Discussions By Condition: Nerve conditions

Is a b12 level of 185 okay?????

Posted In: Nerve conditions 18 Replies
  • Posted By: PAPERTIGER
  • December 27, 2008
  • 07:09 PM

I'm 30 have a healthy diet but have been very sick for the past 5 years. I am trying to find out why I am deterioating. I look horrible and don't look like myself anymore. I have been to my PCP who can't seem to get my diagnosis right and now I am on my third neurologist. He recently had me take a B12 level test. It came back at 185. I was told this is low but not alarming. Not sure how true it is. My PCP didnt even tell me what to do. The neuro suggested I get shots but the PCP said "NO just a daily B complex vitamin". I'm confonfused as to whether or not B12 can bring on these symptoms that I'm suffering from. Please help, I have no quality of life....

Here are a list of my symptoms worst to mildest.

Headaches - 10
Memory loss - 10
Confusion - 9 ( directions, work, understanding instructions)
Breathlessness - 8 (I can't get out a full sentence w/out huffing)
Eye pain - 8 (behind and in my eyes, when I have a headache)
Back pain - 8 (this is recent, lower back right about buttox)
Recent onset of heartburn. 8 - VERY PAINFUL when I eat certain stuff. :eek:
Tiredness - 7
Intolerance to exercise - 7 (brings on an instant headache)
Irritability 6
Itchy skin - 6
Acne - 5 at age 26 broke out w/ severe cystic acne, took Accutane. Now clear but still have occasional small (non cystic) breakout.

I will say the headaches are different than a migrane (Need to be clear). I do get migranes too, but these do not concern me, I handle them like a grain of salt! The pressure headaches last a long time and are SCARY. They fall in line w/ Intracranial Hypertension symptoms however I have not been diagnosed until I have a spinal tap (coming in Jan). I feel like pressure is building inside my head when I have these. Unbearable pain. I currently take Topamax 200 mg daily and a blood pressure med (just for the headaches).

I'm trying to get a diagnoses. Not sure if this is intercranial Hypertension or just causes from my B12 Deficiency results. Also, how much B12 supplement should I take. My PCP had his secretary tell me just to go to GNC and grab a daily vitamin. I grabbed the GNC Big B Bcomplex. I have been taking 1 daily after I eat dinner. Haven't noticed any difference in two weeks yet. Is this right. Is 185 for a B12 level alarming???

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18 Replies:

  • Yes, Yes, Yes!!! Get on the B12 misdiagosis thread and post your symptoms there. You are dangerously low! METHYLCOBALAMIN B12 is the form of B12 to get. Stay away from cyanocobalamin B12. I suggest getting Jarrows Methyl B12 5000 mcg and take these daily and find a doc who can order Methyl B12 injections. Please get on that thread and talk to those folks - they are very knowledgeable. B12 deficiency causes irreversible neurological damage. Shame on that doctor who dismissed it so casually. Best wishesDOM
    acuann 3,080 Replies
    • December 28, 2008
    • 02:58 AM
    • 0
    Flag this Response
  • I hope my experience can help someone. Please feel free to question or respond. You are not alone. You are not crazy. If you have B12 deficiency and are just starting injections, be patient! IT TAKES TIME! I know you wanted to feel better yesterday or last year. I know you want to eat a regular meal and not suffer. I know you want to wake up and feel strong and alert. I know you want to be pain free. I know you want your eyes to work properly. I know you want to stop feeling like you want to jump out of your skin, or lash out at someone. I know you want to be able to walk without feeling vertigo or stumbling against the wall. I know you want the depression to go away.If your B12 level is under 300 and your doctor is not giving you injections, get another doctor! If your doctor wont check your level, get one that will!A good level is 500 or higher. 300 or lower causes neurophyciatric symptoms! Brain symptoms! If this sounds like you call your doctor tomorrow! Again, you are not alone!This is what happened to me:Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and tired more. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers. This slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate(stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.In March of 2005 still getting worse. Doctor ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers and antidepressents! Ever try amitryptalene? Put me out a couple of days. Doctor usless never heard me when I said I dont want anything thats going to make me feel groggier! Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. NegativeI was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles and hands had slight tremor all the time. Walking: stumbled frequently (no I dont drink) walls are my friend and I still have that problem. