Aa
B12 deficiency causing autonomic dysfunction?
Symptoms after two sessions of dental work which included the use of fentayl, nitrous oxide:
1. extreme muscle aches
2. fast heart rate at inappropriate times
3. arms and legs falling asleep at night
4. insomnia/fatique
6. pins and needles feeling in my arms
Until I had that dental work I was in excellent health. I searched and searched and cannot figure out what caused this chronic fatique snydrome. I have had every heart test possible and they have turned out ok. It appears to be some type of autonomic dysfunction. It is like my nervous system is out of whack. All typical Lab tests all come out fine. Wondering if these symptoms could be caused by Vitamin B12 deficiency after nitrous oxide use. I do have celiac sprue and may have had a subclinical Vitamin B12 deficiency. MCV, Hgb, Hct all within normal range but never had a B12 test. Before ill and even after ill was taking a Vitamin B complex supplement that included folate and B12, never took mega doses of anything. Always very careful. Could the folic acid have covered up the hematological symptoms? What are the signs of irreversible damage.
Still waiting for neurologist appt researched and decided it was probably safe to take about 1000mcg of Vitamin B12 methycolbalmin orally. All medical literature says it is non-toxic. But yet, I got very sick. Got sick after 3-4 days stopped...felt better...started re-taking got sick again. Dizzy, fast heartrate, vomiting. Could I be correct in my assumption that it is B12 and I am repleting too fast? Have you ever heard of this before? Could I get better?
1. extreme muscle aches
2. fast heart rate at inappropriate times
3. arms and legs falling asleep at night
4. insomnia/fatique
6. pins and needles feeling in my arms
Until I had that dental work I was in excellent health. I searched and searched and cannot figure out what caused this chronic fatique snydrome. I have had every heart test possible and they have turned out ok. It appears to be some type of autonomic dysfunction. It is like my nervous system is out of whack. All typical Lab tests all come out fine. Wondering if these symptoms could be caused by Vitamin B12 deficiency after nitrous oxide use. I do have celiac sprue and may have had a subclinical Vitamin B12 deficiency. MCV, Hgb, Hct all within normal range but never had a B12 test. Before ill and even after ill was taking a Vitamin B complex supplement that included folate and B12, never took mega doses of anything. Always very careful. Could the folic acid have covered up the hematological symptoms? What are the signs of irreversible damage.
Still waiting for neurologist appt researched and decided it was probably safe to take about 1000mcg of Vitamin B12 methycolbalmin orally. All medical literature says it is non-toxic. But yet, I got very sick. Got sick after 3-4 days stopped...felt better...started re-taking got sick again. Dizzy, fast heartrate, vomiting. Could I be correct in my assumption that it is B12 and I am repleting too fast? Have you ever heard of this before? Could I get better?
A related discussion, b12 was started.
I had low B12 around 172 and my doctor told me to take b12
tablet , i use to take 500 microgram on an off for 6month.
I had blood done and it came to 278 level. he then told me
to take 1000 microgram everyday and I followed his instruction
to take it every day this time, after two week I chest and
throat tightening, I use to take asprin to release the tightning and still use to continue with the 1000 microgram everyday and I had two time panic attack and alway use to feel as if the air around me is less, Is there any side effect of cynobobalamin,
and when i was taking tablet i once has one glass of alcohol.
should i take some blood test to if there is any cynide reaction.
please advise by the way i stopped taking and chest tightness
is gone now but I do have throat tightness maybe becuse of
fear of other panic attack.
tablet , i use to take 500 microgram on an off for 6month.
I had blood done and it came to 278 level. he then told me
to take 1000 microgram everyday and I followed his instruction
to take it every day this time, after two week I chest and
throat tightening, I use to take asprin to release the tightning and still use to continue with the 1000 microgram everyday and I had two time panic attack and alway use to feel as if the air around me is less, Is there any side effect of cynobobalamin,
and when i was taking tablet i once has one glass of alcohol.
should i take some blood test to if there is any cynide reaction.
please advise by the way i stopped taking and chest tightness
is gone now but I do have throat tightness maybe becuse of
fear of other panic attack.
I hope that even if you got the diagnosis of Lyme, you still had a B12 test done. I was diagnosed with MS for many years until I went to a Dr. that tested B12. My level was seriously low and I have been taking injections since. I quickly read previous posts and my Dr. told me alos that lack of B12 over a long period of time can cause MAJOR problems. So, if you have not done so, I would try and have that test done anyway. You can be taking a bunch of oral B12 but it might not be getting into your bloodstream. If you decide to do it, get a copy of your report. The Dr. I have now are constantly disagreeing on what my level should be. I want to see report myself.
Please get the B12 done - and anyone else reading this. It is such a simple thing to correct yet the long-term effects are really bad (my Dr. told me if it had been much longer, I would have been unable to walk).
Good luck!
Please get the B12 done - and anyone else reading this. It is such a simple thing to correct yet the long-term effects are really bad (my Dr. told me if it had been much longer, I would have been unable to walk).
Good luck!
Hi all,
In 2003 I was diagnosed with pernicious anemia after 3 years of symptoms listed above. The prior 2 years I went to 7 docs including one neurologist. They all missed my B12 deficiency. I was taking vitamins and the folate masked the dieficiency, so CBC would be normal. Finally, an endocrinologist did a B12 level SERUM test, called me frantically when result came back that level was at 80. My new neurologist was surprised that I even knew my name because my short term memory was so bad. I had many areas of numbness, tingling, weakness, etc.
My doc told me NEVER to have nitrous oxide for anything. I had just postponed dental surgergy a few months before. My neuro told me that at my levels of B12 I could have been left a parapalegic or even dead. He said that every doctor should be aware of folate masking pernicious anemia. I would go on and on but will stop here. Wanted to share what the good neuro said about nitrous oxide. I am getting a Med Alert bracelet that says NO NITOUR OXIDE. Wish you all well.
Good news...my neuro said that I may recover to 98% over next 2 years.
In 2003 I was diagnosed with pernicious anemia after 3 years of symptoms listed above. The prior 2 years I went to 7 docs including one neurologist. They all missed my B12 deficiency. I was taking vitamins and the folate masked the dieficiency, so CBC would be normal. Finally, an endocrinologist did a B12 level SERUM test, called me frantically when result came back that level was at 80. My new neurologist was surprised that I even knew my name because my short term memory was so bad. I had many areas of numbness, tingling, weakness, etc.
My doc told me NEVER to have nitrous oxide for anything. I had just postponed dental surgergy a few months before. My neuro told me that at my levels of B12 I could have been left a parapalegic or even dead. He said that every doctor should be aware of folate masking pernicious anemia. I would go on and on but will stop here. Wanted to share what the good neuro said about nitrous oxide. I am getting a Med Alert bracelet that says NO NITOUR OXIDE. Wish you all well.
Good news...my neuro said that I may recover to 98% over next 2 years.
Hi Jim
If your doctor hasn't already checked your vitamin b12 level, then he needs to check your serum vitamin b12level. If you are deficient is is pretty straight forward. However, this is not a straight forward condition in as far as you can be within the "normal" range, but still suffering very badly with b12 deficiency.
The normal range might be for instance 150pg/ml - 1100pg/ml. If you are told your b12 is normal, ALWAYS get a copy of your test. If you are within the normal range, but at the lower end, known as low/normal or borderline, then you should have further tests done to establish if you are actually b12 deficient. I was suffering very badly and declining whilst still within this so called normal range.
