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Constant nerve tingling ,hands legs ,head..

Discussion in 'Peripheral Neuropathy' started by Righthammer, Oct 28, 2009.

  1. Mithriel

    Mithriel Senior Member

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    There is a condition called Paroxsysmal Dyskinesia, kinesegenic - caused by movement, that is intention tremor - and non kinesegenic - where your arm or leg suddenly flies up in the air or you get a constant shaking.

    It is usually genetic but people with neurological disease sometimes get it. I have heard of a few people with ME who have it. I became friends with a woman with MS who had it. It is distinct from the usual MS spasms and tremor. She moved exactly like me.

    She was told by her consultant that it may be that people with a genetic susceptibility express it if they get neurological disease.

    Mithriel
  2. Righthammer

    Righthammer

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    NO - my doc didnt think there was any point in sending me to a neurologist..He just says its probably a symptom of the cfs/me...I have persisted in asking for a neurologist appointment and have finally got one ..unfortuntly it says I probably have severe cfs so that will probably result in a lack of interest in the neurologist.

    My symthoms have waxed and waned oved the past few months were I have had weeks of little symptoms and then they come back with a vengence.The past week I have been shaking non stop especially my legs with shivering(no fever) with tingling in my hands legs and worst of all back on the top of my head.pounding heart etc..As a result I have had very little sleep ...I wake up after an hour or so..despite being exhausted.The only thing that gives some relief is zanax but that is only papering over the cracks ..MY eyes went bloodshot also the first day these shakes started..not sure what do do ..hate going to the docs..just feel they offer nothing but anti depressents which I have turned down to date.

    Magnesium supplementation had seemed to be helping ..now I'm not sure as all these symptoms are as bad as ever !! I take a b complex daily as well as other suplements ..cant really say if these give me any benifits.I still get severe pins and needles and often wake up at night with my arms gone dead or numb..have to try and shake them about for a few mins to get back feeling in them ..but ow and behold half an hour later it will happen again!!!
    I have had a few weeks lately where I thought I was improving ..sleeping well etc but things just flare up and now I am back to the daily battle to just survive !
  3. Gerwyn

    Gerwyn Guest

    tests for b12 mg etc are at best unreliable.i had the above symptoms and more----oral suppliments were no good but iv cleared them--some come back especially the parasthesias if i go too long without the IV mg or I am too late in the day with B12
  4. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Right,

    Sorry to hear that you are still experiencing symptoms. Have you had your B12 and/or magnesium levels checked to see if they are low. For me, magnesium was a key (as I have blathered about many times before), and I am hoping that B12 will help me too. I have recently taken tests for mineral levels (EXAtest) and for B-12 levels I did MMA by urine, plasma homocysteine, and serum B-12. I don't have the results yet. I am hoping that the results will give me more of a direction to go in without just guessing.

    Good Luck!!!!

    HW
  5. nanciswell

    nanciswell

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    I have not read the whole thread.. and sorry for any repeat info

    I get tingling on my skin.. alot in hands. face.. itching on my shins and this for me is from an amine chemical intolerance.. SO I avoid foods with amines.. ie aged meat, gelatin, some supplements using meat, fish etc.. etc.

    www.plantpoisonsandrottenstuff.info has info on amines.. IT could also be reactions to another group of chemicals.. ie sulfites, sulfur, salicylates, glutamates etc

    I do find taking zinc helps buffer the reaction /// but not enough to stop avoiding these things.

    nanci
  6. Righthammer

    Righthammer

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    Hi HW,

    yep have had B12 levels checked ..roughly about 350 I think..realise that this is not the best test and that homocysteine and MMa tests are better but my doc thinks my B12 levels are fine and does not want to check these further.It is hard to get any further tests done here in Ireland without an obvious problem showing in your blood.

    I'm not sure of any tests for magnesium other than possible private labs ? What test did you do to check this?

    I tried a magnesium iv before which totally floored me ..I was terribly flushed,sweating and felt terrible for a week after..left me too scared to try another iv...Recently started to supplement with magnesium which I though was helping untill this recent flare -up.My symptoms do seem to cycle which has me thinking possible lyme but my Elisa test which I know is unreliable was neg and having failed to tolerate a few days of cipro antibiotics for possible gastro infection ..I'm not sure if antibiotics are the answer..
    The neuro I am supposed to see has an interest in peripheral neuropathy so hopefully he will order the proper B12 tests ..not sure though how long it will be before I get to see him as I am still awaiting an appointment..

    Good luck with your results - hopefully they will give you a treatment direction !
    Nev
  7. Righthammer

    Righthammer

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    Hi Gerwyn - did you have any tests that showed you were B12 deficient before embarking on the B12 ivs? There is only one practioner here in Ireland offering Iv treatment that I know of and he is very expensive ..If I knew I was B12 deficient I guess I would def go for it.

