Kaethe
11-23-2004, 06:47 PM
I am 22 have had PA for two years. My level after two years of injecting is 249. I feel awful all the time. Does anyone have any advise?
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View Full Version : Pernicious Anemia
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Kaethe 11-23-2004, 06:47 PM I am 22 have had PA for two years. My level after two years of injecting is 249. I feel awful all the time. Does anyone have any advise? Sponsor Marimac 11-23-2004, 08:19 PM I am 22 have had PA for two years. My level after two years of injecting is 249. I feel awful all the time. Does anyone have any advise? Over time your body may develop a tolerance to the amount of B-12 you are receiving. You might want to ask the medical provider to change the dosage of your B-12. Also there may need to be another check to make sure that PA has not become aplastic anemia not that they can evolve one into another but the bone marrow may have developed its own problems. Not to worry you just ask the questions to the doctor. Dotydp 11-25-2004, 09:41 PM I have just been newly diagnosed with Pernicious Anemia. I was just wondering...what kind of symptoms do you have to make you feel awful? I feel really awful also and am wondering if it is from the Anemia or if I have something else going on. Thanks for your reply! Marimac 11-26-2004, 09:50 AM Pernicious anemia does not have any symptoms at first. Gradually chronic fatigue sets in and it takes more hours of sleep to feel rested, or sleep becomes difficult to get. Some of the symptoms I experienced before treatment were leg cramps and sensation of muscles contracting in my calves. In the day time, I would sometimes be walking and my sense of balance would be off and I would feel pulled to the left or right of center which would cause me to have to do a double step to get my balance. My heart would palpitate meaning strong beats that seemed like I could see it if I looked down. I would get breathless from walking like most people do from jogging. I lost my appetite for healthy food, meat and vegetables and craved weird things like pretzels exclusively or peanuts only. Mentally I would feel hyper, but was not able to follow through and complete a task before starting another. My memory for names or words became unreliable. At times my speech would become slurred for no reason, just briefly. It seemed like my body would suddenly go limp for no reason. To make matters seem worse, I would retain a lot of fluid despite the fact I was not eating much. This of course made it look like I was gaining weight. When, I began to get the Vitamin B-12 therapy the water weight quickly disappeared and I had lost a few pounds. The rest of the symptoms gradually disappeared over a few months time. An MRI revealed that no damage had been done or was repaired by the B-12, however, I did learn along the way that unless the folic acid was also being replaced as well, the B-12 could not prevent all the symptoms. This is something I did not learn until the visit to the neurologist. Hopefully this will help those who are coming to this site. The main thing I learned in all of this is that the sicker you become with the pernicious anemia, the more difficult it is to cooperate with the therapy because there is a mental health component that kicks in that makes it difficult to understand how sick you are and that you have to take action. Slwm 11-27-2004, 08:09 PM Read Marimac's post and then let me tell you that many more things can happen to you. Remember, When your B12 is low enough every nerve in your body starts dying/degenerating. (Subacute combined degeneration) When I was tested I had no detectable B12 in my blood. My whole body was sort of numb to pain and pleasure but I had pins and needles or tingeling along with a freezing sensation. Bad memory problems. Couldn't even remember the names of close friends. Heart problems, vision problems, burning tongue, weakness in all muscles, many MS symptoms. Be sure to take care of this problem before the damage is irreversable. Stomach problems can make PA Worse. Anxiety and stress can make things worse too but PA I believe can make you more unable to handle stress. Dotydp 12-01-2004, 10:07 PM Thanks so much for the replies and info about PA. It all sounds too familiar. I just saw a Hematologist on Monday and have an appt. next week to find out results of a bunch of tests. turl 12-05-2004, 02:36 PM I am 22 have had PA for two years. My level after two years of injecting is 249. I feel awful all the time. Does anyone have any advise? Yes, RUN, don't walk, to the nearest health food store and get some methylcobalamin (methyl-B12). Sounds like you're having a hard time of converting the B12 (probably cyano-B12) into the useful forms (methyl-B12 and adenosylcobalamin). Also, you probably need some every day, and usually injections aren't all that often. You can take methyl-B12, sublingual, every day. At least 1000 mcg. With levels as low as you have, I'd take more. I'm currently taking 2000 mcg of methyl-B12/day and 2000-4000 mcg of hydroxo-B12 (it gets converted into methyl-, which is used in the brain and for nerve regeneration, and into adenosyl-B12 which is used at the cellular level). I'm covering all my bases. I was taking cyano-B12 with intrinsic factor (oral) but didn't feel much of a difference til I switched to methyl-B12. My breathing, which was HORRIBLE, is finally noticeably better. My intense fatigue is finally lifting too.....though I still have my days. I still have tingling in my extremeties, but I figure that as long as I've been getting deficient, it'll take about same time to heal....... Tab |
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