The further tests that would be helpful are methylmalonic acid and homocysteine. If you have a b12 problem then either one, or both may be elevated. There is a further test which is more recent, Holotranscobalamin, but i'm not too sure how available that is.
Hope thats helps and if you want to know any more on this topic I'd be happy to answer if I can.
Good luck
Graham
If your doctor hasn't already checked your vitamin b12 level, then he needs to check your serum vitamin b12level. If you are deficient is is pretty straight forward. However, this is not a straight forward condition in as far as you can be within the "normal" range, but still suffering very badly with b12 deficiency.
The normal range might be for instance 150pg/ml - 1100pg/ml. If you are told your b12 is normal, ALWAYS get a copy of your test. If you are within the normal range, but at the lower end, known as low/normal or borderline, then you should have further tests done to establish if you are actually b12 deficient. I was suffering very badly and declining whilst still within this so called normal range.
The further tests that would be helpful are methylmalonic acid and homocysteine. If you have a b12 problem then either one, or both may be elevated. There is a further test which is more recent, Holotranscobalamin, but i'm not too sure how available that is.
Hope thats helps and if you want to know any more on this topic I'd be happy to answer if I can.
Good luck
Graham
I've read all the comments here and feel like I need to write. I too have the same symptoms as most of you. I also have bouts of erythema nodosum, a painful nodule that develops in my legs. I've been told I have IBS too. My last MRI showed a pineal cyst my neurologist doesn't think it's related. One of my worst problems is my hamstrings. They will get very tight, to the point I can't bend over to wash my feet in the shower. They tend to loosen up over the course of the day. Now I'm having back problems due to my hamstrings. I'll be fine for 3 months, then all of the sudden, I break out with EN nodules in my legs and I feel like I have the flu. Then I start having the mental and sleep problems like all of you describe.
I'm would like to know what tests there are that check for B12 deficiencies? My neurologist checked my blood but I don't think he checked b12. I know he checked for copper since there is a lot of copper in our water supply.
Any help is appreciated.
Jim
I'm would like to know what tests there are that check for B12 deficiencies? My neurologist checked my blood but I don't think he checked b12. I know he checked for copper since there is a lot of copper in our water supply.
Any help is appreciated.
Jim
Just two administrations of nitrous oxide would probably not be enough to causs a clinically significant B12 deficiency. However Celiac sprue is associated with B12 deficiency due to lack of absorption from the small intestine.
Folic acid can cover signs of B12 deficiency, but appropriate suspicion and lab testing should be able to make the diagnosis.
B12 deficiency can affect the spinal cord and cause problems with sensory symptosm and loss of balance. It can also affect eyesight, and cognitive function if severely deficient.
Despite many causes of B12 deficiency being malabsorption from the gut, high oral dose have been found to be effective. Alternately one can bypass the GI system and get B12 intramuscular injections.
I'm not sure why you had that reaction to B12. Although I cannot give you a formal medical opinion on this site, it may be a possible allergic reaction to a constituent of the B12 formulation. Perhaps B12 injections if you are truly deficient may be the better option - check with your doctors.
Good luck
Folic acid can cover signs of B12 deficiency, but appropriate suspicion and lab testing should be able to make the diagnosis.
B12 deficiency can affect the spinal cord and cause problems with sensory symptosm and loss of balance. It can also affect eyesight, and cognitive function if severely deficient.
Despite many causes of B12 deficiency being malabsorption from the gut, high oral dose have been found to be effective. Alternately one can bypass the GI system and get B12 intramuscular injections.
I'm not sure why you had that reaction to B12. Although I cannot give you a formal medical opinion on this site, it may be a possible allergic reaction to a constituent of the B12 formulation. Perhaps B12 injections if you are truly deficient may be the better option - check with your doctors.
Good luck
WOW!! I can't believe the multitude of symptoms you are all reporting as caused by a potential (in some cases) B12 deficiency!
About 2 years ago my doc ran a B12 serum test on me as part of my yearly physical. My test results came back with a serum B12 level of 112 which is deficient. I wasn't suffering ANY symptoms at all! He gave me a few injections and I took an oral supplementation of B12 for a few months and it came up to the normal range. I continued taking a much smaller dose of oral B12 for several months before I stopped taking the oral B12 completely.
Well...he checked it again in March and again my serum B12 was deficient (this time 100) but this time we tried skipping the injections and going straight to a high oral dose of B12. After taking 1200mcg for approximately 6 weeks and retesting...my serum B12 had gone from only 100 too over 900! Again...I had no symptoms although my serum B12 was so low. That is why I find the information you are posting so startling!
I also suffered chronic anemia, which required me to take daily iron supplements for a long time. However, my chronic anemia has resolved after having a hysterectomy 1 yr ago and is now only 1 point from being too HIGH!
I see my doc again next week for follow-up on my recent B12 bloodwork results and will get instruction on how to prevent my B12 from becoming deficient again. As far as the treatment for B12 deficiency goes...my doc told me that "if" my B12 levels came up by taking oral supplements, he can rule out pernicious anemia because they will not work if you have this condition due to your body having NO intrinsic factor, which is required for B12 absorption. He also said that if the B12 supplementation worked...it would most likely indicate a malabsorption problem where my body does have "some" intrinsic factor but it is not able to efficiently absorb B12 for some reason.
So I guess for me this means that I can use oral B12 supplements for treatment of my condition rather than having to get injections BUT I will have to continue taking them for life in order to prevent future B12 deficiency.
What really surprises me is the number of people with complex problems related to B12 deficiency. Before reading this thread I didn't think it was a big deal because my doc didn't make a big deal of it.
Good luck everyone. I hope you get to the root cause of your problems.
About 2 years ago my doc ran a B12 serum test on me as part of my yearly physical. My test results came back with a serum B12 level of 112 which is deficient. I wasn't suffering ANY symptoms at all! He gave me a few injections and I took an oral supplementation of B12 for a few months and it came up to the normal range. I continued taking a much smaller dose of oral B12 for several months before I stopped taking the oral B12 completely.
Well...he checked it again in March and again my serum B12 was deficient (this time 100) but this time we tried skipping the injections and going straight to a high oral dose of B12. After taking 1200mcg for approximately 6 weeks and retesting...my serum B12 had gone from only 100 too over 900! Again...I had no symptoms although my serum B12 was so low. That is why I find the information you are posting so startling!
I also suffered chronic anemia, which required me to take daily iron supplements for a long time. However, my chronic anemia has resolved after having a hysterectomy 1 yr ago and is now only 1 point from being too HIGH!
I see my doc again next week for follow-up on my recent B12 bloodwork results and will get instruction on how to prevent my B12 from becoming deficient again. As far as the treatment for B12 deficiency goes...my doc told me that "if" my B12 levels came up by taking oral supplements, he can rule out pernicious anemia because they will not work if you have this condition due to your body having NO intrinsic factor, which is required for B12 absorption. He also said that if the B12 supplementation worked...it would most likely indicate a malabsorption problem where my body does have "some" intrinsic factor but it is not able to efficiently absorb B12 for some reason.
So I guess for me this means that I can use oral B12 supplements for treatment of my condition rather than having to get injections BUT I will have to continue taking them for life in order to prevent future B12 deficiency.
What really surprises me is the number of people with complex problems related to B12 deficiency. Before reading this thread I didn't think it was a big deal because my doc didn't make a big deal of it.
