Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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numbness

Discussion in 'Peripheral Neuropathy' started by isobelcordelia, Dec 8, 2017.

  1. isobelcordelia

    isobelcordelia

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    Hi guys, i'm new here. I'm 22 and 6 months ago I went to my doctor complaining of numbness in patches on my back, hip, arm and roof of mouth and some tiredness, nothing major just feeling sleepy throughout the day. Anyway, I was diagnosed with ME, it runs in my family too. But these numb patches won't go away. I also have heavy limbs on one side, which my mum suffers from too. Anyone have anything similar? Oh I've had about 7 different neuro exams from many different doctors and all have been fine
     
    i-lava-u likes this.
  2. Mary

    Mary Moderator

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    The numbness could be from a B12 deficiency. My sister who was a long-time vegetarian had numbness and tingling on several different areas of her body. She had crap insurance and could not afford to see a neurologist. I told her to try B12 and within a week her symptoms went away. Vegetarians are notorious for being deficient in B12. Low B12 would also make you tired.
     
    pattismith likes this.
  3. isobelcordelia

    isobelcordelia

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    ah i've tried B12! Nothing works :(
     
  4. Mary

    Mary Moderator

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    How much B12 did you take, and what type?

    Also, did your doctors do B12 testing?
     
  5. isobelcordelia

    isobelcordelia

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    just a tablet a day! Not sure how many mg. And yes apparently it was fine!
     
  6. Helen

    Helen Senior Member

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    Hi Isobel, I have the patchy numbness like you, so I consulted an experienced neurologist. He couldn´t explain this.symptom, but my ME- and Lyme doctor did. He told me that the patchy sensory loss is typical with Lyme, and doctors should know that.

    Heavy limbs are also common with Lyme infections. Sorry for my bad English but it´s late here, and I just wanted to share my experience if it could be of help. Best of luck!
     
    Last edited: Dec 9, 2017
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  7. isobelcordelia

    isobelcordelia

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    ah thank you! I'm hoping it's nothing too serious.
     
  8. Eastman

    Eastman Senior Member

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    What exactly was the B12 reading? Some people consider the test normally done for vitamin B12 to be unreliable. For example, from this site:
    Several nutrient deficiencies have been associated with neuropathy, but your mention of tiredness and sleepiness made me think of vitamin B1 deficiency (see here for details).
     
    Mary likes this.
  9. Tammy

    Tammy Senior Member

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    I've also experienced numb patches. I don't know how many neurologists I went to that couldn't give me any answers . I now believe it is viral related. I have chronic EBV.
     
    Last edited: Dec 10, 2017
    i-lava-u likes this.
  10. Mary

    Mary Moderator

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    Hi @isobelcordelia - I don't think a tablet a day could rule out B12 deficiency. See @Eastman's post above. And if you had a B12 deficiency, I don't think a tablet a day would be enough to fix it. And it's impossible to have any idea without knowing how much B12 was in that tablet, as well as what form it was - cyanocobalamin or methylcobalamin are the most likely.

    Also, B12 is notorious for being difficult to absorb when taken orally. Many people do better with sublingual B12, or injections. Though I find a liquid sublingual (methylcobalamin) works best for me.

    This is what my sister took - 1 teaspoon a day - and her symptoms disappeared after about a week: https://www.iherb.com/pr/Now-Foods-...VhK_sCh1_mAVSEAYYASABEgLuSvD_BwE&gclsrc=aw.ds

    It's all very individual, others would do better with straight methylcobalamin or hydroxocobalamin, though this product be a relatively cheap and easy thing to try.

    And of course there are other possibilities like lyme or other B vitamin deficiencies or a virus, as noted above. There's probably no easy way to find out what is going on - I think most of us go after the most likely targets and if they are not the answer, then the less likely or obscure - it's often just a matter of trial and error in figuring out what's going on, unfortunately. And also of course educating ourselves is extremely important - I don't think we can rely on doctors. Most don't know enough.

    (a tip - if you put the "@" sign in front of someone's user name when replying to them, they will get an alert that you have responded (like @isobelcordelia or @Mary), or if you just hit the reply button to their post, they will get an alert also)
     
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  11. Helen

    Helen Senior Member

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    I would definitely have at least an IgM and IgG Lyme test to start with. My ME-doctor is very experienced re both Lyme infections and ME.
     
    Mel9 likes this.
  12. isobelcordelia

    isobelcordelia

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    Thanks everyone! Just got my blood test back and I have really low vitamin D! I'm on 20,000 iu a day for ten days then once a month for two years!
     
  13. isobelcordelia

    isobelcordelia

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    thanks @Helen I will, my dad suggested the same thing
     
    Helen likes this.
  14. i-lava-u

    i-lava-u Senior Member

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    I get numbness/tingling on most of my right side of body and now a bit on my left side as well. I also get nerve pain on much of my right side mixed in with muscle weakness/heaviness, most prominent in my right arm (feels like encased in cement)

    it started out in my right foot, then right hand and slowly over the years now affects most of right side. about 3 years ago the left side started in same pattern (fingers and now hand and foot). i first became ill w ME/CFS in 1995 (after mono), numbness/tingling started around 1999.

    i have been tested and negative for:

    lyme (blood, MRI and spinal tap), diabetes (but reactive hypoglycemia positive) extensive blood panels, MS (multiple MRI on brain, neck and spine as well as spinal tap) and nerve conduction study. the only thing always low has been vitamin D and always high is EBV

    the one test i have not had is for small fiber neuropathy which i am hoping to have done this year.
    https://en.wikipedia.org/wiki/Small_fiber_peripheral_neuropathy
     
  15. serusaert

    serusaert

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    @i-lava-u i have a similar pattern of neuropathy (my left is your right) and am also seeking to have the IENFD test. i see a neurologist for first consult in two weeks. the nerve pain, tho rare, thankfully, can be really sharp and intense. @isobelcordelia, i also had a negative EMG test. this kind of neuropathy is not, initially, measureable via EMG as it does not strongly affect the large fiber nerves, however, i think that the results of the EMG could change as the neuropathy progresses as loss of small fiber neurons will likely eventually affect the larger, myelinated bundles. i think that the IENFD is probably the most definitive test for this - not that there is anything we can really do about it :(

    that said, i take LDN which seems to help and i'm considering FMT - i am having the initial phone consult with the UK Taymount clinic in a week.
     
    Last edited: May 11, 2018
    i-lava-u likes this.
  16. i-lava-u

    i-lava-u Senior Member

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    good luck with your testing @serusaert :) I hope you find some answers. Please keep us posted!
     
  17. Markus83

    Markus83

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    How can it be that none of the doctors tested for Lyme disease? I would recommend to do a IgG Western Blot for borrelia, not just the Elisa.

    Did you have a differential blood count, CRP and ESR? How were the results?
     
  18. pcmenten

    pcmenten

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    Hi Isobel. I hope this finds you in good health. I'm also hoping you can give us an update - any new developments?

    - Paul
     

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