72F. Dementia, loss of memory, walks with walker, history of seizures,
diagnosis of pernicious anemia in 1960's but taken of B12 five years ago.
77F. Dementia, several months duration, paranoid--"You nurses are
going to poison and kill me". Physically aggressive, past psychiatric
69M. Dementia, significant deficits of recent memory. CT finds compatible
with mild, diffuse cerebral atrophy.
71M. Dementia, difficulty walking, poor memory and calculation. Became
combative when he was to receive B12 IM.
72F. Dementia, decreasing mental status over two years, paranoid ---"Neighbors
are spying on me and want me to raise their kids" Loud, hostile, violent
prone, unkempt, tries to bite and hit, hears voices that frighten her, on
B12 MCV went from 120 to 100.
63F. Dementia, paranoid- repeatedly called police about "false burglaries."
Had numerous traffic tickets and was not paying her bills. Forgetful for the
past two years, accusatory, confused, some numbness in left ankle. uMMA went
from 14 to 2.0 after B12.
71F. Visual disturbances, history of peripheral neuropathy, dizziness.
After 9 months of B12 therapy, still complains of numbness and tingling in
lower extremities, staggering when walking, and nervousness.
49F Marked peripheral neuropathy and cord problems, experienced leg numbness
for 10 years, can't button clothes, requires walker and stand-by assistance
at all times for safety.
56M. Numbness in hand for 1 year diagnosed as carpal tunnel syndrome.
"Hurts to drive a car". Continuing weakness, gait problems and numbness
in feet and hands. Brain scan, EEG, and spinal tap. Taste decreased -- no
flavor. Gait improved after 1 month of B12.
36M. Weakness and orthostatic dizziness for the last 2-3 months, abnormal
60M Gradual onset and progression of leg weakness and numbness. Past
surgery to decompress lumbar stenosis (2 years ago) and cervical laminectomy
(1 year ago) because of pain in arms and cramps in legs. Uses walker, hands
quite weak, EMG's very abnormal.
51M. Myelopathy for past eight years. Spasticity, jerking of legs so
hard he has kicked himself out of bed. Partial gastrectomy (75%) 22 years
previously and has dumping syndrome. Degenerative spinal disease believed
to be caused by a nutritional B12 deficiency. uMMA reduced from 34 to 4.7
and repeat Schilling test was 18% after B12 IM.
24M. Mild mental retardation and poor psychomotor development with a
past history of undiagnosed neurologic dysfunction. Myelopathy, spasticity,
increasing rigidity of back and lower extremities, unable to relax. One month
after beginning B12 therapy, uMMA reduced from 37 to 3.2. Schilling tests:
I: <2%; II: 18%.
"Early detection and treatment appears to be necessary for correction
of B12 deficiency mental abnormalities. For example, patient 1 and 2 with
several months dementia improved with one month of B12 therapy. They were
more interactive and less hostile whereas patients 6 and 7 with dementia for
over two years showed little improvement after 1 month of B12 therapy".9
Subject 1 age 40 at diagnosis. I wrote my "story" of my illness
about 20 months after I first became ill and I have referred to this narrative
to refresh my memory. At no stage have I taken folic acid. The symptoms first
showed on January 16, 1991 two days before my 40th birthday when I awoke to
find my left big toe was numb. I put up with the annoyance for a week and
then went to my GP who took a blood test and stuck pins in my legs. I was
not anemic (hematocrit = 44.1, normal 34-47 and MCV = 87.6, normal 82-97).
The numbness moved slowly up my left leg and I was referred for a nerve conduction
test on April 2 which showed something was wrong.. By this time the numbness
had reached my knee but was just irritating. Two to three days after the nerve
test, I underwent a catastrophic deterioration. My right leg became affected
and I experienced "blanket" numbness form the waist down. Pins and
needles occurred within days and I lost all sensitivity in my hands. I couldn't
button clothes or feel a pen. I could not even write my signature clearly.