Good luck everyone. I hope you get to the root cause of your problems.
Why are you choosing a dose of 1000 ug B12 to take orally DAILY? That is a massive amount- Deficiencies are treated with only a few micrograms daily/weekly just fine. And more importantly you have not confirmed yours!
OTC meds and vitamins and even herbals are all drugs- and all dangerous in their own right. The misuse of them can be deadly or to a lesser evil could mask a diagnosis you seem to so desperately want.
Nitrous oxide can create a syndrome "like" B12 deficiency- not the same thing. It wont CAUSE B12 deficiency or alter anything in that manner- what you really need to do is find a physician you can trust and talk to them. DO NOT go to them saying you know what you have- I work with all M.D.'s and that's the quickest way to get tuned out. And please, surf the internet with caution. There is alot of information available, but even info published in medical journals (which you likely dont have access to) is often incorrect. Medicine is a science, a practice. Doctors dont know everything and shouldnt be expected to! The sign of a good Doctor is one who will work with you, but if you appear to be closed minded and diagnose yourself, trust me you will hit a brick wall every time. We cant order the MRI's and write the Rx's ourselves- we ask them to lay their license's on the line with decisions every day- cause lets face it, the majority of this society just wants to blame somebody when things dont work out.
Just be patient and be careful!!!!! If you cant work with your Dr- get a different one, and if you have insurance also beware, they impose more restrictions on what the dr can and cannot test for than you may be aware of
OTC meds and vitamins and even herbals are all drugs- and all dangerous in their own right. The misuse of them can be deadly or to a lesser evil could mask a diagnosis you seem to so desperately want.
Nitrous oxide can create a syndrome "like" B12 deficiency- not the same thing. It wont CAUSE B12 deficiency or alter anything in that manner- what you really need to do is find a physician you can trust and talk to them. DO NOT go to them saying you know what you have- I work with all M.D.'s and that's the quickest way to get tuned out. And please, surf the internet with caution. There is alot of information available, but even info published in medical journals (which you likely dont have access to) is often incorrect. Medicine is a science, a practice. Doctors dont know everything and shouldnt be expected to! The sign of a good Doctor is one who will work with you, but if you appear to be closed minded and diagnose yourself, trust me you will hit a brick wall every time. We cant order the MRI's and write the Rx's ourselves- we ask them to lay their license's on the line with decisions every day- cause lets face it, the majority of this society just wants to blame somebody when things dont work out.
Just be patient and be careful!!!!! If you cant work with your Dr- get a different one, and if you have insurance also beware, they impose more restrictions on what the dr can and cannot test for than you may be aware of
I know you mentioned having dental work done. Do you have any mercury fillings in your teeth? A friend of ours suffered similar symptoms. He had mercury fillings and had them removed. He is fine now. You may want to research the effects of cavity fillings...and be sure any recent dental work did not involve any mercury. Good luck.
Hi,
Thanks for the encouraging words. My internist (family physican)
& all my other physicans have written letters stating I am unable to work so hopefully this disability company will get the general idea that they are telling the truth. They cut me off about 5 days before my decompression surgery for graves eye disease in March. They (LTD) ruled that surgery elective & didn't even contact my eye doctor or surgeron to find out their opinion. It was far from elective . They did the surgery to prevent optic nerve damage. Yes, I do live in the U.S.. I have been receiving long term disability from this company for about 1 year & as my doctor said they just cut you off to test you & feel if they give you a hard time & keep you poor enough that you will go back to work whether your able or not. Well, I hired a lawyer yesterday to write my appeal & let them know I'm serious. There is no way I can work as a nurse right now not physically or mentally. It was as you say a pencil pusher that took the notations in my charts out of context & put her own interpation to it & decided I was able to work at my occupation. Like she commented at my January visit with my family doctor that I stated that my enery level had improved some but she didn't complete his notation that I still fatigue easily & my endurance is very poor yet.
I just think it's terrible that I am forced to hire a lawyer to get back what should have never been taken away to begin with.
I hope this appeal goes through right away because I'm in danger of losing my health insurance otherwise. I pay close to $350.00 a month for it & that's hard to come by with nothing coming in. Let alone my other bills. I should sue them for mental distress. Which affects my health even more. Insurance companies have too much cloute here & get away with alot of things that they shouldn't.....that's for sure.
I've got a question to ask you...Do all neurologist brush things under the rug & act like your physical problems are all in your head? Absolutely, no offense to the neurologist on this forum because he is the exception. But I'm almost afraid to make an appointment with another one because I hate being treated that way. I neither like being sick or having my whole life altered by these diseases controling me. I hate being treated like some head case by a doctor I'm paying to to help me restore my health. It's like they label you even before they complete their examination. I'm very fortunate that most of my physicans aren't like that. But I've run into a couple who are.
Well, I'm voicing my frustration here & I apologize for using your shoulder.
Thanks so much for listening, TJ
Thanks for the encouraging words. My internist (family physican)
& all my other physicans have written letters stating I am unable to work so hopefully this disability company will get the general idea that they are telling the truth. They cut me off about 5 days before my decompression surgery for graves eye disease in March. They (LTD) ruled that surgery elective & didn't even contact my eye doctor or surgeron to find out their opinion. It was far from elective . They did the surgery to prevent optic nerve damage. Yes, I do live in the U.S.. I have been receiving long term disability from this company for about 1 year & as my doctor said they just cut you off to test you & feel if they give you a hard time & keep you poor enough that you will go back to work whether your able or not. Well, I hired a lawyer yesterday to write my appeal & let them know I'm serious. There is no way I can work as a nurse right now not physically or mentally. It was as you say a pencil pusher that took the notations in my charts out of context & put her own interpation to it & decided I was able to work at my occupation. Like she commented at my January visit with my family doctor that I stated that my enery level had improved some but she didn't complete his notation that I still fatigue easily & my endurance is very poor yet.
I just think it's terrible that I am forced to hire a lawyer to get back what should have never been taken away to begin with.
I hope this appeal goes through right away because I'm in danger of losing my health insurance otherwise. I pay close to $350.00 a month for it & that's hard to come by with nothing coming in. Let alone my other bills. I should sue them for mental distress. Which affects my health even more. Insurance companies have too much cloute here & get away with alot of things that they shouldn't.....that's for sure.
I've got a question to ask you...Do all neurologist brush things under the rug & act like your physical problems are all in your head? Absolutely, no offense to the neurologist on this forum because he is the exception. But I'm almost afraid to make an appointment with another one because I hate being treated that way. I neither like being sick or having my whole life altered by these diseases controling me. I hate being treated like some head case by a doctor I'm paying to to help me restore my health. It's like they label you even before they complete their examination. I'm very fortunate that most of my physicans aren't like that. But I've run into a couple who are.
Well, I'm voicing my frustration here & I apologize for using your shoulder.
Thanks so much for listening, TJ
Hi again
I really do understand how you feel, and the frustration and anxiety that is caused by always waiting for someone to eventually do something.
The good thing is that you have what you want ahead of you. You are seeing a new doctor, who may just look at this from a different angle and be helpful. You are also seeing a specialist, and from what you say he sounds to have a good reputation. Although you have to wait a few weeks to see the specialist, that's probably as quick as you can get, short of getting carried feet first into casualty.
You are right, it's difficult knowing how to appraoch your new doctor. All I would say is that I think you should let him know exactly how you feel, letting him know all your symptoms and how they have progressed over the period of time. The problem is that it's sometimes hard to sit down and do that without taking over the whole consultation. I found that explaining how things had progressed and how I was feeling seemed to take me so long that most of the consultation was gone by the time I was looking for his input.
