Intermittent pins and needles in toes and sometimes fingers

For the past few months I have been getting pins and needles and sometimes numbness in my toes. I don't have it all the time and seems worse when I am walking rather than sitting. I am also getting occasional pins and needles in my fingers. Is this what it is like if you are starting to get neuropathy or do you have it all the time.

Also if you have balance/dizzyness problems are they continuous or intermittent as this is also an increasing problem.

6 Replies

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  • Hi carer999

    Are they getting worse since you started supplementing with Vitamin B12?

    Do you know what your iron, folate and B12 levels are?

    I'm not medically trained but if you can provide more details there are others on here who will be able to give you good advice.

  • Hi clivealive . I only have the results from when I was tested over in February 2016 and found to have low B12. My results then were:

    Plasma folate level 9 ng/mL [4 - 20]

    Serum vitamin B12 level 110 ng/L [180 - 914]

    Plasma total iron binding capacity 55 umol/L [40 - 70]

    Plasma iron level 19.3 umol/L [9 - 27]

    The pins ans needles is worse than a year ago. Initially I just noticed it with certain footwear especially my walking boots and thought it was my feet changing. but now it is more and I am also getting a numb/strange sensation patch in the front of one of my legs.

    After my last B12 injection I had lots more energy but still had pins and needles The energy has gone and I am now really struggleing. A trip to the supermarket means I have to rest for the rest of the day. Tried to get my B12 injection 2 weeks early but the receptionist checked the date of the last one :(

  • Don't you just love it when the receptionist dictates your treatment!!!

    I think it would be a good idea to make an appointment with your doctor (if you can get past the receptionist) and ask for all three to be tested again before you have your next injection. It may be that your B12 will be a bit high because of your last injection - when was it ten weeks ago? - but it might come back low as too your Folate if you have not been supplementing that.

    The NICE guidelines for the treatment if you have neurological symptoms are below. Click on the link, then click on "Scenario Management" and scroll down inside the box to "Treatment for B12 Deficiency"

    google.co.uk/url?sa=t&rct=j...

    If you can get a quick appointment, make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even restart you on loading doses "until there is no further improvement".

    If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

    I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

    I struggled for a long time to get my "one size fits all" doctor to increase the frequency of injections as after 45 years with P.A. I was getting a return of symptoms in the run up to my next jab. Perseverance paid off...

    ​I wish you well and hope you get the treatment you need and deserve.

  • Thanks clivealive I will have a read. Unfortunately there is no one to go with me to the doctors for moral support.

    I think a blood test for B12 and folate would show high as I have been supplementing daily with 2500 mcg sublingual B12 and 600 mcg folic acid to try to feel better but not having much impact.

    I am trying to think of a way of getting the injections more often without a blood test, but not having much luck. When I started the injections she said I may only need them for a year to get my level back up so she may stop them and blame the way I am feeling on my ME/Chronic Fatigue.

    A rock and a hard place. If I try to get the frequency increase I may loose them altogether. So do I settle for feeling better for 4 weeks out of 12 or try to feel better for longer and then have that taken away.

  • As you have neurological symptom if you read the link I sent you tells the doctor that treatment should be to "Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."

    I don't know if ME/CFS causes neurological problems like pins and needles

    Here is a list from the NICE "Clinical Guideline of 2007" which says that healthcare professionals should consider the possibility of ME/CFS if a person has

    a) Fatigue with all of the following features:

    new or had a specific onset (that is, it is not lifelong),

    persistent and/or recurrent,

    unexplained by other conditions,

    has resulted in a substantial reduction in activity level,

    characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days).

    and

    b) one or more of the following symptoms:

    difficulty with sleeping, such as insomnia, hypersomnia,

    unrefreshing sleep, a disturbed sleep–wake cycle,

    muscle and/or joint pain that is multi-site and without evidence of inflammation,

    headaches,

    painful lymph nodes without pathological enlargement sore throat,

    cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing,

    physical or mental exertion makes symptoms worse,

    general malaise or ‘flu-like’ symptoms,

    dizziness and/or nausea,

    palpitations in the absence of identified cardiac pathology.

    Nope - no mention of neuropathy.

    Goodnight

  • clivealive Thanks for the advice. I have seen my GP. She is willing to consider 10 weekly injections but not 8 weekly without trying 10 weekly first. Even after I told her about the pins and needles she still wanted 10 weekly first.

    I told her I had been taking high dose B12 pills and she said they would do nothing for me. They only work for people who are not having any B12 in their diet.

    I have to go for a B12 and folate blood test. It will be interesting to see what my test results show especially as I have been taking 2500 mcg B12 and 600 - 800mcg of folic acid daily.

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