    Nev
  8. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Right,

    It's a shame that docs make that assumption since the B12 serum test alone can be actually dangerous in letting B12 deficiency go undiagnosed. From the "Could it be B-12" book:

    Serum Vitamin B12 test can give false-negative results (elevated serum B12 levels in the presence of deficiency) in patients with the following conditions:

    -active liver disease (hepatitis, alcoholism)
    -transcobalamin II deficiency
    -intestinal bacterial overgrowth
    -myeloproliferative disorders
    -chloral hydrate medication
    -lymphoma

    It "can give false-positive results (low serum B12 levels in the absence of deficiency) in patients with the following conditions:

    -folate deficiency
    -pregnancy (although we question the validity of this finding, because it is possible that B12 deficiencuy in underrecognized in pregnanacy
    -multiple myeloma
    -excessive vit. C intake
    -transcobalamin I deficiency.

    I find it particularly disconcerting re the problem on intestinal bacterial growth which many CFS patients might have. In addition, the urine MMA adjusts for hypovolemina/dehydration which can be a problem in CFS.

    Can you get a copy of the book "Could it Be B12" to show to your doc? Do you think it would help? I understand the frustration of not being able to just ask for what you believe you need. I am not sure how much of these tests will be paid for by my insurance, but I decided to get them since I have some symptoms of B12 deficiency and trying to correct those doesn't seem to be horribly expensive.

    Unfortunately, Right, you would probably have to get a request from a private lab. As far as I know, this test is only offered in the US from a lab in Oregon. If you google EXAtest you will get information on them. The serum magnesium test is bascially useless, and the EXAtest was highly recommended in all 3 books that I read on magnesium. Taking magnesium has been a game changer for me. But I also need to say that I believe that I have had a magnesium deficiency for possibly 3 decades - long before I got CFS. Supplementing can be a little tricky given all the different brands out there and the fact that if you have a major magnesium deficiency it can take up to 1 year to correct if you are doing it with oral supplements. Still, I believe it is worth it.

    From the book that Rich recommends entitled "7-Day Detox Miracle" (yeah, stupid name, but a good book) has the following to say re magnesium:

    "Magnesium is the number-one mineral deficiency we see in our clinic. Such deficiencies are so common that we put all our patients on magnesium supplementation. The mineral is used in the treatment of asthma, cardiovascular diseases, diabetes, fatigue, fibromyalgia, migraine headaches, and PMS. The body uses it in more than three hundred enzyme reactions, generating energy and driving the detoxification machinery of enzymes".

    I am sure the IV reaction was very scary!! For me personally, I never went with IV's or injections because I am so sensitive to everything under the sun and have to start slowly. Also, when I first started taking mg I had no idea of what an impact it was going to have on me. As far as starting to supplement orally recently, keep in mind that it can take a while before it has an impact - up to a whole year if you are really deficient.

    Lyme disease is obviously a difficult and complicated issue. Keep asking for tests for that if you think it might be a factor for you. I have been tested several times for lyme (most recently by Dr. Lerner) and am always negative - altho that is not a guarantee that you don't have it. :-(

    As you already know, the peripheral neuropathy is a symptoms of B12 deficiency, so maybe the neuro will in fact order the tests that you need. You might need to be off of the supplements when you take the test to get an accurate reading. Good luck with getting an appointment in the not too distant future!

    Thank you very much, I am hoping to be deficient in B12 and potassium so I will have something else to work on.:Retro smile: The EXAtest test for minerals other than magnesium.

    One more comment on magnesium - it is contraindicated in the following:

    -kidney disease
    -myasthenia gravis
    -extremely low heart rate
    -bowel obstruction

    In addition, please check out any allopathic meds you might be on for possible interactions. Magnesium can make some meds more effective and others less effective.

    Good Luck!!

    HW
  9. dmholmes

    dmholmes Senior Member

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    Indeed serum B12 levels are not a good indication of body level of B12, and the reference ranges vary quite a bit in different countries. I was "low normal" in the US, the active B12 protocol brought me back to life.
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Woo-Hoo dm!!

    Nothing like some success now and then. And yes, you bring up a great point, the reference ranges can vary from country to country and I believe even from lab to lab. I am personally looking forward to showing a B12 deficiency.:Retro smile:

    Have you shared any detailed protocol of yours on the B12 thread? I am trying to work my way thru that thing. As soon as I get my lab results I hope to attack it head on.

    Thanks so much for sharing your good experiences with us,

    HW
  11. Righthammer

    Righthammer

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    Hi David- Congrats on your returning health - how long did it take for you to experience results on the active B12 protocol?
  12. dmholmes

    dmholmes Senior Member

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    Not only that, but the ranges are meant to identify things like pernicious anemia, low RBC, high MCV. Neuropathies and neurological issues can occur well above the lower end of the lab range. BTW, my serum level was 287.