Not only did these new symptoms start to appear within day, the speed of the
development of symptoms accelerated rapidly. What had been a nuisance over
6 weeks became a real problem within days of the nerve conduction test. My
walking started to be affected and by the middle of April, I could no longer
feel the ground beneath my feet and my left leg was swinging out at will.
I could no longer control my walking. I became bedridden and then developed
excruciating pains which shot up my spine into the base of my skull, far worse
than labor pains! My GP referred to the Neurology Dept for extensive testing
including an MRI ruling out MS. The serum B12 blood test on May 30 registered
90 (normal 200-900) There was euphoria in the ward when b12 deficiency was
diagnosed. It did come as disappointment that my recovery was quite slow.
I started injections in June (5 injections of 1000 micrograms B12 IM within
10 days) and six weeks later I could not walk without support, sign my name
legibly, or button clothes as my 11 year old daughter was dressing me. In
July my Schilling test was normal. The bands at the base of my spine continued
to plague me and I was permanently tired. I would drag myself to bed and surround
myself with hot-water bottles, one on the base of my spine, one on my stomach
which felt as if being squeezed relentlessly into a steel corset several sizes
to small. However, gradually there was cause for optimism. The electric shocks
to the spine (and the base of my skull) stopped and the violent temperature
problems disappeared and my relief was profound. By Christmas, six months
into treatment, my walking was slowly improving and could place my feet with
more certainty. The 'pins and needles' had changed from the active 'prick'
of pins and needles to an ever present dead feeling of grittiness but sensitivity
was returning to the fingers. Agonizing stiffness in my toes and left leg
began to ease back to the point where I could live with the pain. I tried
going back to clerical work on a limited basis. Within 3 weeks control of
my right leg was virtually impossible and mentally I was at my lowest ebb.
A physiotherapist came to help me with my mobility and all of a sudden I possessed
a wheelchair and a walking stick. Now 9 years later my progress has been slow
but definite. I am damaged but able to enjoy a quality of life and maintain
my independence. I have injections every 4 weeks. I can walk but only short
distances and cannot cope with steps due to these infernal ever-present and
painful "bands" around my waist and pelvis. My left leg remains
stiff, painful and numb in places. I still have pins and needles permanently
in my hands and feet which burn and which limit my sensitivity. I cannot feel
small coins or fiddly items. These symptoms I can live with, irritating though
they definitely are but it is the "bands' that I can get no relief from.
If I can be of any help in your clinic's advertising, I would be more than
pleased to help to spare other people from the torture of this illness. What
really annoys me is that I deteriorated so rapidly and have been left permanently
damaged for the lack of a specific test of B12 deficiency. AH, UK
Subject 2 age 30 at diagnosis. I'm happy to help in any way I can. I would
hate for anyone to go through what I did. It started when I felt like I was
having shin splints in my legs. Didn't think much about it. Then my legs started
getting weak and they would shake when I went down steps and things. The aching
increased until it was constant and I had sharp pains in them too. I kept
saying it felt like nerve pains. They also started to feel bruised. The pain
got so bad, I was taking Tylenol and Advil every 2-3 hours just to get through
a day. My walking got really bad. My legs just didn't work right and I had
to convince myself they would walk. On 3/4/96 I went to the doctor and the
nurse practitioner said my legs were tired and prescribed anti-inflammatory
medicine. Within two weeks, my arms became involved as this whole process
had been going on several months now. They hurt, felt bruised, and I had no
finger coordination. I had no strength. I could not hold a cup or open jars.
I spent most of my time lying around praying for a day without pain. I had
almost lost all function in my arms and legs and the pain was indescribable.