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.Muscle spasms: in arms and restless legs ( still have restless legs)Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. Nobody ever explained that one! Checked and no diseasesLight headed: vertigo, just not alert, felt high everyday.Nauseated: everyday, strong odors like bus, smoke or gasoline made me worseCold all the time, not chills, just coldBladder: frequency and incontinent also UTIWeight loss: Went from 5'6 130 lbs to 115lbs, way too skinnyShort term memory: terrible and doctors blow it offSpeaking: hard to get words out and make senseSkin: sensative, hurt when itching selfShock feeling: back of neck (scary) felt like cattle prod might feelHeart: palpatations always at night in bedPain: in places I never felt it before. back and neck, burning, stabbing pain Doctor says, your not getting any younger you know. I say its not normal, I know my body!Muscles: soreness..shoulders, neck and backDepression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. All totally not me. Have never been prone to depression.I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said I'm not better! He gave me one week. I had to go because of disability. I lasted one week and was back in ER. They gave me some stomach concoction and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.OK then. I'm home, very ill, know this doc is a quack, so I need a new course of action. I feel alone, scared and frustrated. I have a job I can't do, a family and house to take care of and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work. Dr. Mary would take my chart home and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth. I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top and lobster. Within a week of surgery I was way worse. Could not believe it. Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentance. I have a sweet and caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed. In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband and he said to call the doc. Dr. Michele ordered it and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience. I had shots for 6 months before I felt anything! It took almost 2 years to heal along with physcial therapy to get my body going again. I was a mess!Its a slow comeback, but it is a comeback! I still have stomach upset once in a while. My eyes will never be the same. The pain is my biggest beef. Im back to work and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. No meds, Do not want any. Stomach can not tolerate them anyway.If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive, and pretty much well. If this is as good as I get, I can deal. I found out after the fact that my Dads Dad had pernicious anemia. Inherited?My regular Dr. now screens all patients at their physcial for B12 because of me.I highly recommend the book "Could it be B12" to anyone suffering with this problem. The woman who inspired it lives in my neighborhood.A few months after starting injections, I tried sublingual B12. My level jumped right up. Try it. I still do both and feel good when my level is 600 or higher.Again, you are not alone.Peace, Cindy
    cyndyd 458 Replies
    • January 11, 2009
    • 01:38 AM
    • 0
    Flag this Response
  • Dear Papertiger, When you finish reading my story, please contact me. I would very much like to talk to you. Use my e-mail if its easier. I really have been there.
    cyndyd 458 Replies
    • January 11, 2009
    • 01:47 AM
    • 0
    Flag this Response
  • I hope my experience can help someone. Please feel free to question or respond. You are not alone. You are not crazy. If you have B12 deficiency and are just starting injections, be patient! IT TAKES TIME! I know you wanted to feel better yesterday or last year. I know you want to eat a regular meal and not suffer. I know you want to wake up and feel strong and alert. I know you want to be pain free. I know you want your eyes to work properly. I know you want to stop feeling like you want to jump out of your skin, or lash out at someone. I know you want to be able to walk without feeling vertigo or stumbling against the wall. I know you want the depression to go away.If your B12 level is under 300 and your doctor is not giving you injections, get another doctor! If your doctor wont check your level, get one that will!A good level is 500 or higher. 300 or lower causes neurophyciatric symptoms! Brain symptoms! If this sounds like you call your doctor tomorrow! Again, you are not alone!This is what happened to me:Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and tired more. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers. This slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate(stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.In March of 2005 still getting worse. Doctor ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers and antidepressents! Ever try amitryptalene? Put me out a couple of days. Doctor usless never heard me when I said I dont want anything thats going to make me feel groggier! Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. NegativeI was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles and hands had slight tremor all the time. Walking: stumbled frequently (no I dont drink) walls are my friend and I still have that problem. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.Muscle spasms: in arms and restless legs ( still have restless legs)Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. Nobody ever explained that one! Checked and no diseasesLight headed: vertigo, just not alert, felt high everyday.Nauseated: everyday, strong odors like bus, smoke or gasoline made me worseCold all the time, not chills, just coldBladder: frequency and incontinent also UTIWeight loss: Went from 5'6 130 lbs to 115lbs, way too skinnyShort term memory: terrible and doctors blow it offSpeaking: hard to get words out and make senseSkin: sensative, hurt when itching selfShock feeling: back of neck (scary) felt like cattle prod might feelHeart: palpatations always at night in bedPain: in places I never felt it before. back and neck, burning, stabbing pain Doctor says, your not getting any younger you know. I say its not normal, I know my body!Muscles: soreness..shoulders, neck and backDepression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. All totally not me. Have never been prone to depression.I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said I'm not better! He gave me one week. I had to go because of disability. I lasted one week and was back in ER. They gave me some stomach concoction and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.OK then. I'm home, very ill, know this doc is a quack, so I need a new course of action. I feel alone, scared and frustrated. I have a job I can't do, a family and house to take care of and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work. Dr. Mary would take my chart home and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth. I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top and lobster. Within a week of surgery I was way worse. Could not believe it. Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentance. I have a sweet and caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed. In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband and he said to call the doc. Dr. Michele ordered it and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience. I had shots for 6 months before I felt anything! It took almost 2 years to heal along with physcial therapy to get my body going again. I was a mess!Its a slow comeback, but it is a comeback! I still have stomach upset once in a while. My eyes will never be the same. The pain is my biggest beef. Im back to work and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. No meds, Do not want any. Stomach can not tolerate them anyway.If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive, and pretty much well. If this is as good as I get, I can deal. I found out after the fact that my Dads Dad had pernicious anemia. Inherited?My regular Dr. now screens all patients at their physcial for B12 because of me.I highly recommend the book "Could it be B12" to anyone suffering with this problem. The woman who inspired it lives in my neighborhood.A few months after starting injections, I tried sublingual B12. My level jumped right up. Try it. I still do both and feel good when my level is 600 or higher.Again, you are not alone.Peace, Cindy
    cyndyd 458 Replies
    • January 11, 2009
    • 02:11 AM
    • 0
    Flag this Response
  • I hope my experience can help someone. Please feel free to question or respond. You are not alone. You are not crazy. If you have B12 deficiency and are just starting injections, be patient! IT TAKES TIME! I know you wanted to feel better yesterday or last year. I know you want to eat a regular meal and not suffer. I know you want to wake up and feel strong and alert. I know you want to be pain free. I know you want your eyes to work properly. I know you want to stop feeling like you want to jump out of your skin, or lash out at someone. I know you want to be able to walk without feeling vertigo or stumbling against the wall. I know you want the depression to go away.If your B12 level is under 300 and your doctor is not giving you injections, get another doctor! If your doctor wont check your level, get one that will!A good level is 500 or higher. 300 or lower causes neurophyciatric symptoms! Brain symptoms! If this sounds like you call your doctor tomorrow! Again, you are not alone!This is what happened to me:Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and tired more. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers. This slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate(stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.In March of 2005 still getting worse. Doctor ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers and antidepressents! Ever try amitryptalene? Put me out a couple of days. Doctor usless never heard me when I said I dont want anything thats going to make me feel groggier! Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. NegativeI was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles and hands had slight tremor all the time. Walking: stumbled frequently (no I dont drink) walls are my friend and I still have that problem. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.Muscle spasms: in arms and restless legs ( still have restless legs)Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. Nobody ever explained that one! Checked and no diseasesLight headed: vertigo, just not alert, felt high everyday.Nauseated: everyday, strong odors like bus, smoke or gasoline made me worseCold all the time, not chills, just coldBladder: frequency and incontinent also UTIWeight loss: Went from 5'6 130 lbs to 115lbs, way too skinnyShort term memory: terrible and doctors blow it offSpeaking: hard to get words out and make senseSkin: sensative, hurt when itching selfShock feeling: back of neck (scary) felt like cattle prod might feelHeart: palpatations always at night in bedPain: in places I never felt it before. back and neck, burning, stabbing pain Doctor says, your not getting any younger you know. I say its not normal, I know my body!Muscles: soreness..shoulders, neck and backDepression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. All totally not me. Have never been prone to depression.I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said I'm not better! He gave me one week. I had to go because of disability. I lasted one week and was back in ER. They gave me some stomach concoction and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.OK then. I'm home, very ill, know this doc is a quack, so I need a new course of action. I feel alone, scared and frustrated. I have a job I can't do, a family and house to take care of and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work. Dr. Mary would take my chart home and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth. I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top and lobster. Within a week of surgery I was way worse. Could not believe it. Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentance. I have a sweet and caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed. In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband and he said to call the doc. Dr. Michele ordered it and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience. I had shots for 6 months before I felt anything! It took almost 2 years to heal along with physcial therapy to get my body going again. I was a mess!Its a slow comeback, but it is a comeback! I still have stomach upset once in a while. My eyes will never be the same. The pain is my biggest beef. Im back to work and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. No meds, Do not want any. Stomach can not tolerate them anyway.If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive, and pretty much well. If this is as good as I get, I can deal. I found out after the fact that my Dads Dad had pernicious anemia. Inherited?My regular Dr. now screens all patients at their physcial for B12 because of me.I highly recommend the book "Could it be B12" to anyone suffering with this problem. The woman who inspired it lives in my neighborhood.A few months after starting injections, I tried sublingual B12. My level jumped right up. Try it. I still do both and feel good when my level is 600 or higher.Again, you are not alone.Peace, Cindy
    Anonymous 42,789 Replies
    • January 11, 2009
    • 03:50 PM
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  • Cindyd, Thanks for responding to my issues. I appreciate the guidance. You've really been through a lot too. I am so hopeless. I'm not even sure what type of doctor I should be seeing. My PCP will only give me the 1 a day B Complex vitamin. He won't do the shots. He's making me wait for additional blood work months down the road. My biggest question is does B12 def cause the bad headaches. This is my biggest problem. I have so much pain it's truly unbearable. I noticed you didn't mention any headaches. Just this week alone, I've had a headached 5 out of seven days. I woke up feeling okay this am, and then took a nap around 1. I woke up w/ naueseau and a very bad headache on my left side near my left eye. Also, did you experience the breathlessness? I feel it worse at certain times. Today I'm not bad but on some days I cant make out a full sentence w/out sounding like I'm 90. I going to try to get to the library tomorrow to check out that book you've recommended. Sometimes I feel so horrible that I feel I can't work. But I'm not out on disablity. I go to work everyday and it's so difficult. I just can't focus, I'm always tired, and my head ALWAYS hurts. Oh yes, and my back pain has gotten worse. The pain is right above my behind area. Where my back sort of curves. I've been like an old lady just trying to move from one side to the other during the night or to get up to go to the bathroom. I feel so stiff or frail. It's terrible. I'm only 30. Why is this happening to me??????
    PAPERTIGER 6 Replies
    • January 11, 2009
    • 10:46 PM
    • 0
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  • Hi! Hope you are having an ok day. Wow, I done know how I managed to get my last post on here 3 times. Im new to computer stuff. Just got this laptop for xmas. Dont know how to delete the 2 copies. Anyway gosh! Why the heck doesnt your doctor get u started on injections. You obviously arent absorbing B12. You can pop the supplements all you want. If they go through your stomach thats the problem! U need injections!!!!!!!!! As you read about me it took 6 months of weekly shots to feel one bit better. It was a slow process and there were many days I thought it was never going to work. Find a good neurologist. He will know what to do better than a regular doctor.Your not the first person I've talked to that cant get a doctor to act on a level like that. If you have researched this, you should know that symptoms dont appear until you are very sick. Takes a long time to come on and a long time to go away. The longer u are low level the worse your chances are of recovering completely. Especially the neurologic problems. I never had headaches like you. We are all different tho. Wait till you get that book! Amazing stories! I know how you feel about the stomach stuff. It sucks! People dont understand what its like to have a stomach ache everyday! It grates on the nerves! Can you get to a neurologist? Have you had an MRI on the brain? Im 50 and in great shape. The wemon I work with all hate me. My sons friends call me a cougar! That said Lol, I work hard and its all physcial. But I feel everything I do now. Neck, elbow, hip, leg, back, all of it came on after I got sick. Some doctors say, "your not getting any younger". I say bull----!! I know where this came from. You should show your doctor my other post. Copy it and take it with you for your next appt. If you cant get him to get your injections started, get someone who can. Let me know if you read the B12 book. Im usually not online till evening. Take care Cyn
    cyndyd 458 Replies
    • January 13, 2009
    • 05:13 AM
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  • papertiger, go to B12 page and look on page 551 by Freddd 5504 he gives all kinds of symptoms of B12. Let me know if they sound like you. You wont believe how many there are!
