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Old 06-23-2012, 11:13 PM #1
xliquidx22 xliquidx22 is offline
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Default New to forum plz help

Hey guys my name is vic im new here , really lost and confused dont know what to do anymore to make a longstory short ive been dealing with neurological/nervous systme disorders for a year now with no diagnosis yet but one of the docs i saw does beleive it is nervous system related , im just a student and going through a county hospital so you guys can imagine how frustrating it is , after ending up in the ER EIGHT TIMES this month they finally agreed to give me a neurology appt which is 7 months away!

some of the symptoms ive been dealing with is Irritability, apathy, sleepiness, paranoia, personality changes, depression (including post-partum depression), memory loss, dementia, cognitive dysfunction or deterioration, fuzzy thinking, psychosis, dementia, hallucinations, Abnormal sensations (pain, tingling, and/or numbness of legs, arms trunk or anywhere) , diminished sense of touch, pain and temperature, loss of position sense, weakness, clumsiness, tremor, paralysis, vision changes, sound sensitivity , feelings of vibrations that within my body that hit my head very hard to describe , also anytime i walk more than 20 feet my heart stats racing and my blood pressure skyrockets i feel like im going to pass out!

i am a 24 year old male have had catscans,mri's all negative , really lost at this point what can this be does anyone have any ideas? i know its hard to diagnoise over the internet but any advice would be helpful i really feel alone, one thing to i did get a b12 blood test which came back at 242 range : 200-1100 , doctor said that was normal and nothing to worry about but still i saw that being low and managed to get my hands on some methylcobamine injections i take 5,000iu every 3rd day along with 2,000iu daily of lozenges ( i know im taking alot but i really want to get my levels up and see if it helps) from what i understand b12 is none toxic so shouldent be an issue ,

i told my doc ive been taking b12 shots and said its a waste of time since my b12 "is in range" and im fine with that but still doenst make sense im only 40 points away from being considerd deficient that just doesnt seem right to me , two weeks in now with my b12 therapy not only im not getting better but im getting worst! starting to think the doc is right b12 is not related to my issues what could it be then? neurology is 7 months away im going nuts im lost!
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Old 06-24-2012, 06:22 AM #2
glenntaj glenntaj is offline
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Default Welcome to Neurotalk.

And, I'm with you--I think that B12 level is rather low, and could be behind some of the symptoms you describe. That old reference range is rather outdated; most new labs begin the low end of the range at least around 400 and many in Europe and Japan at 500-550. The best labs have no upper end to the range--as you noted, B12 has no known toxicity level.

This looks like it might take further investigation at a teaching hospital or tertiary facility (if it is possible for you to get to one). In the meantime, I think it is good that you are supplementing; many of us here recommend constant oral methylcobalamin dosing in the range of 1000-5000mcg/day, rather than injections, as that way your body is regularly flushed with B12.

If you haven't already, you should come take a look as some of the following forums/threads here--a lot of literature, expertise, and commentary:

http://neurotalk.psychcentral.com/thread85103.html

http://neurotalk.psychcentral.com/forum119.html
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Old 06-24-2012, 03:47 PM #3
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Angry

Thank you for the references already read through those , am i being to unpatient? does b12 injections take longer than two weeks to take effect? can all those symptoms i mentioned even be related to b12? so confused....
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Old 06-24-2012, 04:04 PM #4
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Lightbulb

When people are low.... and you are low... less than 400, then B12 is moved out of the serum into the CSF around the brain, and also stored in the liver. It will sometimes stimulate red cell production and this can lower serum potassium. Not in everyone but some. So make sure you are eating potassium rich foods.

I hope you are taking your oral B12 on an empty stomach, for best results. The methylcobalamin injections need to be refrigerated while stored also.

I am wondering how a young male was diagnosed with post partum depression?
Quote:
ive been dealing with is Irritability, apathy, sleepiness, paranoia, personality changes, depression (including post-partum depression), memory loss, dementia,......
I wouldn't go to that doctor anymore!

