Perhaps new members will benefit from reading my story, encourage to not give up, and to learn there may be hope for their health issues!

Most doctors are UNwilling to learn more about B12 deficiency or consider such in cases like mine. I'm not all sure how true this statment is, but I've had a lot of naysaying even AFTER proof!
I worry many lose their lives suffering years of undiagnosed or missed B12 deficiency.
This could have been my case had I missed contact with RoseB here on such forums as this..

After a head-on collision with a drunk my Fibromyalgia pain worsened...then had about every dx possible...
Polymyositis, MS, Hashimoto hypothyroid, Crohns disease, Intestinal AVM (anuerism).
Simple gallbladder surgery 5 years ago, a nerve damaged bile duct...leaving me in pain 24/7.
During all this I had ID theft, my once perfect credit ruined, 3 years to fix.

Rhuemy who'd been treating my Inflammitory arthritis process (another Crohns side) felt I may have MS.
He told me it took 20+ years for his wife to get a Dx of MS, felt I had as well, sent me to Neuro's for testing.
They refused to perform even basics. Said no indication for needing such. WHAT?
He was frustrated, angry, so sent me on to another, then another, then another!
It took several Neuros to finally do the EMG and NC test, where Dx of moderate Peripheral Neuropathy (PN) was found.
A lot of this stubborness was done in retaliation because my Rhuemy was NOT part of THAT hospital system. Politics!

They did NOT do the muscle biopsy my Rhuemy wanted in order to rule out Polymyositis.
A 4th Neuro did an MRI...did just a plain and simple MRI...no dye or potentials.
Said the amount of plaques I had in my brain were noramal for my age, then 51.....hmmmm.

I didn't wantan MS diagnosis...beleive me...but having such odd and weird Neuro symptoms, naturally wanted to know whats wrong.
I had total loss of balance, burning lips, numb toes & fingers, but only slightly, numb patchess on my skin on my body, thighs, upper arms....
Never any visual problems what so ever except brown spots and glasses for reading!

I had extreme fatigue, muscle weakness & twitching...Dx as BFS and Idiopathic PN.
My main complaint to each Neuro was burning lips, fatigue, muscle weakness,
loss of balance, legs, toes, hands all burned plus entire body burned but different way.
I never did tell about the shock like feeling I got when put chin to chest.
Why bother?! I've since learned is spinal cord damage from B12 def!

I could hardly stand or walk my balance was so bad... I had to use a rolla walker when not in a wheelchair.
Sometimes my balance would majically go away in just a few days...then I'd walk normal.
It was like some sicko joke...the doctors did NOT beleive me...were terribly dismissive and errogant.

One time I walked into church feeling OK...when I went to leave, my balance was so bad I was falling.
A doctor freind helped me out to my car, asked me what I'd been drinking...
of course was kidding, but he said this fleeting balance was nothing he'd ever heard of.

All these Neuro problems, muscle weakness began shortly after receiving Remicade infusion for Crohns disease back in Oct 2003.
One time I was so upset and frustrated...at wits end...I took this Neuro by the hand and began weeping, sobbing as I cried out
"Please help me, I'm suffering and I just don't know what to do, can you please help me?
I'd been bedridden entire summer and nothing was helping me, she was the last Neuro appt before I was just going to go "give up and die".
It was the 3rd time I'd seen her in the last 2 years.
I'm so embarrased at myself, for practically throwing myself at her feet so to speak...in shear desperation for help.
She recoiled her hand...what would I expect? A warm hug, or soft spoken...."I understand, honey"?....Ha!
She had laughed at me, told me "impossible" when in my first appt with her described my 2+ year bout with burning lips...
described as if I'd put chili on them. I was made to feel crazy or hypochondriac just for that Sx alone!
She explained the nerves just don't connect and burn in pattern I'd described...oh yeah?!?!? ha!

In bed for months, even unable to sit up at the main computer, hubby got this laptop for me to "research"...with such low mentaion then...ha!
But I wanted to know WHY I had PN, Neuropathy...increased amount of Neurontin did NOT help, only made me groggy on top of the fatigue.