    cyndyd 458 Replies
    • January 15, 2009
    • 04:56 AM
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  • papertiger, go to B12 page and look on page 551 by Freddd 5504 he gives all kinds of symptoms of B12. Let me know if they sound like you. You wont believe how many there are! Hi Cyndyd,I tried to post earlier but it didn't take. I went onto the page you suggested and My gosh, I have so many of those symptoms. I can't remember anything and I'm usually in a brain-fog. It's terrible not remember what someone just told you or directions etc. One symptom I was looking for particularly is back pain, it lists general body pain, but lately my back is killing me. It started just over a month ago. It feels like my spine just above my butt is shattered or something or just getting weak. It has been sooo difficult to change positions in bed, get out of bed, walk up stairs etc. I feel sooo old. I look like a 90 year old. The other day, when I moved in certain positions during the day, I would get a jolt of pain in different areas of my back. I'm not sure what the heck is going on or if this has anything to do w/ B12 def. The pain just felt so bad. Also, I had the bloating, UTI symptoms (I was actually seen by my Gyno) because I was concerned w/ some massive bloating I had about 8 months ago, She did a UTI test (normal) as well as some other tests. She said I looked normal and then it went away. He mentioned those symptoms. I also had the false positive pap. She told me I should just be extra diligent w/ my annuals. Something w/ the cells being abnormal was all she said and that it is pretty common for that to happen. So many of the same symptoms it just seems like I don't have all of them consistently. I do have memory loss, lack of concentration ability, headache (severe), tingling, sensitivity to light and especially smells. Things bother me very much. I sit in an office and keep the windows shut. everyone gets so mad. They just don't understand how bad and how much it bothers me. The cold is bad too. Although, I am usually HOT all the time so much that I sleep w/ my heat off and I'm in New England. For whatever reason, some days just walking from the car to the building at work can be sooo painful. My toes start hurting so bad, they become numb from the coldness. Well, I have to follow up w/ my doc. I'm going to check out that book on Sat probably. I hate to sound like a hypocondriak when I see him. He probably thinks I'm nuts. But who would ever want to feel this crappy every day. Especially my headaches. They're just unbearable. Cyndy, thanks so much for your continued info and support. You've been great!:o
    PAPERTIGER 6 Replies
    • January 15, 2009
    • 06:49 PM
    • 0
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  • Hi again, please don't give up ok? I had those same symptoms except the headaches. I did have weird pain in places I never had before I got sick tho. Shocks in back of my neck, pain that radiated from neck, up over head to eyes. Pain in upper middle back that burned. Chest soreness. Felt like ribs and muscles were bruised to touch. My neck pain was really bad. It seems like any place my body might have been having problems (joint wise) appeared, when I never knew or felt anything there before. I started injections in 2006. When I felt good enough to go back to work, I first had to get physcial therapy to build my body back up. I had lost 15-20 lbs and most of my muscles. Again I've always been fit. Worked at it always. I hated to look in the mirror. Ugh! The bones! Anyway, I still use physcial therapy and chiropractor to maintain the pain. Neck used to be my biggest complaint. It's better, not fixed. I have to stretch daily. B12 messes up joints and muscles. I walked 2x a day when I was sick, no matter how I felt. Just knew I had to keep going. Tho I always felt all kinds of weird stuff after. I kept it up. Girl, keep moving ok? Rest when you have to. If you go to Freddds list again. Go to 1st page of that blog on B12. Sally Pacholok, RN tells what protocol Drs. should take as far as injections. Check it out. Oh yea, I had gyno problems for years. Dont know if it was a B12 problems that started long ago or not. You know I didnt know you were female until last post! Assumed you were male. Dont really know why either. I also was freezing. Cant give you advise on that except to stay bundled. Your New England, I'm New York. Its 3 degrees today. Brrr Stay Warm and keep in touch. Cindyd
    cyndyd 458 Replies
    • January 16, 2009
    • 03:20 AM
    • 0
