Discussions By Condition: I cannot get a diagnosis.

Internal shaking/bodyburning/GERD and others

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: daisykf
  • February 2, 2009
  • 09:45 PM

I started having weird symptoms 3 years ago 2 days after havingmy first child. I woke up in the middle of the night with the feeling of my body burning and numb tongue and hands and feet. For the last 3 years i have had the numb tongue that sometimes just feels like i burnt the end and then others i will get dizzy and it will go completely numb but never really felt bad.
I gave birth a year ago and a week after giving birth the numbness in tongue got really bad and burning in legs and feet. I also get the feeling that my body is shaking/vibrating all the time but noone can see it. With came numbness in legs/feet, pain in joints especially in breast bones and in middle of back(where the rib cage ends). I will get a strange taste in my mouth and will get very dry and tongue will go white. When i take these spells i have really bad GERD and nauseous and a few bowel movements. Have lots of symptoms but no one can tell what is wrong.
Have had CAT scan of head and MRI of head and cervical spine. Had CAT scan of abdomen that showed lesions on my spleen but all my bloodwork has come back fine. Had scope of eshophagus, had Lower Gi barium x-ray, had muscle never test, had lots of blood work: CBC, blood clots, TSH, Free T3, FSH, estrogen, progesterone, ANA, CRP, Lyme and numerous x-rays of neck,chest. I even find my cheek bones , legs and neck hurt bad like muscle spasms. Muscles feel tight. I am only 27 years old and am tired of feeling like this. Just wondering what it could be, but defiantley has started with the numb tongue. Please help!

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21 Replies:

  • Well... i was hoping that someone would have at least written one response. I feel helpless and scared cause I don't know what is going on?Can anyone at all tell me what causes a numb tongue(besides anxiety, tried antidepressants and anti anxiety med and didn't help a bit) or what causes burning/tingling in lower legs and feet? Does anyone have internal shaking. I have heard its been associated with MS, ALS and thyroid/hormonal probs. Any ideas?
    daisykf 21 Replies
    • February 3, 2009
    • 09:25 PM
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  • I started having weird symptoms 3 years ago 2 days after havingmy first child. I woke up in the middle of the night with the feeling of my body burning and numb tongue and hands and feet. For the last 3 years i have had the numb tongue that sometimes just feels like i burnt the end and then others i will get dizzy and it will go completely numb but never really felt bad.I gave birth a year ago and a week after giving birth the numbness in tongue got really bad and burning in legs and feet. I also get the feeling that my body is shaking/vibrating all the time but noone can see it. With came numbness in legs/feet, pain in joints especially in breast bones and in middle of back(where the rib cage ends). I will get a strange taste in my mouth and will get very dry and tongue will go white. When i take these spells i have really bad GERD and nauseous and a few bowel movements. Have lots of symptoms but no one can tell what is wrong.Have had CAT scan of head and MRI of head and cervical spine. Had CAT scan of abdomen that showed lesions on my spleen but all my bloodwork has come back fine. Had scope of eshophagus, had Lower Gi barium x-ray, had muscle never test, had lots of blood work: CBC, blood clots, TSH, Free T3, FSH, estrogen, progesterone, ANA, CRP, Lyme and numerous x-rays of neck,chest. I even find my cheek bones , legs and neck hurt bad like muscle spasms. Muscles feel tight. I am only 27 years old and am tired of feeling like this. Just wondering what it could be, but defiantley has started with the numb tongue. Please help! Hi Daisykf, A beef-red burning tongue is a hallmark symptom of vitamin b12 deficiency. Numbness of tongue isn't normally mentioned in the same context. You have a lot of symptoms that could be b12 related and a lot that don't appear to be. If you do have b12 deficiencies going on you also seem likely to have other things going on. If you came over to http://forums.wrongdiagnosis.com/showthread.php?p=143070#post143070 looked at the list of symptoms, signs and co-correlates you might find some possible help on some things if yiou saw yourself in those. Some folks there do speak of feeling vibrations. The vitamins wouldn't hurt you and might have a payoff. The muscle burning and pain, spasms would generally be accompanied by intense fatigue. With b12 deficiencies often there would be tingling and other strange feelings rather than going dtraight to numbness. With the numbness there could be loss of position sense of your limbs. Do you have that? Have your reflexes been tested? What about vibration sense in your affected areas? Have yuou had a thorough neurological exam? Triggerred a week after giving birth also might be an indicator as various stressors can trigger a deficiency. What about depression. Was there post partum depression?
