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