    That is the protocol I'm using. Started over here.
  13. dmholmes

    dmholmes Senior Member

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    Hi Mr. Hammer :) I wish I had kept a journal. Brain fog and overall fatigue were better in the first couple of weeks. Two areas of pain that could not be diagnosed have disappeared (eye orbit, below shoulder blade). I still have orthostatic intolerance and some morning fatigue (adrenal perhaps).
  14. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi again David,

    Thanks for the direct link.

    HW
  15. Scarlett

    Scarlett

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    Hi Righthammer - I too have a lot of nerve symptoms, tingling, fizzing, a dull ache sometimes in the right side of my face. Recently I've developed a new one which is like a reeeeeaaaalllly tiny shiver, like a tremour, in my arms and legs after exertion. It feels like if you put your hand on my leg you'd feel it juddering, but actually you can't - it's really weird, like a buzzing. I also have sensations of cold water running down my right arm into my palm, when I'm really bad this drives me mental. Also a lot of strange things like phantom insects walking on the skin. I was initially diagnosed with a B12 deficiency and put in B12 injections every month, which I still take now I am diagnosed with ME/CFS as I do generally find them helpful. Just before Christmas I had a bad relapse and the two injections I had didn't appear to do anything, so we are experimenting at the moment by having a period without them to see what happens.
  16. vwprts4u

    vwprts4u

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    Does anyone else just have these sensations in half of the body? This to me kind of rules out the vitamin deficiency thing and suggests the central nervous system under attack . I am currently in relapse after a wonderful two months of normal life. The symptoms of tingling and buzzing are much worse this time but only present on my left side as in previous times.

    Chris
  17. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Chris,

    Welcome to the forums.

    FWIW, I don't think you can rule out a vitamin/mineral deficiency because the sensations are only on one side of the body. But then, I am the magnesium maniac, so you might want other's opinions.:Retro smile:

    Do you have insurance that would allow you to get some tests run? Running an EXAtest to look at mineral levels could let you know whether a defiency/overload was going on. In addition, it might be beneficial to run some tests to look at possible B-12 deficiency. In the book I just read, they suggest taking the following: MMA by urine, plasma homocysteine, and serum B12. Serum B12 alone won't give you much information. Freddd and others on the B-12 thread might know of other tests that might help you ferret out a deficiency there.

    Good Luck with whatever you decide to do, and please post and let everyone know how you are. Information that everyone shares here can help others!

    Take care,

    Maxine
  18. Righthammer

    Righthammer

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    Hi Scarlett - how are you getting on ?I hope you are feeling better. I have a constant vibration going on throughout my body especially when standing or if I extend my limbs fully.Still have the constant tingling everywhere (like pins and needles ) and my legs and hands are going numb a lot ..especially when I try to sleep.I have the cold water effect in both legs which is pretty wierd .I have an appointment with a neurologist in April - not sure what to expect ...would be happy to just get some relief from these symptoms. I did try Lyrica briefly but that just turned the tingling on my head to a burning one ..which scared the hell out of me..my doc was baffled so I quit that..I wonder if I needed to take Lyrica for a few weeks to get it to work properly... My symptoms do wax and wane and I have had some periods where I have had some relief only to be hit by another attack or crash a few weeks later .I wonder if Freds B12 protocol might help but I am waiting until I see the neurologist before I start to mess with these levels in case they interfere with any test results he might do.My b12 level was around 350 ng/l last time tested.
    I know my adrenals are wacked from a saliva test and that my free T3 is below range .These are the only abnornal test results I got but adrenal supplementation has not helped in any way so far .Not sure why my FT3 is low but my TSH and FT4 were normal so the doc said there was no issue there..but said that this should come into line if the adrenals responded .I wonder if a low FT3 could cause all the problems with the nerve tingling etc but it is hard to find any answers regarding your thyroid if your TSH and FT4 are normal as these are the only ones tested in Ireland.
  19. Gemini

    Gemini Senior Member

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    yes, left side for me, too.

    Gemini
  20. Scarlett

    Scarlett

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    My initial symptoms when I was first admitted to hospital with a suspected brain tumour were very much central nervous system, all down my right side. I could practically draw a line down the middle of my body and feel the difference between the two sides. My face was fizzing and aching and dead-feeling on the right, and my right eye felt like it had a lot of pressure pushing it out. The doctor saw something in it and rushed me for a brain scan. I also had contracting muscles (was suspected MS until very recent diagnosis) but only in right side, water sensations in right arm, weakness in right arm and leg. The left side was like another person! Now my symptoms in that respect aren't so bad - I had been working full time in a very stressful job up to that point and was pretty much killed off from it all - now I am used to pacing I know that I am pushing it when the right side of my face starts to feel sensitive and achy (like now actually, so I should go to bed!)

    Saw three neuroligists while I was in hospital, they did loads of tests, but couldn't work it out. All were baffled because it was obviously central nervous system but couldn't find any reason why. One of them initially suspected an unusual presentation of Guillan Barr syndrome.

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