Here is a link to a medical page for you to give your unbelieving doctor: It is specifically written for doctors, but easy enough for most other people to understand as well. Seems your doctor needs some continuing education.

http://www.aafp.org/afp/2003/0301/p979.html

B12 is not a cure all for everything. In fact commonly people low in have insomnia, not the reverse. Many psychiatric symptoms may be due to some other reason.
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Old 06-24-2012, 04:21 PM #5
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Thanks for the reply , besides the psychiatric symptoms some of the other stuff im experiencing like numbness in my arms,sensitivity to sound,heat sensitivity, body temperature changes, waking up with my hands numb in the morning,ect,ect can this be related to b12 as well?
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Old 06-24-2012, 04:26 PM #6
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Lightbulb

numb hands and arms upon waking up can be do to low blood sugar during the night.

Eating high carb high sugar food, sets the stage for all sorts of low blood sugar attacks. I'd start eating better, low sugar low starch/carb food choices.
You will find you hands don't go numb at night like before.
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Old 07-03-2012, 12:27 PM #7
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Default hllo xliquidx/ Vic

Welcome to Neuro Talk. I am so sorry that you are experiencing all those symptoms at such a young age. In general county hospitals are not the source for diagosing neruological problems. I don't know if you can, but I would seek a teaching institute, and or Mayo Clinic. Your PCP could refer you to that facility. I went to Mayo myself, and did get a dianosis, and really good care. It would be worth the trip to any good location, to find out what is wrong with you. The not knowing is terrible. I can't believe they made you wait for 7 months. You can get into Mayo quicker than that. Have you had a lumbar puncture? What others tests have they given you besides the MRI? I hope you can find some resolution with your symptoms. Neruo talk will stick by you no matter what as you go through all this. I found this site two years ago and never left. It has been a souce of compassion and understanding. Glad you found us. ginnie
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Old 07-03-2012, 11:08 PM #8
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Originally Posted by ginnie View Post
Welcome to Neuro Talk. I am so sorry that you are experiencing all those symptoms at such a young age. In general county hospitals are not the source for diagosing neruological problems. I don't know if you can, but I would seek a teaching institute, and or Mayo Clinic. Your PCP could refer you to that facility. I went to Mayo myself, and did get a dianosis, and really good care. It would be worth the trip to any good location, to find out what is wrong with you. The not knowing is terrible. I can't believe they made you wait for 7 months. You can get into Mayo quicker than that. Have you had a lumbar puncture? What others tests have they given you besides the MRI? I hope you can find some resolution with your symptoms. Neruo talk will stick by you no matter what as you go through all this. I found this site two years ago and never left. It has been a souce of compassion and understanding. Glad you found us. ginnie

Thanks for the response ginnie whats a mayo clinic and where are they located? im broke so if its anything that requires money i wont be bale to do it , havent had a lumbar puncture they said its not needed since my MRI came back normal , ya the worst part of this all is not knowing what you have and just going crazy , the only real diagnosis i have is b12 deficiency at 242 but ive been taking b12 shots and lozenges for a month now with very little improvement also i wouldent imagine how symptoms like facial numbness,heat sensitivity,sensitivity to sound ,vision problems, fast heartbeats,feeling like passing out when walking can be related to something simple like a vitamin b12 deficiency , if was it indeed b12 wouldent a month be enough time to see improvement in all those? so confusing....
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Old 07-05-2012, 10:39 PM #9
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mrsD is there anyway of getting a personal email address of a memeber here who doesnt post anymore? theres one member here with the name of nerveendings he posted a thread about b12 deficiency causing sensitivity to loud noises and light besides all my other symptoms hes probly the other only person ive came across who has sensitivity to sound and has b12 deficiency would love to talk to that guy and see how hes progress is going he would probly also offer valuable advice any way to get in contact with him?
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Old 07-06-2012, 12:28 AM #10
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Quote:
Originally Posted by xliquidx22 View Post
mrsD is there anyway of getting a personal email address of a memeber here who doesnt post anymore? theres one member here with the name of nerveendings he posted a thread about b12 deficiency causing sensitivity to loud noises and light besides all my other symptoms hes probly the other only person ive came across who has sensitivity to sound and has b12 deficiency would love to talk to that guy and see how hes progress is going he would probly also offer valuable advice any way to get in contact with him?

Sorry we don't give out personal information.
You can PM (private message ) that member, here's the profile page link - http://neurotalk.psychcentral.com/member.php?u=38460
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