Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Numbness and tingling as dominant symptom.

Discussion in 'Peripheral Neuropathy' started by thegiantess, Jan 12, 2013.

  1. thegiantess

    thegiantess

    Messages:
    49
    Likes:
    5
    So, I was stumbling around the internet when I came across this great resource! So, let me ask y'all for your opinions on my situation.

    I have had numbness and tingling in hands, feet, arms and legs on and off for about 2 months. It started with a shingles outbreak that ran across the chest and therefore caused numbness in my left arm. Fast forward a few months and suddenly both arms are doing pins and needles and then sometime around Thanksgiving my feet started to do it as well. It came and went, but in the past 2 weeks it has been pretty persistent. It is worse on the feet when I exercise.. or rather, after exercise. Anyway, my regular GP told me she thought it was stress, but ordered a B12 test. It came back elevated.. 1257 pg/ml... Which isn't that major. So she told me to lay off the supps which I wasn't really doing. A few days ago I went to see a functional med guy and he said he thought it was B12 deficiency and that I have a problem absorbing B12. So, that lead me here when searching for the functional B12 deficiency.

    So, here's the question.... That's really my only major symptom, although I am always irritable.. always have been. Also, in the past few months I have had intermittent tinnitus, general aches and pains and acid reflux. But overall I feel good.. I am never fatigued or tired really. In fact I would say I have the opposite problem of being restless and a little wired.

    For the past few years I have eaten a Paleo style diet, but for 13 years before that I was a vegetarian and 2 years, Vegan.

    Please give me any thoughts you might have. Do I just start taking the B12 and see if it works? Any other suggestions? Further testing?

    Thanks!
     
  2. Crux

    Crux Senior Member

    Messages:
    910
    Likes:
    576
    USA
    thegiantess

    Hi ;
    I'm beginning to understand how B12 deficiency is so difficult to diagnose. Very few people have all of the textbook list of symptoms.

    Maybe I'm lucky, heh, to have had most of them, so, at least I can recognize well enough to suspect this condition with other folks.

    The numbness and tingling in hands and feet, are classic symptoms of B12 deficiency.

    B12 has antiviral properties-- it was used in the past to treat Shingles,and now it's being used in combination with antiviral drugs to treat Hepatitis C. I had consecutive shingles outbreaks with crippling neuropathy for 4 yrs. . During that time, I began B12 supplementation, but it wasn't until I increased the dosage, that the outbreaks slowed. ( The increased dosage is recent, so I'm observing the results now. No outbreaks for more than a month, so far. good sign.)

    Many people with B12 def. have tinnitus. Mine has been healed, but for some, it remains. ( could be other causes)

    My debilitating fatigue started more recently, in the past 4 yrs., before that, I would fluctuate between excessive and low energy.

    Irritability can be from many causes, including B12 def., but mineral deficiencies can cause it too.

    My guess here is that testing can be very helpful, specifically, the types that people here are having. ( much more sensitive )

    My other guess is that a trial of high dose B12 sublinguals could be surprisingly beneficial.
    Many people here have had high serum levels,and a functional B12 deficiency as well. The serum B12 test is non
    -specific. ( Sometimes I feel it's an obstruction to diagnosis.)
     
  3. xks201

    xks201 Senior Member

    Messages:
    713
    Likes:
    267
    i had far higher b12 levels than you. I seriously think there must be a connection here because we CFS people display virtually every symptom of B12 deficiency.
     
  4. Furball

    Furball

    Messages:
    56
    Likes:
    48
    Hello,

    I had the tingling / numbness for about 6 months in my hands & right calf muscle. It's only on reading this thread that I realised that I no longer have it. I did mention it to My Doctor but to be honest it was just one of a long list of symptoms .
     
    Allyson likes this.
  5. thegiantess

    thegiantess

    Messages:
    49
    Likes:
    5
    I realize this response is now old, but just came back to the site and saw some people had replied! I am currently reeling from your reference to shingles. I had no idea there was a correlation between B12 and Shingles.

    Also, you mention that your energy levels wax and wane between excessive to low. That is me.. in a nutshell. Generally I have excessive energy.. and always ready to go, but sometimes I just bottom out for a few days to a few weeks. Strange.

