Where In The World Did My Memory Go? Could A Vitamin B12 Deficiency Be To Blame?

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WHERE IN THE WORLD DID MY MEMORY GO? Could A Vitamin B12 Deficiency Be To Blame? — by Catherine Morgan

Every day it seemed my memory became worse and worse. I would forget what I was talking about in the middle of a sentence. Even if I wrote things down so I wouldn’t forget, I would just forget that I wrote anything down. I would be driving, and forget where I was going. I would ask the same questions over and over again, not remembering that I had already been given the answer. When my house was quite, I would panic thinking I didn’t know where my children were. I was afraid to talk to people, knowing I would sound stupid.

Could these symptoms be part of my chronic fatigue syndrome? If so, how much worse was it going to get? Finally, when it got so bad I could no longer read a book or even watch t.v. without forgetting it all, and my son just became so frustrated that he told me he thought I just didn’t care about anything he was saying, I knew I had to get some help. But, as usual this was easier said than done. I had been complaining to my doctors about this for quite some time, but they thought it was just normal forgetfulness and I was making too much of it. By now, it was almost two years later, and I was getting much worse, so when I went into the doctor (a Neurologist, and a new one since I had just moved), I broke down and started to cry when I told him how bad this problem was becoming. Basically “sealing the deal” that I was just an anxious, depressed, emotional women…..and all my problems must be related to my “emotional” state. However, even though this doctor told me he did not believe in CFS, he agreed to run some test to see if I was suffering from a “real” disease, that he would be able to treat me for. Consequently, I left even more upset than I did when I got there. I either had to hope they found I was suffering from, Lupus, Multiple Sclerosis, or some other brain abnormality; or hope they found nothing, and in-turn not be able to do anything to help me with this problem that had become so hard to live with.

Since I was diagnosed with Chronic Fatigue Syndrome while being hospitalized many years ago, I was pretty sure that these new tests would come back negative, as they all did back then. At that time they told me my symptoms where being caused by CFS, because they had excluded all other disease processes. And since I also had a positive tilt table test, and was positive for the Ebstien-Barr virus, they were very certain of this diagnosis, and that is what I had been treated for…..with some success.

To my surprise I received a letter in the mail with a note (really…just a little note on some scratch paper), from someone at the Neurologist office, telling me that my B12 level was low and I needed to start giving myself B12 injections, a prescription was included. No call, no explanation….I just assumed this was how they treated patients in Florida. I tried to call the office and got a recording that told me I could leave “one” message and no more, the assistant to this doctor would call me as soon as they had a chance…..but they will “not” call back if any additional messages are left….basically you are punished for calling more than once, by not getting any return call.

After several days, I just went back to the hospital that I had the blood drawn from, and had to pay to get copies of my blood work. When I saw how low it was, I had many questions about how this could effect my CFS, and if I should alter my diet, and would the B12 shots help my memory problems? Of course I didn’t hear back from the Neurologists office (and I did have a follow-up appointment in another several weeks). So I called my new “primary care” doctor, hoping he could give me some answers. Since he had received copies of all the same results, he told me to come into his office to talk about them, so I wouldn’t have to wait until my follow-up with the Neurologist. The primary doctor told me that there was a very good chance that my memory problem would get quite a bit better, after taking these B12 shots. I told him that I remembered that many, many years ago (before my CFS diagnosis, but at the time I was diagnosed with Ebstien-Barr) I was told I needed to get several B12 shots at the doctors office, and I did. And then again, when I had been hospitalized, one of my treatments (I thought for the CFS), was to give myself B12 shots. I thought the B12 shots where to help with the fatigue and after about two years, my fatigue didn’t seem to be helped by the shots, and I was sick of having black and blue marks all over my legs, so I just stopped using them. My new doctor asked how my diet was, and I told him that I try to eat well (fish, lean meat, dairy, all have B12), so why is my B12 still low? Then he told me that I must have a condition that causes the B12 to not be absorbed into my system through my stomach, and that I will need to continue giving myself shots. He said he didn’t think the B12 would help with my fatigue, but that I should see improvement in my memory…….Well that was good enough for me, I would do anything to get my memory back, so I actually left this appointment feeling hopeful.