On 3/18/96 returned to the doctor and saw my DOCTOR. She suspected MS. Extensive
testing was done to include blood work, serum B12 level and MRI of the brain
which ruled out MS. On 3/18/96 serum B12 level was 246 pg/ml (normal 250-1100)
, folate = 2.6 (normal >2.9), hematocrit = 39.1 (normal 37-47), and MCV
= 90 (normal 79-98). The Schilling test was normal at 22%. On 3/22/96 started
weekly B12 injections and on 5/1/96 injections were decrease to every other
week. I noticed right before it is time for another injection, I began developing
some burning sensation on my tongue. With the injections it took about 6 months
for my nerves to heal. An EMG showed no permanent damage for which I was told
I was lucky. I do still have some fine motor skill problems, my hands cramp
some when I use them a lot and my legs will weaken if my B-12 goes too low.
My energy level is still not all it should be but am much better than a year
ago. I am not a vegetarian. This illness just came out of nowhere and it was
really awful!!!!! KF, MO
Subject 3 age 28 at diagnosis. It is nice to hear other stories then I don't
feel like the only one. Some of the symptoms were/are leg tingling like pins
and needles. I thought it was going from winter to summer and you have like
2 weeks of itches due to the change in weather and dry skin, however, it was
not itchy but pin and needles and lasted longer than 2 weeks. I was bruising
real easily too, having red dots along with bruises up and down my legs like
broken capillaries though they would come and go. I am a sleeper, but not
like I was. I would come home from work with my eyes half open and then could
not remove myself from the couch. At work I would be exhausted too. If I forced
myself to exercise I would barely make it through my routine. Then I would
go home and not be able to move. I was exhausted! If I went anywhere and had
to stand my legs would ache, honestly even when I did nothing my legs ached.
My legs would fall asleep for no reason. My mood swings were horrible. I was
going through a stressful time anyway, however I was not handling things as
I normally would have. I was very irritable, quick to jump at things and things
would really get to me, that normally I wouldn't even notice. I just had no
energy to fight it. Of course, the stomach aches which could have been also
form irritable bowel syndrome and then my gums turned bright red and were
swollen ever so often which the doctor said was one of the signs or symptoms.
That's basically what I can remember. I think it all started in January, but
may have been longer than that. Like I said I am a sleeper and I lived on
"power naps" except my power naps lasted three hours and I could
still go to sleep early to get up for the next day to get through school,
which came after work. My friends and boyfriend would laugh because I needed
a nap to do just about everything. The last month or two I would say it was
really noticeable because I was too tired to shop and I would sleep a weekend
away. I went to my doctor because I couldn't handle it anymore. I knew something
was wrong. My friends and boyfriend were upset with me because I was always
too tired to do anything. I was just really depressed about it all and usually
I am the happiest one of the group always cracking jokes and I no longer was.
Also my pins and needles in my legs scared me to death. I thought I had cancer
or some strange disease and I was near the end because all I wanted to do
was sleep. OK that is a little over dramatic but in all honesty I really thought
it. On 5/24/00 blood tests were ordered showing slight anemia with hematocrit
= 36.5 (normal 37-47), MCV = 88.5 (normal 79-98) and serum B12 level = 190
pg/ml (normal 200-800). On 6/2 I started taking 500 microgram tablets daily
as I was scheduled for my first shot on 6/8. On 6/6 my MMA test was 2.7 (normal
<3.8). I know the tablets did not work real well. THE SHOT DID. By 6/20
I had 2 shots and the energy I have is great. I honestly wonder how long this
has been going on. I am a new person, it is just wonderful. I am supposed
to get another shot this week which will make three. My legs no longer ache
as they did before. The only downside to this, if in all honesty there can
be one, is I have trouble falling asleep at night. Naps during the day are
out of the question, believe me I have tried. I am so awake it is almost funny.