    Freddd 3,576 Replies
    • February 3, 2009
    • 10:19 PM
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  • I did have vitamin b12 checked a week after getting these symptoms and was told it was fine. I thought it was some vitamin deficiency also. I did have neurological exam and Mri and ct scan. Had reflexes checked and a nerve conduction tests to check for nerve damage. Everything appeared to be fine. I was sent to a psychiatrist cause they thought the numbness was due to Post partum and was treated but the meds didn't help. I had the numb tongue for 3 years and far from being depressed. I also get a strange taste in my mouth and sometimes extreme burning in my throat.
    daisykf 21 Replies
    • February 3, 2009
    • 11:14 PM
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  • I did have vitamin b12 checked a week after getting these symptoms and was told it was fine. I thought it was some vitamin deficiency also. I did have neurological exam and Mri and ct scan. Had reflexes checked and a nerve conduction tests to check for nerve damage. Everything appeared to be fine. I was sent to a psychiatrist cause they thought the numbness was due to Post partum and was treated but the meds didn't help. I had the numb tongue for 3 years and far from being depressed. I also get a strange taste in my mouth and sometimes extreme burning in my throat. Hi Daisy, "Nevertheless, the diagnosis of functional vitamin B12 deficiency had been long delayed because of normal serum vitamin B12 levels although a metabolic investigation of the cellular vitamin B12 status had not been performed."..."This article emphasizes the need, at any age, for extensive investigation of the vitamin B12 status in patients with neurological symptoms whose clinical picture is consistent with vitamin B12 deficiency and in whom the serum vitamin B12 level is normal"http://archneur.ama-assn.org/cgi/con...ull/60/10/1457These articles, and many others, indicate that "normal" serum levels are no assurance of no funtional deficiency. Only a b12 trial can tell you that. Serum levels and tell how low you are but can't tell you that you don't have b12 responsive symptoms. In studies conducted on the basis of symptoms, about 2/3s of responders to methylb12 therapy would have been excluded from the studies if they had limited admission based on test results. It's a little more complicated than going down to the store and buyiong any old b12 supplement. First of all in tests, only 2 of 10 brands produced excellent results. Second there are two active forms of b12 and a person can be deficient of either or both of them. And third, there are important cofactors without which even the best b12 might not work. Come on over to http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=160 the b12 forum go to the end and read backwards. Check out the list of symptoms, talk with people there who have had responses despitre "notmal" b12 levels. My docs always said "b12 deficiency" right off the bat and then saw that I was taking 1000mcg a day of cyanob12 and changed their minds. If they had stuck with what they saw they would have gotten it right. They didn't. So this might be your lucky day. Come on over and try it out. If you decide to order and do so from www.iherb.com and use the coupon code RED843 you will get $5 off your first order and I'll get that off my next order too. They have excellent prices and everything you need with good service. Good lucjk and good health.