Within about two weeks I noticed a dramatic difference in my memory, and I was very happy. Even my kids noticed a difference. So, by the time I had to return to the Neurologist I was very happy, and thought he would see that I wasn’t a “crazy hypochondriac”, and see the improvement I had made, and maybe even tell me that this problem could be related somehow to my Chronic Fatigue Syndrome, especially if all the other tests were negative. Well, after waiting patiently in the office for over two hours (not kidding, close to three), this doctor came into the room to tell me that all my other neurological tests were negative. I thought that was a good thing, and I told him how I had noticed a big difference in my memory since taking the B12 shots, and asked if he thought this problem was related to my CFS. He said, that there is no such thing as CFS, and all my symptoms can be attributed to depression, and anxiety. He even went further to suggest that I was some kind of “druggie” because of my use of “uppers” and “downers”. I tried to explain, that I take one Provigil a day (to help with my energy), and one Ativan at bedtime (to help me sleep)…..both medications prescribed by doctors, and both I am taking “less” than the recommended dosage (in no way abusing either medication). He still insisted that Provigil was an “upper”, and that I should not be taking it. I came right out and asked him; “Do I look like I am on “uppers”? I feel exhausted, and always do, I sat in the same seat in your office for almost three hours, could someone on “uppers” do that?”. His response was, that they aren’t working so why keep taking them? And then he said he saw no reason for me to return to a Neurologist, since there is nothing wrong with me, and he walked out of the room. If that wasn’t bad enough, he then went into a room to dictate notes on my appointment that was within “ear-shot” of the office staff, myself, and other patients; where he continued to refer to me as someone using “uppers” and “downers”, and that his recommendation is to have me discontinue use of “uppers” and “downers”. I guess I don’t have to tell you that I left that appointment crying.

I have been to doctors that don’t relate to the “CFS” diagnosis, but that still treat me with respect and dignity, and understand that my symptoms are real and need to be treated. But, this was the first time in my entire life (all 40 years of it), that I was ever referred to as a “druggie”……I don’t even drink or smoke. It wasn’t until several weeks later when I went back to my primary doctor, that I finally felt a bit better about what this horrible doctor did to me. I found out that he has a reputation for being a nasty person, and people only go to him because he is the only Neurologist in my area. And since my primary doctor didn’t believe my medications needed to be discontinued, and he continued to treat me with respect and dignity, I left the appointment feeling happy that I had finally found a primary doctor that understood what I was going through. I have since also found both a cardiologist, and a surgeon, that I do need to go to on a somewhat regular basis, who also treat me with respect and dignity……which is all I ask.

This experience taught me two things, and I would like to pass them on to you.

Number One — Vitamin B12 deficiency is more common than most people know, even doctors. If you are having symptoms of confusion, dementia, or memory loss; you should be tested and treated for this problem. Here is some more information that you might find helpful: When your body doesn’t absorb vitamin B12

Number Two — Don’t let doctors make you feel bad about yourself. And keep searching for a doctor that treats you with respect and dignity, no one deserves less than that. And I suggest everyone go to this site RateMDs.com and rate both your good doctors and you bad ones. If you can’t find your doctor, you can add him/her. We as patients have to take back our power, these doctors work for us, and they need to be accountable for their behavior.
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ALSO SEE:

From Broken To BlogHer

INFORMATION ON CFS THAT YOU CAN PRINT OUT AND GIVE TO YOUR DOCTOR, WRITTEN BY DOCTORS, FOR DOCTORS.

VIDEOS THAT EXPLAIN CHRONIC FATIGUE SYNDROME, YOU CAN PASS THEM ON TO FRIENDS AND FAMILY.

MUSIC VIDEOS THAT I LIKE, AND THAT CAN MAKE YOU FEEL A BIT BETTER ON A BAD DAY.

TIPS FOR LIVING WITH CHRONIC FATIGUE SYNDROME.

If you have a chance please also add your information to my page on “Tell Me A Little About Yourself”.

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