I was recently told I have a Vitamin B12 deficiency (below 175). I just found this website and want to cry.
For 18 months I have been going to my own doctor and sent to several others (neurologist, ENT, neurosurgeon, physical therapists, physiatrist). I have pages of notes that I have kept. It all started with a fainting spell 18months ago. I was told I had pneumonia and was put on antibiotics. However, over the next two months I had two other fainting spells. This was all accompanied with numbness in my L face, a bulging feeling in my L eye, ringing in both ears, lump feeling in my throat, incredible pins/needles sensations in my hands, tight band feeling around my upper arms, nonstop headache in the back of my head, burning sensation in my neck. I've also had periods of vertigo. I've had days where I can't drive because I feel so "not with it".
I was sent to a neurologist, then ENT. I've had 4 MRI's, a lumbar puncture, and multitude of other tests. Everyone kept telling me "everything is normal". I was put on Neurontin for 4 months to take the "creepy-crawly, pins/needles" feeling away. The only thing I saw from this medication was sleepiness, and dulling of tingling sensation. The 4th MRI of my neck showed a slight bulging disc. So I as then sent to a neurosurgeon, but he said it was extremely mild and that he thought the symptoms were definitely neurological. The neurologist however told me she could do nothing else other than raise the prescription strength. A second neurologist told me all my tests done previously were normal, get off the medication, it wasn't a tumor, MS, Lupus, Lyme Disease, etc. "go back to your primary doctor". I was sent to a physical therapist who then sent me to a physiatrist. I've had several Lidocaine injections in my back and neck which did take away the burning sensation in my neck.
However, after 18 months of numbness in my L face, ringing in my ears, a bulging pressure feeling in my L eye which has now become partially clouded vision to the L corner, and a tinging/numbness/heavy feeling in my arms and now feet - no diagnosis has been made. I am exhausted all the time, yet unable to fall asleep easily due to the nonstop humming/ringing in my ears - we keep a fan on in our room to add noise so the ringing isn't the only thing I hear. I used to run 140+miles a month, I am not able to run at all now. My running journal became my medical journal and I kept notes daily.
I went back to my primary doctor two weeks ago because I lost my vision momentarily while driving. I was coming off the highway and felt a twinge in my forehead and my heart felt like it was fluttering. My vision went from full, down to a black tunnel of nothing and then back again. It scared me so - I went immediately to my doctor's office. He ran an ekg and I was sent to a heart center for an echocardiogram. Nothing alarming was found.
Since then I have a fluttering (palpitations) randomly throughout the day. My hands feel numb/heavy and it's become painful to spread my fingers or toes. I can't clench my fingers to hook necklaces. I've found that I'm forgetful, have to write everything down for the day that I need to do, otherwise I forget most of my errands once I'm out. I've really questioned whether I should be driving. I've limited myself to short distances around town because I'm worried about another "spell". The numbness in my L face, hazy vision in the corner of my L eye, ringing in my ears has been constant.
I was sent to a new neurologist who ran a few tests. He called me within the week and told me to come back to the office. He said my Vitamin B12 level was very low - and that a year ago my records showed it being below 300. He said a year ago he would have been alarmed by my levels due to all the symptoms I was having - he says he is alarmed by anything under 500. He says he hopes there is no permanent damage since my levels have been low for so long.
I was sent back to my primary doctor for B12 injections. He wanted to start B12 injections without any further testing to find out why I have the deficiency. I said I wanted a reason, he ran some blood tests, however, called this weekend to say the tests for pernicious anemia was normal. In the meantime, I've had 3 B12 injections - subcutaneous - and he says I can now go once a month. However, much of the articles I've read say it should be a 5 day course, then weekly, then monthly - intramuscular.
I still have no answers and would like to know what is causing this deficiency. My doctor's message on the weekend was "I guess we have to decide whether to continue testing, or just go with the course of treatment of once a month injections".
I spoke to him this morning, he says any further testing would be gastric, our area hospital doesn't do this test, I'll have to go to Boston. I'd go to Timbuktu to get some answers.
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