Then one day....my life took a turn for the better!
I found Brain Talk....Rose answered my plea's....suggested I take Methyl B12.
Argued that...my B12 level is normal!..its 232 and my Neuro told me was within normal range.
I'd asked only because of my 3 year bout with severe anemia caused from the anuerism.
Is too bad all this very impoortant info got "lost" in the "big BT crash"!
It proves my case...but I guess when you read this, you'll beleive and will make sense.
I'd had 2 bowel resections in my small intestines, 25+ years of diarreah, Dx as Crohns...
was NEVER given B12!...I asked if was vitamin or mineral defiency! Was told, Nope, not needed! Ha!
But then I was 100% clueless about B12 anyway....I had no idea how important this one is.

Sometimes I feel naughty and wish I could transfer my suffering onto the ones who were so dismissive and uncaring.
Absolutley not an ounce of compassion or caring for way I was suffering.
It makes me want to just sob....looking back at how ill I was, wanting to die.
My prayer to God each nite..."Let me go to sleep...never wake up, PLEASE dear God. Heal me or kill me..Please!"...
Thats one prayer He hasn't answered yet!

I began taking sublingual 5k mcg, Methyl B12 Sept 3, 2004. Ten days later on Sept 13, '04 I got out of bed...
My husband hired in home care for me I was that ill.
That was the end of my 6 months of being totally bedridden.
I had a "Honey moon period" before the repairs got serious.

That mid October I kept the appt made for me months before, for a 2 week long stay with Mayo Clinic.
I was "well" enough to fly down on my own, even took a day tour up to Sedona AZ,
felt silly having all these test done as I was no longer feeling so ill.
The doctors I saw agree'd that my symptoms most likely WERE nothing more than B12 deficiency...
that 232 B12 level was very low, but within normal range for US Lab standards.
I'd been drinking a green drink loaded with Spyrolina (seaweed=B12) and taken it the morning I'd had the blood test for B12...
God knows how low it really was! ...probably 100!...only God knows?!?!
A homocystein and MM acid levels were never ordered....huh??!!?

Mayo clinic repeated the EMG and NC test...then were back to normal!...
This was JUST with one bottle of Methylcobalamin...never had a single injection of B12!
So very good arguement for sublingual Methyl vs IM Cyana B12 (shots) !

My balance came back...I hiked along the cactus garden, walked around the town of Sedona shopping.
My lips stopped burning, my fatigue lifted, muscle weakness not as bad, twitching began to abate somewhat...
I was a new person as I began to "Live" again.
Its not been easy....the 3 years my body's been making the repairs for damages done during the time I was B12 deficient.
I have scary set backs, bouts of balance issues whenever I get careless with supplimenting.
I continue having muscle weakness, often sucking fatigue but I weaned off Prednisone last spring.
But since going back on Prednisone, the muscle weakness and fatigue is much better...indicative of Polymyositis!?!

I went on a gluten free diet, stopped eating wheat and gluten last April...
I've had normal stools now since unless I eat gluten or wheat products.
My gut pain stopped totally...no longer have any intestinal pain or upset.
Unless I eat those forbiddens, then I'll have D'reah for few days.

I stopped taking the meds for Crohns, such as Immuran, Asocol, Pentasa, Methyltrexate....I'm 100% off ALL crohns meds!
I was Dx with Crohns years ago by blood test...but all test, biopsys for Ciliac Sprue comes back normal.
I've found many people have C-sprue despite normal testings!
So what does this tell you?!
I may never really have had Crohns disease!...
Perhaps would never have needed to have 2 sections, 3 feet of my small bowels removed and resected had I gone on the GF diet...who knows?!?!

Why I was never given B12 after my small bowel resections, is standard protocol!
The only place besides sublingual where B12 gets absorbed!!!
Is blatantly incompetant I was never given...even for Dx of Crohns alone, plus the years of D'reah!

I've lost respect for most doctors...especially those Neuro's, except the ones at Mayo....
They were awesome, kind, very repectful! So is my surgeon and the current Gasto.