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  • Hi again, please don't give up ok? I had those same symptoms except the headaches. I did have weird pain in places I never had before I got sick tho. Shocks in back of my neck, pain that radiated from neck, up over head to eyes. Pain in upper middle back that burned. Chest soreness. Felt like ribs and muscles were bruised to touch. My neck pain was really bad. It seems like any place my body might have been having problems (joint wise) appeared, when I never knew or felt anything there before. I started injections in 2006. When I felt good enough to go back to work, I first had to get physcial therapy to build my body back up. I had lost 15-20 lbs and most of my muscles. Again I've always been fit. Worked at it always. I hated to look in the mirror. Ugh! The bones! Anyway, I still use physcial therapy and chiropractor to maintain the pain. Neck used to be my biggest complaint. It's better, not fixed. I have to stretch daily. B12 messes up joints and muscles. I walked 2x a day when I was sick, no matter how I felt. Just knew I had to keep going. Tho I always felt all kinds of weird stuff after. I kept it up. Girl, keep moving ok? Rest when you have to. If you go to Freddds list again. Go to 1st page of that blog on B12. Sally Pacholok, RN tells what protocol Drs. should take as far as injections. Check it out. Oh yea, I had gyno problems for years. Dont know if it was a B12 problems that started long ago or not. You know I didnt know you were female until last post! Assumed you were male. Dont really know why either. I also was freezing. Cant give you advise on that except to stay bundled. Your New England, I'm New York. Its 3 degrees today. Brrr Stay Warm and keep in touch. Cindyd We use a much newer concept for the b12 injection protocol using only active b12 now. The one detailed on the first page of that forum is based on inactive b12s and incorrect undertandings. Methylb12 is far more effective than hydroxyb12.
    Freddd 3,576 Replies
    • February 4, 2009
    • 00:21 AM
    • 0
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  • Sorry Freddd, I gave that advise before I read further into the thread. Again, I jumped the gun. :confused:
    cyndyd 458 Replies
    • February 4, 2009
    • 00:45 AM
    • 0
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  • I'm 30 have a healthy diet but have been very sick for the past 5 years. I am trying to find out why I am deterioating. I look horrible and don't look like myself anymore. I have been to my PCP who can't seem to get my diagnosis right and now I am on my third neurologist. He recently had me take a B12 level test. It came back at 185. I was told this is low but not alarming. Not sure how true it is. My PCP didnt even tell me what to do. The neuro suggested I get shots but the PCP said "NO just a daily B complex vitamin". I'm confonfused as to whether or not B12 can bring on these symptoms that I'm suffering from. Please help, I have no quality of life.... Here are a list of my symptoms worst to mildest. Headaches - 10Memory loss - 10Confusion - 9 ( directions, work, understanding instructions)Breathlessness - 8 (I can't get out a full sentence w/out huffing)Eye pain - 8 (behind and in my eyes, when I have a headache)Back pain - 8 (this is recent, lower back right about buttox)Recent onset of heartburn. 8 - VERY PAINFUL when I eat certain stuff. :eek:Tiredness - 7Intolerance to exercise - 7 (brings on an instant headache)Irritability 6Itchy skin - 6 Acne - 5 at age 26 broke out w/ severe cystic acne, took Accutane. Now clear but still have occasional small (non cystic) breakout. I will say the headaches are different than a migrane (Need to be clear). I do get migranes too, but these do not concern me, I handle them like a grain of salt! The pressure headaches last a long time and are SCARY. They fall in line w/ Intracranial Hypertension symptoms however I have not been diagnosed until I have a spinal tap (coming in Jan). I feel like pressure is building inside my head when I have these. Unbearable pain. I currently take Topamax 200 mg daily and a blood pressure med (just for the headaches). I'm trying to get a diagnoses. Not sure if this is intercranial Hypertension or just causes from my B12 Deficiency results. Also, how much B12 supplement should I take. My PCP had his secretary tell me just to go to GNC and grab a daily vitamin. I grabbed the GNC Big B Bcomplex. I have been taking 1 daily after I eat dinner. Haven't noticed any difference in two weeks yet. Is this right. Is 185 for a B12 level alarming???hello, i hope by now you've gone to the b12 forum, you have a very stupid doctor, 185 is extremely alarming,you will get alot worse, if you don't get an understanding of b12, and yes causes most if not all your problems, read what fredd here has posted, i hope to hear from you in b12 forum, commonly misdiagnosed.