A lady I work with her husband is having the same symptoms, the leg tingling,
etc. He is getting tested this week for B12 deficiency too. I read the symptom
list that was enclosed with the kit and it is funny to see how many symptoms
I had and just thought I was losing it! hahaa Nice to know I wasn't. RR, FL
Subject 4 age 34 at diagnosis. I am a 34 year old female with multiple symptoms
similar to those listed on this site. My neurologist has just said that I
have a B12 deficiency that appears to be causing all of my problems. We originally
thought MS, even a stroke at one point because of a strange MRI (since ruled
out). My symptoms started about 6/98 in my feet with deep pain and dull aches.
They would ache and fall asleep and were very painful in the morning getting
out of bed. I thought it was heel spurs. I would also have tingling feelings
at different times of the day and it was very hard to get up form the floor
where I work most of the day doing preschool speech therapy. I was not steady
on my feet getting up. Lately it has been more painful with tingling, numbness
and sharp pains moving up my calves, knees, and back of my legs. I also now
experience aching feelings, tingling and numbness in my arms and hands. I
have also been waking up in the middle of the night because of numbness and
discomfort in my arms. I could not blame that on heel spurs so then I decided
to go to a doctor. Now the numbness had also started in my face as the left
side of the lower lip causes me to awake several times since early Nov. 1999.
Stiffness, soreness, pain, tingling is worst in the evening. Sometimes when
I lie down on the couch I can barely get up again. Discomfort is even on the
sides of my back. Sometimes it is hard to get a good breath because of discomfort.
Sometimes I see black holes, white spots, or blue squares. Sometimes the image
of something I have just seen stays in my eyes after I have turned to look
in another direction. For example when driving a car I turned to the left
to make a turn and the red brake lights of the car in front stayed in my line
of sight. On 10/9/99 my blood tests showed no anemia with hematocrit = 42.3
and MCV = 89. On 12/3/99 my serum B12 level = 165 pg/ml (normal 179-1132)
and on 1/4/00 uMMA = 5.5 (normal < 3.8) both indicating B12 deficiency.
On 1/6/00 I began B12 injections and on 3/18/00 a repeat uMMA = 2.6. A nerve
conduction test on 1/17/00 indicated "a mild delay in peroneal nerve,
consistent with a peripheral neuropathy ". On 4/22/00 my symptoms had
improved nicely with some pain and discomfort continuing but nothing like
it was in Nov. and Dec. I was receiving B12 injections 1 every 2 weeks. Subsequently,
a gastroenterologist suggested I stop taking B12 because he doubted that that
was my problem. As an experiment , I had a shot on 5/9/00 and not another
one until I saw the internist on 7/11/00. Sure enough, my body responded negatively
with no shot. Examples of responses included leg pains, numbness in arms in
middle of night, etc. I found a female internist who appears to have a clue
about pernicious anemia with neurological issues. She didn't feel the need
to do a Schilling test if I was responding to shots. My Neurologist agreed
and further stated that he had not done a Schilling test in years. The reason
I think I have thrown other physicians off is because I am not also showing
anemic signs in tests. My Internist said stay on shots for the rest of my
life. She had just gotten back from a conference where topic of B12 deficiency
and neurologic damage was discussed. I am thrilled because it has been very
frustrating to deal with people who had never dealt with a case quite like
mine. I visited my neurologist who diagnosed me in Dec. and his medical student
was intrigued stating he had never seen one like me. OH JOY! On 8/13/00 I
continue to have nerve pain, numbness, etc. in my legs. Less frequently, I
have numbness in my arms at night. Overall, however, things are much better
being very manageable and I have much for which to be grateful. I take 100
mg Neurontin daily for discomfort. Pain fluctuates. The discomfort is definitely
better than before the shots. Other symptoms such as falling, vision, memory,
balance, etc. are much better with few episodes lately. On 12/26/00 I realize
this year how much I have to be grateful for when I compare my health to last
year. JM, SC
Dr. Norman comments "Although these laboratory abnormalities were of
modest magnitude, most of these women had significant neurologic findings
which first brought them to medical attention.
This population merits
further evaluation since it has not been considered prone to cobalamin (B12)