    Freddd 3,576 Replies
    • February 3, 2009
    • 11:53 PM
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  • what causes a b-12 deficiency and why would it be after giving birth?
    daisykf 21 Replies
    • February 4, 2009
    • 00:33 AM
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  • what causes a b-12 deficiency and why would it be after giving birth? Hi Daisy, There are a number of causes of b12 deficiency. Only a couple can be specifically tested for. If a person eats a vegetarian diet they will be deficiencty as only animal foods contain human usable cobalamins. If a person eats meat, etc then diet isn't the reason. A person might have reduced absorbtion because bariatric surgery (weightloss surgery), gastritis, reduced acid because of acid reducers, a lack of intrinsic factor needed for absorbtion for a number of reasons. Then there are more suble reasons. Some persons for unknown reasons have a reduced amount of cobalamin in cerebral spinal fluid causing a form of deficiency that exists in the presence of an entirely satisfactory blood serum level, they may not be able to transform the form found in meat that is used in the mitochondria to the type used for DNA replication or they may not be able to convert the form found in liver to the kind needed in mitochondria for energy. These variations produce 4 different b12 deficiencies plus combinations. Further, they may not have the necessary factors for transport within the body or the factors needed for effective usage of the b12 that is there. Most folks never know exactly why they have funtional deficiencies. Those that sit on the edge of functionally sufficiency can have a triggerring event such as an illness or vaccination or physical trauma or strain (ie childbirth) that causes a temporary demand for more b12 of either variety than they have availalbe and for some reason it starts a downward spiral of events. Most folks don't have the money for extensive and expensive testing to know exactly why even if it could be found out when the solution is exactly the same regardless of the reason. If one takes both active b12s and cofactors and get's well, that's what is really desired. It's an easy hypothesis to test. One bottle of each of 4 supplements will either have a beneficial effect or not. If it does, the effectiveness can be explored and expanded upon by adding certain cofactors, if not then the person needs to keep looking for what is wrong. It costs less than $50 to test this hypothesis adequately to know whether it can help, but not how much. That takes longer and trying more cofactors to optimize results. People without functional deficiencies can take the active b12s all day and cofactors and never have any response at all. The responses are rarely subtle for somebody that is genuinely deficient with multiple symptoms, even in the most basic trial. From the list over on the b12 forum I had 175 symptoms etc 6 years ago. Today I have 27 left, mostly damage from longterm deficiency and a car wreck 37 years ago. Good luck.
    Freddd 3,576 Replies
    • February 4, 2009
    • 01:44 AM
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  • I read on that forum that someone had stated that that nitrous oxide(laughing gas) can cause b-12 to lower. Is that the same gas they give u when in labour?
    daisykf 21 Replies
    • February 4, 2009
    • 02:04 AM
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  • I read on that forum that someone had stated that that nitrous oxide(laughing gas) can cause b-12 to lower. Is that the same gas they give u when in labour? http://www.pregnancy.com.au/nitrous_oxide_for_pain_relief_in_labour.htm Sometimes. Nitrous oxide "permanently oxidizes" methylb12 and adenosylb12. The b12 is then inactive and eventualy excreted and replaced with active b12s, if available.
    Freddd 3,576 Replies
    • February 4, 2009
    • 06:21 AM
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  • Daisy , I've heard of loads of cases where people have tested ok for B12 but have still taken it and got better.These test are often not correct .Get some supplements anyway because they certainly won't do you any harm.I can't function without supplements and recommend them to everyone .Make sure they are 100 % natural ones. Good Luck
    carla 12345 18 Replies
    • February 4, 2009
    • 05:41 PM
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  • Yeah i have been taking a vit. b12 but not a high dosage, how much should i take? I am also not 100 percent sure its b12 deficiency cause of the numb tongue and the numnbess varies. Also the internal shaking is really bad and can't take naps because of it.