Even after all thet, it is so easy to come out and think, "my god I forgot to mention......whatever". To take the pressure off yourself I would sit down and write down everything you feel you want him to know and hand it to him. By doing this you make sure he gets what you want to give him without trying to cram it all in during the appointment, and maybe to his eyes appearing like an over anxious patient.
Wait and see what he intends to do and what tests he thinks should be done. He might just mention exactly what you want. That way it's his idea and you get what you want.
If it looks like he is not going to follow it up, then you could mention that "a friend" or "a family member" or whoever you want, had similar symptoms to your own and that tests, such as b12, homcysteine and MMA eventually showed what the problem was. It's not really a lie, as myself, nurselpn and many others who have been through this really want to help if we can. As I mentioned before, I can't say that your problems, or at least part of them, are because of b12 deficiency, but I definitely can say that it can cause so many of your symptoms and certainly could be a major factor.
You asked about oral supplementation V shots. It seems to depend on what part of the world you are in as to how they view this. I know from what I have read that it is common in Sweden and Japan to treat pernicious anaemia, or b12 deficiency caused by other problems, with high doses of vitamin b12, methylcobalamin being cited as the preferred form of b12. I also think that many people in the states think that oral doses are just as effective.
To my knowledge,in the UK it is simply injections that doctors treat b12 deficiency with. But I think we are miles behind here in knowledge. When I mentioned methylcobalamin to my GP, he looked at me as if I had just grown another head!!!! Not only had he not heard of it, he had never even heard of homocysteine or methylmalonic acid. I ask you, what chance do we have?
The doses which I have seen mentioned as for oral treatment, are daily doses of between 2000 and 5000 mcg of sublingual b12. I have never heard of anyone overdosing on b12. My understanding is that as it is a water bound vitamin, as opposed to fat bound, whatever the body doesn't need it excretes in the normal way. If you have a malabsorption problem, you won't get anywhere near the ammount of the tablet, which is why you are taking much more than the body needs.
Even if it's hard, try to give yourself some mental time off. You know that you are going to see these doctors, and that there is not a lot you can do before that. If you look at it that way, it might just take a little of the heat off. Just take your time and prepare whatever you want to take with you.
I really hope that it all goes well. I'll keep checking to see what the update is.
Best of luck
Graham.
I really do understand how you feel, and the frustration and anxiety that is caused by always waiting for someone to eventually do something.
The good thing is that you have what you want ahead of you. You are seeing a new doctor, who may just look at this from a different angle and be helpful. You are also seeing a specialist, and from what you say he sounds to have a good reputation. Although you have to wait a few weeks to see the specialist, that's probably as quick as you can get, short of getting carried feet first into casualty.
You are right, it's difficult knowing how to appraoch your new doctor. All I would say is that I think you should let him know exactly how you feel, letting him know all your symptoms and how they have progressed over the period of time. The problem is that it's sometimes hard to sit down and do that without taking over the whole consultation. I found that explaining how things had progressed and how I was feeling seemed to take me so long that most of the consultation was gone by the time I was looking for his input.
Even after all thet, it is so easy to come out and think, "my god I forgot to mention......whatever". To take the pressure off yourself I would sit down and write down everything you feel you want him to know and hand it to him. By doing this you make sure he gets what you want to give him without trying to cram it all in during the appointment, and maybe to his eyes appearing like an over anxious patient.
Wait and see what he intends to do and what tests he thinks should be done. He might just mention exactly what you want. That way it's his idea and you get what you want.
If it looks like he is not going to follow it up, then you could mention that "a friend" or "a family member" or whoever you want, had similar symptoms to your own and that tests, such as b12, homcysteine and MMA eventually showed what the problem was. It's not really a lie, as myself, nurselpn and many others who have been through this really want to help if we can. As I mentioned before, I can't say that your problems, or at least part of them, are because of b12 deficiency, but I definitely can say that it can cause so many of your symptoms and certainly could be a major factor.
You asked about oral supplementation V shots. It seems to depend on what part of the world you are in as to how they view this. I know from what I have read that it is common in Sweden and Japan to treat pernicious anaemia, or b12 deficiency caused by other problems, with high doses of vitamin b12, methylcobalamin being cited as the preferred form of b12. I also think that many people in the states think that oral doses are just as effective.
To my knowledge,in the UK it is simply injections that doctors treat b12 deficiency with. But I think we are miles behind here in knowledge. When I mentioned methylcobalamin to my GP, he looked at me as if I had just grown another head!!!! Not only had he not heard of it, he had never even heard of homocysteine or methylmalonic acid. I ask you, what chance do we have?
The doses which I have seen mentioned as for oral treatment, are daily doses of between 2000 and 5000 mcg of sublingual b12. I have never heard of anyone overdosing on b12. My understanding is that as it is a water bound vitamin, as opposed to fat bound, whatever the body doesn't need it excretes in the normal way. If you have a malabsorption problem, you won't get anywhere near the ammount of the tablet, which is why you are taking much more than the body needs.
Even if it's hard, try to give yourself some mental time off. You know that you are going to see these doctors, and that there is not a lot you can do before that. If you look at it that way, it might just take a little of the heat off. Just take your time and prepare whatever you want to take with you.
I really hope that it all goes well. I'll keep checking to see what the update is.
Best of luck
Graham.
Hi again, sorry for the delay in answering, I have been away for a couple of days.
Nursepln,
You really are having a hard time of it just now and those idiots at the LTD are certainly not helping you cope ant better. I'm in the UK and I'm guessing that the LTD is the body in the US that deals with disability clains. Who is saying you are capable of work? Do they have their own doctors assessing you, or is it some pen pusher that that thinks they have a medical degree?
If your physicians state that you are unfit for work, and are prepared to state that to them, then I can't see how they can ignore it. If you did go back to work and your condition contributes to an accident or further ill health to yourself, they would be inviting a law suit.
I had to retire after 28 years in the police force, mainly as a detective. It's a bit ironic that I had to investigate my own health!!!!
I have been assessed as being unfit to work since 2002 and receive incapacity denefit. On my last assessment at that department (normally about every 18mths) the doctor who was to examine me simply said that she had received a letter from my GP that day, and she wouldn't need to examine or even question me. I think you need to ask your doc to become involved here.
You asked how did they go about identifying I had been deficient over past few years. I was sent to a third neurologist, who simply decided that seeing two previous neurologists was sufficient for him to dismiss any neuro problem, including B12 deficiency. I tried to explain that my levels were on the low side and had kept droping, but he wouldn't even recheck it.
Two days later I arranged (through the net) to have blood posted to a lab in London, and by this time I was actually deficient. I handed the results into my GP who later arranged for me to see a haematologist. He looked at my file (which was like war and peace) and saw that all my previous b12 results were either low normal, or borderline prior to deficiency. He agreed that my levels, which three neurologists had dismissed, could be responsible for my neurological symptoms and damage. I am now seeing a fourth neurologist for assessment.
You asked about tests. The only MRI that the first three neurologists did was of brain, which was normal. Nerve conduction tests showed deficiencies in my right leg, which was then ignored. My first neuro exan in 98 was completely normal. When I was sent back to same neurologist in 2000, she now found that I had reduced ankle reflexes. Again, completely ignored!!!!!!!