I will spend the rest of my life trying to tell my B12 deficiency story to others...
One day I want to help change the way the B12 levels are read and tested.
There's got to be a way to change this....I will try, till the day I die!
This won't be easy because I've suffered a few missing brain cells in the process!....is embarrising, but I have to admit.
but maybe they'll listen to me just to get me off my soap box!

We can't change any of this if we'd never suffered this personally!
Perhaps is my reason for what I and a few others have gone thru....
I must find a purpose for all this, helps me deal with all this in some way.
Sometimes I wonder why my initials spell CRY....sigh....Tears of Joy now!
Blessinigs, Cheryl
PS...sorry this's so long...what could I have cut?

Hi crytears! I found my way here!

You couldn't leave anything out. As you know my story is similar to yours, not just as long or as super intense, but similar. The methyl-B12 I started taking a month ago is shaving definite results - my symptoms are improving and my lab value of homocysteine is dramatically improving for the first time.

A big difference is where your B12 was low "normal" (NOT!), mine was very normal . over 700. But obviously I have a problem converting it to methylB12 so have a functiona deficiency in my tissues. This leads to elevated homocysteine and neurological issues.

You don't know this yet, but my B6 has been elevated during this whole time . . . looking for answers to that brought me here where I found mrds' post linking high B6 with an inablity to convert it to its active form, P5P. So I am wondering how this plays into everything too.

By the way, I am very interested in that show 2 weekend ago you were talking about.

Glad to have found my way here .. glad to see you reposted your story!

TheresJ...looks like I've got some 'learnin' to do, I'm all ears!!
I know very little of what you're describing about B6...
I'm just begining to understand about the B12 suppliment.
I'd love to have gotten Homocystein and MM acid levels testing back then, but remember...
my doctors only beleived I needed to just take more of the anti seizure meds for my moderate level of Peripheral Neuropathy to mask the pain..
not to cure me or find the cause of this! Would have been too easy, cheeper too!
How obsurd!
Why on earth they never considered this after removing several feet of my small intestines...the ONLY place besides sublingual that absorbs B12!
Just having a long history of gastro intestinal problems, Crohns disease and Irritable bowel syndrome...is standard protocol to give B12 injections.
But did they? Did they even consider this when I asked, then pointed out I'd had a 3+ year bout of severe anemia where I needed blood transfusions every other week...My God!...My GOD!...what school did they go to?...were they even coherent when they took the antiquated subject of the nutrition, vits and supps and Krebb cycle classes? Passed out drunk maybe?...or perhaps they wanted to watch me suffer!
Just unbeleivable this got missed in me after seeing so many doctors...specialist...Neurologist! OMG!

Here's something I also wonder...people with Fibromyalgia have fatigue...could it be because of the irritable bowel one often has when they have FM, could they be B12 deficient thats causing their fatigue?
I wonder how this ties into fatigue in FM?!?!
I am willing to do just about anything to get this information out there!
No one should suffer a moment longer!
So I'm passionatly serious about making this known.
Blessings, Cheryl
Like my motto goes:
No well behaved woman ever made history!
PS...Does anyone have any ideas how we can make this subject a little more known than it is?
Perhaps lets get together write a book on this, get on Oprah show?
Write our senitors to get a bill past where labs change the standards they've got so wrong?
There is a way....we just have to find it!...we must!
I promise I won't do anything crazy...I'd never want to discredit anyones hard work in all this.
But I gotta tell you...my story alone is worth a few "rounds" with some naysaying rolleyed Neurologist on Maury Povich show!

Hi thank you for sharing your story. I have for myself often thought I had gluten intolerance but none of my tests show that it is. I have had so many stomach problems,sleep problems,pn,pain,on and off dizzy,breathing I could go on. I'm glad your doing better and found what helps you. As for getting the word out that would be amazing and I think also would hopefully get more research done and make people feel less alone. I know and I'm on the younger front but before last year when this happened to me I had no clue of many of these problems or struggles people go through. Its not that I was uncaring just uneducated. I have a friend who wrote a book that is at the stores but not for this issue but I feel it hits a limited amount of people. I think though if someone could get on a show that would spread the word and als spread the book idea. Thanks again