    I am currently in a state of low energy and actually posted a new thread in the lab tests section of this site to try and get some feedback on MMA testing. Previously I have only done serum B12, but want to do MMA to get a more definitive answer. I just need to know if I need to stop B12 supps before the test.

    Had you taken an MMA test?

     
  6. Crux

    Crux Senior Member

    Messages:
    910
    Likes:
    576
    USA
    thegiantess

    Hi, I haven't taken the MMA test, but B12 supplementation will affect it. ( It correlates with adenosylcobalamin.) I don't know how long someone would have to stop the supps. to alter the results. (Some folks here have been diagnosed with elevated MMA, though. Sushi, for instance.)

    Other tests, such as for homocysteine, antibodies to intrinsic factor and parietal cells, etc. also require someone to stop B12 supps. for days to months. This can be dangerous for someone with nerve damage.

    My neuropathy can return within days of insufficient B12 intake. ( I go by symptoms, but at one time I had an elevated MCV.) My B12 serum levels are > 3000. pg/ml

    Most of the information about the antiviral properties of B12 is anecdotal, although doctors used to treat shingles with B12 injections. I have found it to work very well with the suppresion of the outbreaks, but I still have the virus because I will have outbreaks if I lower the dosage, take a less effective type/brand, or if I 'trigger' it.
    Here's a link to an article about the antiviral/antibacterial properties of B12. ( You have to download the free PDF.)
    http://www.mdpi.com/1424-8247/3/6/1711

    There was a time when I would have excess, restless energy, even times of hypomania in years past. ( 7 or more years ago.) Even though I wouldn't want that type of energy now, I really miss being able to be physically active.
     
  7. thegiantess

    thegiantess

    Messages:
    49
    Likes:
    5
    Thanks for the reply! In the past few days I decided to skip the MMA test and just go by symptoms. Like you, if I don't supp for a few days my neuropathy will return! There is little worse than that damn numbness and tingling... except for low potassium ;)

    I happened to come across some info of people talking about getting your MTHFR info from 23andMe, which I had done over a year ago. So, I did that.. and low and behold I am compound hetero for the 2 major MTHFR mutations. So, in addition to B12 issue I have a big time folate issue and other related methyl cycle problems. I have gotten back into the swing of supplementing regularly and have been experiencing the dreaded potassium drain symptoms which for me are extreme irritability and insanely bad itching. Itching to the point that I want to crawl out of my skin. As soon as I consume something with high levels of potassium, it subsides for a while. I am waiting for my potassium supplements to arrive in the mail today.

    Anyway, thanks again.
     
    Crux likes this.
  8. Allyson

    Allyson

    Messages:
    1,684
    Likes:
    679
    Australia, Melbourne
    I get intermittent numbness tingling and a warmth sensation in my hands feet and - rarely - torso - but it feels like it is traveling in a line ....say along a nerve. My neurologist shrugged it off.

    I am not sure if it is neuropathy or not.


    A
     
  9. Hi @thegiantess
    I am amazed. just read your story on this old thread. thats me! are you still here?

    - I was first vegetarian for years, then vegan (all my Indian friends loved it :D ), then paleo and now tingling and numbness.

    - b12 as well as MMA always normal, but in spite of this, some advanced b12/folate related organic acid was crazily elevated. I can dig out that stuff if you are interested. this made me try recommendations from Rich van Konynenburgs "methylation cycle block" paper, which rescued me.once when I was at the very bottom.

    - either too much or too little energy. yessss. me too. currently too much, sleep little, dont feel tired, about to find that it has several different causes.

    I am curious: what were your reasons you eat vegetarian, v egan, then paleo?
    and did you notice some triggers that worsened tingling and numbness?
    how are you doing now?
     
    Last edited: Jul 20, 2016 at 12:19 PM
  10. Hi Crux, do you know a thread on PR for this? I guess a lot of people have that, but my searches didnt result in any thread on this. "Restless energy" expresses the thing just perfectly. I would have a list of causes to contribute, some treatments, but also questions and I am very curious about triggers and causes in other people...
     

See more popular forum discussions.

Share This Page