I don't know a great deal about Graves Disease other than it is an autoimmune disorder conected to the thyroid. What I do know is that autoimmune diseases can often run together and that includes conditions like pernicious anaemia. Whatever the effects of your Graves Disease, your b12 level was rediculously low and may be responsible for more of your symptoms than your doctors think.
Your list of symptoms is just so like mine, even down to the diverticulitis, that you could have been speaking about me.
You are absolutely right, your b12 supplementation would have had the effect of lowering your homocysteine and MMA back to normal. I bet if they had tested it before your b12 injections that either one or both would have been high.
It's good that you are taking your b12 so regular, I've heard that improvement can happen even after long lapses. I'll mention more on this in reply to hikerunner below.
I hope you get your doc to step in and take issue with the LTD, you don't need any more stress when dealing with all you have.
Take care of yourself
To Hikerunner
Hi again, I'm glad that you found talking with like minded poor souls, and fellow sufferers, a little help. At least we can relate to all we have been through.
It's definately not your fault that you didn't catch this earlier, your not the one with the the MD after your name.
I think you may well be right in that the nitrous oxide exposure aggrevated an already existing b12 deficiency. It will be interesting to see what the neurologist on Medhelp makes of it.
Again you are right that your doc should have tested. Not having anaemia is not a reason to dismiss b12 deficeincy. If only more were aware of this.
You asked about my condition and I can say that the palpitations which I had, seemed to calm down after treatment. I wasn't sure if I felt much better right at the start of treatment, but I had been ill for so long. What I was aware of pretty quickly, was that although still tired, I didn't fall asleep as often. Gradually I have found improvement in my stamina and energy levels, although I still have constant burning and tingling in my legs/feet and less so in my arms. My muscles are still tight and uncomfortable, but perhaps a little less so.
Although I have read that damage after a while is not repairable, there is also some suggestion that the body does still have improvement after years of deficiency. I know Rose on Braintalk talks about small changes still going on after years, and so do others. As to what extent I'll improve, I dont know but I live in hope.
The good thing in your case is that it may be identified a lot sooner than mine, and hopefuly you could make a full recovery. Don't give up hope on that. I think the psychological side of all chronic illnesses takes it's toll and it really does help to try and stay positive.
I hope you get things sorted out soon. It would be good to hear how you get on.
Good luck
Graham
Nursepln,
You really are having a hard time of it just now and those idiots at the LTD are certainly not helping you cope ant better. I'm in the UK and I'm guessing that the LTD is the body in the US that deals with disability clains. Who is saying you are capable of work? Do they have their own doctors assessing you, or is it some pen pusher that that thinks they have a medical degree?
If your physicians state that you are unfit for work, and are prepared to state that to them, then I can't see how they can ignore it. If you did go back to work and your condition contributes to an accident or further ill health to yourself, they would be inviting a law suit.
I had to retire after 28 years in the police force, mainly as a detective. It's a bit ironic that I had to investigate my own health!!!!
I have been assessed as being unfit to work since 2002 and receive incapacity denefit. On my last assessment at that department (normally about every 18mths) the doctor who was to examine me simply said that she had received a letter from my GP that day, and she wouldn't need to examine or even question me. I think you need to ask your doc to become involved here.
You asked how did they go about identifying I had been deficient over past few years. I was sent to a third neurologist, who simply decided that seeing two previous neurologists was sufficient for him to dismiss any neuro problem, including B12 deficiency. I tried to explain that my levels were on the low side and had kept droping, but he wouldn't even recheck it.
Two days later I arranged (through the net) to have blood posted to a lab in London, and by this time I was actually deficient. I handed the results into my GP who later arranged for me to see a haematologist. He looked at my file (which was like war and peace) and saw that all my previous b12 results were either low normal, or borderline prior to deficiency. He agreed that my levels, which three neurologists had dismissed, could be responsible for my neurological symptoms and damage. I am now seeing a fourth neurologist for assessment.
You asked about tests. The only MRI that the first three neurologists did was of brain, which was normal. Nerve conduction tests showed deficiencies in my right leg, which was then ignored. My first neuro exan in 98 was completely normal. When I was sent back to same neurologist in 2000, she now found that I had reduced ankle reflexes. Again, completely ignored!!!!!!!
I don't know a great deal about Graves Disease other than it is an autoimmune disorder conected to the thyroid. What I do know is that autoimmune diseases can often run together and that includes conditions like pernicious anaemia. Whatever the effects of your Graves Disease, your b12 level was rediculously low and may be responsible for more of your symptoms than your doctors think.
Your list of symptoms is just so like mine, even down to the diverticulitis, that you could have been speaking about me.
You are absolutely right, your b12 supplementation would have had the effect of lowering your homocysteine and MMA back to normal. I bet if they had tested it before your b12 injections that either one or both would have been high.
It's good that you are taking your b12 so regular, I've heard that improvement can happen even after long lapses. I'll mention more on this in reply to hikerunner below.
I hope you get your doc to step in and take issue with the LTD, you don't need any more stress when dealing with all you have.
Take care of yourself
To Hikerunner
Hi again, I'm glad that you found talking with like minded poor souls, and fellow sufferers, a little help. At least we can relate to all we have been through.
It's definately not your fault that you didn't catch this earlier, your not the one with the the MD after your name.
I think you may well be right in that the nitrous oxide exposure aggrevated an already existing b12 deficiency. It will be interesting to see what the neurologist on Medhelp makes of it.
Again you are right that your doc should have tested. Not having anaemia is not a reason to dismiss b12 deficeincy. If only more were aware of this.
You asked about my condition and I can say that the palpitations which I had, seemed to calm down after treatment. I wasn't sure if I felt much better right at the start of treatment, but I had been ill for so long. What I was aware of pretty quickly, was that although still tired, I didn't fall asleep as often. Gradually I have found improvement in my stamina and energy levels, although I still have constant burning and tingling in my legs/feet and less so in my arms. My muscles are still tight and uncomfortable, but perhaps a little less so.
Although I have read that damage after a while is not repairable, there is also some suggestion that the body does still have improvement after years of deficiency. I know Rose on Braintalk talks about small changes still going on after years, and so do others. As to what extent I'll improve, I dont know but I live in hope.
The good thing in your case is that it may be identified a lot sooner than mine, and hopefuly you could make a full recovery. Don't give up hope on that. I think the psychological side of all chronic illnesses takes it's toll and it really does help to try and stay positive.
I hope you get things sorted out soon. It would be good to hear how you get on.
Good luck
Graham
I also have diverticulitis (I've had that for at least 10 years, I had a large bowel resection in 1998). Also some kind of a malabsorption problem which just showed up on the parietal cell antibodies (grossly elevated), but the intrinsic factor blocking antibodies were negative.
My CBC & MCV have never been abnormal either.
My CBC & MCV have never been abnormal either.
Hi there
Firstly I should perhaps explain that I am diagnosed as having a vitamin b12 deficiency, and will receive injections of b12 for life. I also suffered from the same symptoms you mention although my neurological symptoms (tingling/burning) were present in both my arms and lower legs. Intermitantly at first, but without identifying and treating the problem, these became persistant.
I suspected my symptoms were due to b12 deficiency long before my GP, three neurologists and a gastroenterologist did. Eventually when I saw a haematologist, after I became clinically deficient, he confirmed that my levels over the past few years ( about 10 samples) were all in the low/normal and borderline areas.