    sickinva 87 Replies
    • February 4, 2009
    • 03:11 AM
    • 0
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  • Hi PaperTiger, How are you doing?
    cyndyd 458 Replies Flag this Response
  • I'm 30 have a healthy diet but have been very sick for the past 5 years. I am trying to find out why I am deterioating. I look horrible and don't look like myself anymore. I have been to my PCP who can't seem to get my diagnosis right and now I am on my third neurologist. He recently had me take a B12 level test. It came back at 185. I was told this is low but not alarming. Not sure how true it is. My PCP didnt even tell me what to do. The neuro suggested I get shots but the PCP said "NO just a daily B complex vitamin". I'm confonfused as to whether or not B12 can bring on these symptoms that I'm suffering from. Please help, I have no quality of life....Here are a list of my symptoms worst to mildest. Headaches - 10Memory loss - 10Confusion - 9 ( directions, work, understanding instructions)Breathlessness - 8 (I can't get out a full sentence w/out huffing)Eye pain - 8 (behind and in my eyes, when I have a headache)Back pain - 8 (this is recent, lower back right about buttox)Recent onset of heartburn. 8 - VERY PAINFUL when I eat certain stuff. :eek:Tiredness - 7Intolerance to exercise - 7 (brings on an instant headache)Irritability 6Itchy skin - 6 Acne - 5 at age 26 broke out w/ severe cystic acne, took Accutane. Now clear but still have occasional small (non cystic) breakout. I will say the headaches are different than a migrane (Need to be clear). I do get migranes too, but these do not concern me, I handle them like a grain of salt! The pressure headaches last a long time and are SCARY. They fall in line w/ Intracranial Hypertension symptoms however I have not been diagnosed until I have a spinal tap (coming in Jan). I feel like pressure is building inside my head when I have these. Unbearable pain. I currently take Topamax 200 mg daily and a blood pressure med (just for the headaches). I'm trying to get a diagnoses. Not sure if this is intercranial Hypertension or just causes from my B12 Deficiency results. Also, how much B12 supplement should I take. My PCP had his secretary tell me just to go to GNC and grab a daily vitamin. I grabbed the GNC Big B Bcomplex. I have been taking 1 daily after I eat dinner. Haven't noticed any difference in two weeks yet. Is this right. Is 185 for a B12 level alarming???Your level is too low. You need to insist on B12 shots. Mine was 176 and I had to take a shot every 2 weeks for 3 months. Also in the mean time you need to take B12 vitamins ( the dissolvable are the best and most effective. Good Luck and be persistant! If your doctor is not listening find a new one who will.
    Anonymous 42,789 Replies
    • February 3, 2011
    • 02:50 PM
    • 0
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  • I have all the same symptoms and more.. Went recently for a physical and all was good except B12 levels low. Dr. Said take supplements. Nurse said super low. I asked for an injection to help boost it up because I had already been taking supplements for 2 months. You would think I had asked for a narcotic or something, then all of the sudden they wasn't to low...:mad:.. She told me my level was 231. Can anyone help? I'm exhausted all the time. I have IBS and since taking B12 I go to the bathroom 3 to 4 times a day. My feet also hurt really bad and it's hard to walk on them in the morning. Brain fog blurred vision body aches hair loss it's crazy I could go on and on!!!
    Mrs.lbc 1 Replies Flag this Response
  • hello cindy i m also having some problems with my health from a long time about 7 years now i feel headache about 4 times a week , cant digest food proprerly,always feel tired and weak, i chaked my b12 it turned out it was 187 so should i take injects to up the level ???? thank u so much
    saghir 2 Replies Flag this Response
  • hello i feel tired all the time ,eakness, headache,can absorbe meal well,pain in back and in al the body i m feeling the bad experince since 2004 i feel like 80 year man i m 27 though
    saghir 2 Replies Flag this Response
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