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}