands. Many of us use iherb.com

At least 1000 mcg B12 all at one time (not split into separate doses or extended or timed release). Methylcobalamin is especially good, but I would take any type I could get while obtaining the methylcobalamin type.

rose

About a year before discovering about Methyl B12, I'd been taking this suppliment called EnerPrime.
A freind in Kauai introduced me to this while visiting her.
I'd barely made the trip over there, not even enough energy to walk the 10 steps to the beach just off her Lanai.
After "drinking" this suppliment mixed with OJ, it was like a miricale!
I was hooked! @ $45 a bottle, 30 day supply, I didn't care WHAT it cost!
I needed it to live....but as I continued taking EnerPrime I still continued with my declining fatigue and other health issues.
I was going to help market this stuff because it was the only thing I took that gave me enough energy to flush the toilet.
But because of my absorbtion problems it worked only for a few hours.
Because of my mental decline I began to "forget" to take it, then ran out of it and then began my trip to the "Box Springs" (bed).
You can read my story about this EnerPrime on my website.
I'm going to be making some drastic changes to this to shift it over to just taking MethylCobablim....also perhaps post some links to sites that support the B12.
I showed every single doctor Iwas seeing about this EnerPrime and told them how it miraculously "cured" me for a few hours.
Did they even make a connection as to why I was so fatigued?
After all EnerPrime main ingrediant, Spriulina!
Spirulina.....B 12! Bingo!
How all those doctors missed the B12 in me is beyond maddening!
I told a doctor freind about this last night...
he wants me to write my story up so it could be shared in medical journals...he'll be helping me with this as he's a Health Specialist,
now retired with time for these type stories!
I want to take my story, as well as a few others about our journey down the B12 spiral....and I WILL take this world wide....watch me!
Read my signature/motto: No well behaved woman ever made history!

http://www.crytears.com/

And after years of taking this EnerPrime, my B12 level was 232!
Yes....it showed a normal range of B12, but I wonder how this test was thrown off as I'd taken the EnerPrime just hours prior to having my blood drawn.
Perhaps my real/true B12 level was more like zero, if is such level!
This story of my declining health is 100% truthful....I've held nothing back.
But I do have some mixups with dates, etc, only because of cognative and mentation problems...so if you see some discrepencies, this is why.
Rose, I'm so glad about your website! (Ive sent you an important PM regarding this...hope it gets to you.)
We've got to get these type stories out before someone dies from this as well as releive some suffering.
Please fellow sufferers....please take the proper form of B12, Methylcobalamin and don't bother with very expensive and fancey forms of B12 as it doesn't do the total job as a lot of people have absorbtion problems like mine.
Blessings, cheryl
PS...we leave for the Fla Keys early Sunday morning....
anyone wanna join me in building sand castles?
You can join me at Sand Spur beach in Bahia Honda State Park, just past the 7 mile bridge!

There are many reasons someone might benefit from a product such as EnerPrime. However, I emphasize, please do not anyone rely on it or any other product that does not contain at least 1000 mcg B12 (not 1000%, which is only about 24 mcg and will do a person who malabsorbs severely no good at all).

Another thing I forgot to mention, a product relying on spirulina can also contain B12 anologs that are not usable and can skew further an already unrealiable B12 test.

rose