You don't actually have to be deficient to have the problems caused by b12 deficiency. Some people, myself being one, can end up with serious neurological problms in the low/normal or borderline areas. That is why it is so important to have further tests carried out, such as methylmalonic acid and homocysteine, which can show true b12 deficiency when a serum b12 level is low but not actually deficient. (my homocysteine was well outwith the normal range)
As for your doctor's statment about not needing to check your b12 because you are not anaemic, I could laugh if it weren't so damn serious. The paragragh directly below this one,(*****) I have copied and pasted from a reply I gave to another post further down the forum. It was entitled "I can't seem to remember things and sometimes forget where I am" which was posted on 31/03/06.
*****What I can say for certain, is that it is not as straight forward as looking at a serum b12 level and deciding everything is alright. Incidently, if you bring this up with your doctor and he says that if you had a b12 problem, then you would also be anaemic, he is plain wrong. You MAY develop anaemia, but you don't have to. I didn't and again this misguided view delayed my diagnosis before I ended up with neurological damage.*****
If you wish to read that particular post, and my replies, you will see what I had to go through to get this identified.
I cannot say that your problems are caused by vitamin b12 deficiency, but I can certainly say that they could be. It is a pity that they didn't check your serum b12 before you started taking methylcobalamin, but as you have not taken it for too long, it might not have increased your level by so much that deficiency could still be identified.
One other thing I have heard is that strange things can happen when the body gets b12, when it has been deficient. Apparantly this can be because the body is trying to repair itself. That might explain your strange symptoms when taking b12 I suppose, but I don't know.
One of the posters above, nurselpn, gave you a link to the Braintalk forum http://brain.hastypastry.net/forums/showthread.php?t=57840
The information there was posted by Rose, whom I have spoken to on many occassions, and has a knowledge of b12 deficiency which I assure you is more than most doctors, and miles ahead of your own doctor. You might want to become a member there, doesn't cost anything, and post your question on the Peripheral Neuropathy forum. I'm certain that Rose, and others will be more than willing to comment. If you wish me to clarify anything I have mentioned, or you want to ask anything I will be happy to reply.
Good luck
Graham
Firstly I should perhaps explain that I am diagnosed as having a vitamin b12 deficiency, and will receive injections of b12 for life. I also suffered from the same symptoms you mention although my neurological symptoms (tingling/burning) were present in both my arms and lower legs. Intermitantly at first, but without identifying and treating the problem, these became persistant.
I suspected my symptoms were due to b12 deficiency long before my GP, three neurologists and a gastroenterologist did. Eventually when I saw a haematologist, after I became clinically deficient, he confirmed that my levels over the past few years ( about 10 samples) were all in the low/normal and borderline areas.
You don't actually have to be deficient to have the problems caused by b12 deficiency. Some people, myself being one, can end up with serious neurological problms in the low/normal or borderline areas. That is why it is so important to have further tests carried out, such as methylmalonic acid and homocysteine, which can show true b12 deficiency when a serum b12 level is low but not actually deficient. (my homocysteine was well outwith the normal range)
As for your doctor's statment about not needing to check your b12 because you are not anaemic, I could laugh if it weren't so damn serious. The paragragh directly below this one,(*****) I have copied and pasted from a reply I gave to another post further down the forum. It was entitled "I can't seem to remember things and sometimes forget where I am" which was posted on 31/03/06.
*****What I can say for certain, is that it is not as straight forward as looking at a serum b12 level and deciding everything is alright. Incidently, if you bring this up with your doctor and he says that if you had a b12 problem, then you would also be anaemic, he is plain wrong. You MAY develop anaemia, but you don't have to. I didn't and again this misguided view delayed my diagnosis before I ended up with neurological damage.*****
If you wish to read that particular post, and my replies, you will see what I had to go through to get this identified.
I cannot say that your problems are caused by vitamin b12 deficiency, but I can certainly say that they could be. It is a pity that they didn't check your serum b12 before you started taking methylcobalamin, but as you have not taken it for too long, it might not have increased your level by so much that deficiency could still be identified.
One other thing I have heard is that strange things can happen when the body gets b12, when it has been deficient. Apparantly this can be because the body is trying to repair itself. That might explain your strange symptoms when taking b12 I suppose, but I don't know.
One of the posters above, nurselpn, gave you a link to the Braintalk forum http://brain.hastypastry.net/forums/showthread.php?t=57840
The information there was posted by Rose, whom I have spoken to on many occassions, and has a knowledge of b12 deficiency which I assure you is more than most doctors, and miles ahead of your own doctor. You might want to become a member there, doesn't cost anything, and post your question on the Peripheral Neuropathy forum. I'm certain that Rose, and others will be more than willing to comment. If you wish me to clarify anything I have mentioned, or you want to ask anything I will be happy to reply.
Good luck
Graham
graham,
Quote: " I suspected my symptoms were due to b12 deficiency long before my GP, three neurologists and a gastroenterologist did. Eventually when I saw a haematologist, after I became clinically deficient, he confirmed that my levels over the past few years ( about 10 samples) were all in the low/normal and borderline areas. "
I read the enclosed post which you just wrote to hikerunner, How did they go about finding that you had been deficient for the past few years. I mean what tests did they do? Was your EMG 's & MRI normal?
I also have Grave's thyroid disease which I was being treated for when my B-12 level of 89 was found. I had been experiencing numbness of hands & feet for quite awhile but had started experiencing facial numbness too & that is what sent me to a neurologist where I was found to be B-12 def.. I have no idea how long I had been deficient but I also was having many more symptoms such as intermittent sore tongue, mood disorders, forgetfullness (I would also get lost), diff. concentrating, major depression, severe fatigue, insomnia, inability to even think or speak sometimes, I could think of the word I wanted at times but could not say it, sometimes I still can't even think of the word I want, my short term memory is poor, too. I also had bilateral carpal tunnel surgery in Oct. of 2004 with no improvement to my numbness.
Many of these symptoms can also be from graves thyroid disease. So I have no idea how long my B-12 was low. My levels are better now for both conditions, B-12 648 & thyroid tests within normal limits... But my symptoms remain, some a little better at times but some the same especially the numbness & tingling in my extremities. I have been off work since that carpal tunnel surgery in Oct. 04 still being treated for the graves now affecting my eyes (graves eye disease) & for my B-12. I'm taking 1cc of injectable B-12 weekly. My long term disability stopped payments last month saying now that my levels are now normal I am able to work. They said I have no proof of any further problems related to my condition. That's why I need to know how long this has been low & what I can do to prove it & my PN to my LTD. I'm asking you this because I know you posted to the CCNeurologist on this forum in regards to this very subject. I did get the additional tests for B-12 def. (homocystine & MMA) & of course they are all normal now seeing I have been on supplementation since last June. So I'm back at square one again. All my physicans say I can't work & the LTD says I can & will not take their opinion into consideration without further proof. They don't seem to realize that if not caught early both of y conditions can cause long term effects. I've tried posting questions on this forum several times but can't seem to manage one at the right time. If you have any ideas I would really appreciate it.
----------------------------------------------------------------
Hikerunner,
Have you considered finding a new physican or asking for a referral to someone else? Low B-12 can cause permanent damage if not treated early. One web site I researched said "within months". Don't fool with someone who won't listen to you....Your health is more important. Have you had your thyroid checked? The palpatations you mentioned made me think you may have a thyroid problem also. Thyroid disease makes you suspeptable to B-12 deficiency. Many of your symptoms could be caused by either or. An endocrinologist could research both of these diseases for you. You need to have your TSH, free t-3 & free t-4 checked along with thyroid antibodies for auto-immune thyroid disease.