    daisykf 21 Replies
    • February 5, 2009
    • 01:19 AM
    • 0
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  • Yeah i have been taking a vit. b12 but not a high dosage, how much should i take? I am also not 100 percent sure its b12 deficiency cause of the numb tongue and the numnbess varies. Also the internal shaking is really bad and can't take naps because of it. Hi Daisy, It's very difficult to be 100% sure. Without a trial there is no way to be 100% sure. As far as how much is enough let's consider the situation. There are four kinds of b12 on the market; two inactive and 2 active forms. The active forms are 100 to 10,000 times more effective than the inactive forms. Most vitamins are the inactive forms that have little effect. Of the active forms not all brands are created equal. In tests by 5 hypersensitives of 10 brands of methylb12, 2 of 10 brands were outstanding, one brands was totally inactive for the testers and 7 brands were mediocre. Of the two most effective active brands if you take them one way, they might absorb as much as 1% or if taken the most effective way 15% or more. Then what you take them with and what other things you are deficienct in can make at least a 10 times difference in effectiveness of the b12s taken. There are lots of ways for the b12 to be either the wrong brand, taken ineffectively or not taken with the cofactors that would allow them to be most effective. Over at the b12 forum we have worked through all these things and found what brands work best, hjow to take them for best effectiveness and what else to take to give them the best chace to be effective in the body. http://forums.wrongdiagnosis.com/showthread.php?p=143413&posted=1#post143413 Come on over and ask you questions there. In addition to the best brands of the two active forms of b12 taken in a way to maximize absorbtion there are 7 or so other critical cofactors and a host of nutritional basics needed for healing. If you want to know what is the minimum needed for testing whether you could benefit from b12 is one thing or how to get maximum healing is another. Whatever you are taking is not likely to be as effective as the answers received to those questions could direct you to.
    Freddd 3,576 Replies
    • February 5, 2009
    • 11:50 PM
    • 0
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  • Any other ideas????? Has anyone had the internal shaking or vibration before? I have it 24/7!
    daisykf 21 Replies
    • February 6, 2009
    • 11:14 AM
    • 0
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  • Does anyone have any ideas? Just wondering what causes tongue numbness or internal shaking? Please help!
    daisykf 21 Replies
    • February 12, 2009
    • 10:08 PM
    • 0
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  • DaisyIt sounds to me like you have something very similar to, if not, fibromyalgia. I have the same symptoms - plus the internal shaking and GERD.Also there are loads of internet forums (google internal shaking) which suggest links with hormones/peri-menopause. I know you're very young for that but it could be hormone related and fibromyagia is also affected by hormones.Please don't worry - there are lots of us out there who are shaking and vibrating away silently. Doctors don't seem to know what causes it, and I struggled for a long while coming to terms with it all. But eventually you just learn to live with it and I pray that one day I'll suddenly wake up and realise it has gone.Do check out the fibro.God bless xx
    bogie1 1 Replies Flag this Response
  • Have you tried a chiropractor? I had a lot of the same things. The strange taste is probably pressure on the lingual nerve. A lot of these symptoms come from the parasympathetic and sympathetic areas - all of which are located in the neck. Also creates very tight muscles!!
    Anonymous 42,789 Replies Flag this Response
  • Thanks... i also thought it was hormonal considering it started after having a baby! However all my hormone tests keep coming back fine. I keep thinking its my thyroid however they tell me its not so..... I am hoping that it will eventually go but i have had it for 16 months now!
    daisykf 21 Replies Flag this Response
  • No, I haven't tried a chiropractor but have had x-rays done on my neck and a MRI done on my cervical spine and it showed nothing. Did u find it helped?
    daisykf 21 Replies Flag this Response
  • No, I haven't tried a chiropractor but have had x-rays done on my neck and a MRI done on my cervical spine and it showed nothing. Did u find it helped?Daisy, did you ever find out what was causing your internal shaking and did you get relief from it?
    Anonymous 42,789 Replies
    • August 18, 2009
    • 03:22 AM
    • 0
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  • Hi there, Wondering if you ever found out what is wrong? I have the exact same symptoms. I had my first child 3 yrs ago. I have been shaking for about 6 months 24/7. I am 37 yrs old. Also have the white tongue, reflux, rapid heart, and strange muscle pain.Please post:)Thanks
    Anonymous 42,789 Replies
    • August 22, 2009
    • 02:25 AM
    • 0
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  • Nope its been 3 years and still no answers...see another specialist tomorrow... he checked my adrenals and did some more blood work so going to see.... Daisy, did you ever find out what was causing your internal shaking and did you get relief from it?
    daisykf 21 Replies Flag this Response
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