Go to Suite 101 by Elaine Moore if you want to learn more about thyroid auto-immune disease. Just paste it into your search engine. Good Luck & God Bless, TJ
Quote: " I suspected my symptoms were due to b12 deficiency long before my GP, three neurologists and a gastroenterologist did. Eventually when I saw a haematologist, after I became clinically deficient, he confirmed that my levels over the past few years ( about 10 samples) were all in the low/normal and borderline areas. "
I read the enclosed post which you just wrote to hikerunner, How did they go about finding that you had been deficient for the past few years. I mean what tests did they do? Was your EMG 's & MRI normal?
I also have Grave's thyroid disease which I was being treated for when my B-12 level of 89 was found. I had been experiencing numbness of hands & feet for quite awhile but had started experiencing facial numbness too & that is what sent me to a neurologist where I was found to be B-12 def.. I have no idea how long I had been deficient but I also was having many more symptoms such as intermittent sore tongue, mood disorders, forgetfullness (I would also get lost), diff. concentrating, major depression, severe fatigue, insomnia, inability to even think or speak sometimes, I could think of the word I wanted at times but could not say it, sometimes I still can't even think of the word I want, my short term memory is poor, too. I also had bilateral carpal tunnel surgery in Oct. of 2004 with no improvement to my numbness.
Many of these symptoms can also be from graves thyroid disease. So I have no idea how long my B-12 was low. My levels are better now for both conditions, B-12 648 & thyroid tests within normal limits... But my symptoms remain, some a little better at times but some the same especially the numbness & tingling in my extremities. I have been off work since that carpal tunnel surgery in Oct. 04 still being treated for the graves now affecting my eyes (graves eye disease) & for my B-12. I'm taking 1cc of injectable B-12 weekly. My long term disability stopped payments last month saying now that my levels are now normal I am able to work. They said I have no proof of any further problems related to my condition. That's why I need to know how long this has been low & what I can do to prove it & my PN to my LTD. I'm asking you this because I know you posted to the CCNeurologist on this forum in regards to this very subject. I did get the additional tests for B-12 def. (homocystine & MMA) & of course they are all normal now seeing I have been on supplementation since last June. So I'm back at square one again. All my physicans say I can't work & the LTD says I can & will not take their opinion into consideration without further proof. They don't seem to realize that if not caught early both of y conditions can cause long term effects. I've tried posting questions on this forum several times but can't seem to manage one at the right time. If you have any ideas I would really appreciate it.
----------------------------------------------------------------
Hikerunner,
Have you considered finding a new physican or asking for a referral to someone else? Low B-12 can cause permanent damage if not treated early. One web site I researched said "within months". Don't fool with someone who won't listen to you....Your health is more important. Have you had your thyroid checked? The palpatations you mentioned made me think you may have a thyroid problem also. Thyroid disease makes you suspeptable to B-12 deficiency. Many of your symptoms could be caused by either or. An endocrinologist could research both of these diseases for you. You need to have your TSH, free t-3 & free t-4 checked along with thyroid antibodies for auto-immune thyroid disease.
Go to Suite 101 by Elaine Moore if you want to learn more about thyroid auto-immune disease. Just paste it into your search engine. Good Luck & God Bless, TJ
Hi again
I am now 50 years old. It was back in 1998 that I weny to my doctor complaining of occassional mild tingling in my lower legs and feet, and very slightly in my arms. I had also just not been feeling up to the mark, tired and occassionaly slightly light headed, almost just a slightly off balance feeling.
My doctor did usual blood tests, ie blood count, thyroid, liver function etc, but no b12 test as I wasn't anaemic. I had what would be considered a stressful job, and he put it down to perhaps overwork.
My symptoms over the next year, really stepped up untill I was fatigued all the time. My muscles were sore and tender and tired very easily, even the soles of my feet were sore. I also felt very foggy headed and my memory was badly effected. Other symptoms too, including heart palpitations.
It took me far too long to get treatment, I started injections over two years now, which means I went untreated for about five years. I noticed pretty much straight away after the injections began that I wasn't falling asleep as much, but I still didn't feel well. Gradually I have gotten better in general, but my sore muscles, tingling and tightness remain.
I have gone through patches after treatment started when I didn't feel well at all, but it's hard to say if this whole sad affair was just taking it's toll on me, or whether the treatment was making me have ups and downs.
It could also be my stomach/bowel inflamation problem which is partly responsible for me not feeling good. You have to remember that if you have a b12 deficiency problem, then you have to have a reason for it. Unless you have a diet devoid of b12, or very low, such as a vegetarian or vegan, then you have a problem causing you to be low.
I have an inflamation problem and diverticulitis, which they only discovered when they eventually looked. The area of the small bowel, at the Ilium, was damaged and that is the area of the bowel which absorbs b12 into the body. Other problems such as Crohns Disease, Celiac Disease, Tropical Spruce and others can also cause the body to malabsorb.
I would have to say that my condition is better now than it has been, and I hope for further improvement too. What is important is trying to get this problem, if you do have this problem, identified as soon as possible. The less damage done, the less there is to repair.
I really do feel for you, I know how hard it is for you at the moment. Believe me, I've been there and it gets to you. I know it's not easy but try and stay focused on getting the tests done and if you do have this problem, getting the right treatment. I hope the neurologist on Medhelp replies to you soon, they were a great help in getting my problems identified a few years back.
I hope this helps. Please feel free to ask anything else if you wish. Sometimes it just helps talking with people who have been where you are now.
Good luck
Graham
I am now 50 years old. It was back in 1998 that I weny to my doctor complaining of occassional mild tingling in my lower legs and feet, and very slightly in my arms. I had also just not been feeling up to the mark, tired and occassionaly slightly light headed, almost just a slightly off balance feeling.
My doctor did usual blood tests, ie blood count, thyroid, liver function etc, but no b12 test as I wasn't anaemic. I had what would be considered a stressful job, and he put it down to perhaps overwork.
My symptoms over the next year, really stepped up untill I was fatigued all the time. My muscles were sore and tender and tired very easily, even the soles of my feet were sore. I also felt very foggy headed and my memory was badly effected. Other symptoms too, including heart palpitations.
It took me far too long to get treatment, I started injections over two years now, which means I went untreated for about five years. I noticed pretty much straight away after the injections began that I wasn't falling asleep as much, but I still didn't feel well. Gradually I have gotten better in general, but my sore muscles, tingling and tightness remain.
I have gone through patches after treatment started when I didn't feel well at all, but it's hard to say if this whole sad affair was just taking it's toll on me, or whether the treatment was making me have ups and downs.
It could also be my stomach/bowel inflamation problem which is partly responsible for me not feeling good. You have to remember that if you have a b12 deficiency problem, then you have to have a reason for it. Unless you have a diet devoid of b12, or very low, such as a vegetarian or vegan, then you have a problem causing you to be low.
I have an inflamation problem and diverticulitis, which they only discovered when they eventually looked. The area of the small bowel, at the Ilium, was damaged and that is the area of the bowel which absorbs b12 into the body. Other problems such as Crohns Disease, Celiac Disease, Tropical Spruce and others can also cause the body to malabsorb.
I would have to say that my condition is better now than it has been, and I hope for further improvement too. What is important is trying to get this problem, if you do have this problem, identified as soon as possible. The less damage done, the less there is to repair.
I really do feel for you, I know how hard it is for you at the moment. Believe me, I've been there and it gets to you. I know it's not easy but try and stay focused on getting the tests done and if you do have this problem, getting the right treatment. I hope the neurologist on Medhelp replies to you soon, they were a great help in getting my problems identified a few years back.
I hope this helps. Please feel free to ask anything else if you wish. Sometimes it just helps talking with people who have been where you are now.
Good luck
Graham
Have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? Maybe after your dental treatment?
If so, you may be suffering from an adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting pain and other symptoms like you describe. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Most doctors don't know anything about the condition and often tell the patient it's all in their heads.
If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://******.******.*****.com/group/quinolones
If so, you may be suffering from an adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting pain and other symptoms like you describe. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Most doctors don't know anything about the condition and often tell the patient it's all in their heads.
If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://******.******.*****.com/group/quinolones
I don't know where to begin ... reading this post is like reading the difficulties I have had.
I have not been tested for celiac sprue, which is what I believe may be the cause of my difficulties. I finally got to the doctor during the time I was feeling awful (racing heart at inappropriate times, vomiting, weak, fatigue, bruising, bone and muscle pain, headaches). I recently found a (MSN,ARNP,CDE) in my local doctor's office that has seen me sick and listened to me enough to send me for testing.
My MCV, Hematocrit and hemoglogin are all normal. I had resorted to going to get my blood tested (women's panel) on my own. The only thing out of the ordinary was my WBC counts which have a weird trend to them gradually increasing neutrophils (I don't have the results in front of me so I can't write what the other granulocytes were like). Sorry a little side tracked -
I recently went to this same woman for awful jaw pain. I went to the dentist first who said it was not a dental problem and to me to go to my GP. They gave me tegretal for suspected trigeminal neuralgia - after two weeks of tylenol and one night of pain medication every 4 hours - and not much sleep) - I was able to sleep. I was sent for blood work B12 220 and Iron 45 (the iron in february was 78). I was also sent for a MRI and they found a small (REALLY SMALL BENIGN TUMOR on my trigeminal nerve) which could have cause the trigeminal neuralgia. A week ago a gastric emptying test revealed that I had slow gastric emptying, which could cause the vomiting.
I don't know what to think ... I am 30 years old and these "illnesses" are trend toward people older than myself. I just learned that BC could deplete my body of vitamin B, which my GYN failed to tell me.
I am sorry to write a book but I don't know what to think anymore. If taking some type of vitamins would help me feel better I would love to know what to take instead of heavy medications (right now I am just taking what i need to avoid that awful pain). I read that low B12 can cause all of the problems that I am having - including the numb limbs which I thought was carpal tunnel (although, I do type most of the day at work). Now because a small schwannoma was found I am being sent to a neurosurgeon for possible surgery - no thanks- although I'll go to the appointment. How do I know that it was not there already? or the TN is not being caused by the low b12. Maybe I would feel differently if the other things could be explained. I am actually comfortable with the woman I am seeing right now - I hate going to the doctor and have to feel horrible for going but at least now i am getting some answers and not just leaving and getting a cold a few days later.
I did not know about the cipro thing - had problems with my kidneys in december and have felt worse in the past few months ... I hesitate to take medication for that reason. My husband and mother agree that I may want to get my medical records together and go to a major hospital for a diagnosis BUT what kind of specialist would I see? I am going nuts because sometimes I feel so bad that I think I just won't wake up one morning ...
thanks for your time hope I did not write tooooo much
wndchyme
I have not been tested for celiac sprue, which is what I believe may be the cause of my difficulties. I finally got to the doctor during the time I was feeling awful (racing heart at inappropriate times, vomiting, weak, fatigue, bruising, bone and muscle pain, headaches). I recently found a (MSN,ARNP,CDE) in my local doctor's office that has seen me sick and listened to me enough to send me for testing.
My MCV, Hematocrit and hemoglogin are all normal. I had resorted to going to get my blood tested (women's panel) on my own. The only thing out of the ordinary was my WBC counts which have a weird trend to them gradually increasing neutrophils (I don't have the results in front of me so I can't write what the other granulocytes were like). Sorry a little side tracked -
I recently went to this same woman for awful jaw pain. I went to the dentist first who said it was not a dental problem and to me to go to my GP. They gave me tegretal for suspected trigeminal neuralgia - after two weeks of tylenol and one night of pain medication every 4 hours - and not much sleep) - I was able to sleep. I was sent for blood work B12 220 and Iron 45 (the iron in february was 78). I was also sent for a MRI and they found a small (REALLY SMALL BENIGN TUMOR on my trigeminal nerve) which could have cause the trigeminal neuralgia. A week ago a gastric emptying test revealed that I had slow gastric emptying, which could cause the vomiting.
I don't know what to think ... I am 30 years old and these "illnesses" are trend toward people older than myself. I just learned that BC could deplete my body of vitamin B, which my GYN failed to tell me.
I am sorry to write a book but I don't know what to think anymore. If taking some type of vitamins would help me feel better I would love to know what to take instead of heavy medications (right now I am just taking what i need to avoid that awful pain). I read that low B12 can cause all of the problems that I am having - including the numb limbs which I thought was carpal tunnel (although, I do type most of the day at work). Now because a small schwannoma was found I am being sent to a neurosurgeon for possible surgery - no thanks- although I'll go to the appointment. How do I know that it was not there already? or the TN is not being caused by the low b12. Maybe I would feel differently if the other things could be explained. I am actually comfortable with the woman I am seeing right now - I hate going to the doctor and have to feel horrible for going but at least now i am getting some answers and not just leaving and getting a cold a few days later.
I did not know about the cipro thing - had problems with my kidneys in december and have felt worse in the past few months ... I hesitate to take medication for that reason. My husband and mother agree that I may want to get my medical records together and go to a major hospital for a diagnosis BUT what kind of specialist would I see? I am going nuts because sometimes I feel so bad that I think I just won't wake up one morning ...
thanks for your time hope I did not write tooooo much
wndchyme
forgot to mention that during the "icky" times my lymph nodes are swollen also ... will not having enough b12 cause that also?
There needs to be a questionaire at major medical centers that ask what have you been diagnosed with so we can help you find the root of the problem.
There needs to be a questionaire at major medical centers that ask what have you been diagnosed with so we can help you find the root of the problem.
A lot of your symptoms sound like fibromyalgia. Why would you have a vitamen B12 deficiency if you eat normally and take a multivitamen?
Are you only taking B-12 or is it a combination B vitamin?
I have true B-12 definiency with a B-12 of 89 when found also my MCV, hgb, hct has always been normal. It is possible to have low B-12 & a normal CBC...I'm living proof. I'm not sure what the poster meant by subclinical, unless it's a B-12 between 200-400.
This is a good web site for B-12 info ... http://brain.hastypastry.net/forums/showthread.php?t=57840
I have true B-12 definiency with a B-12 of 89 when found also my MCV, hgb, hct has always been normal. It is possible to have low B-12 & a normal CBC...I'm living proof. I'm not sure what the poster meant by subclinical, unless it's a B-12 between 200-400.
This is a good web site for B-12 info ... http://brain.hastypastry.net/forums/showthread.php?t=57840
Your B12 levels can be checked with a simple blood test.
Don't take any supplements as it will throw off the test...you want to know what your body is doing naturally first
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