24/7 lower leg fasciculations

Hello,

I am new to the forum and any advice would be greatly appreciated. I have been having nonstop lower leg fasciculations/pins & needles for about two months now. I went to a neuro, who found no clinical weakness and no issues with a brain MRI. He told me to chalk it up to stress, which I really don't buy.

I followed up with my GP and requested a B12 test since I went out to conduct some research of my own. Results came back at 298 p/mol, and I had been taking an oral Vitamin B supplement on and off for roughly a month and a half before that. I am now in the familiar battle with my GP to look further into the B12 situation since many, many medical journals state that total serum levels <300 p/mol should be investigated further (plus mine may have been further elevated due to supplementation).

To begin, has anyone experienced similar symptoms to mine? Could this be a early sign of damage due to deficiency? And if so, any recommended next steps?

12 Replies

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  • Have seen post reporting similar symptoms so quite possible it could be B12

    Not sure if you are UK based but this alert might help in getting the GP to recognise that they really do need to look at clinical position and not just go on test results

    ukneqas-haematinics.org.uk/...

    There is also the BCSH guidelines - summary - treat if neuro

    bcshguidelines.com/document...

    see page 2

  • Hello,

    I am actually living in Shanghai, China at the moment and am originally from the States. What would be the next recommended blood test in your eyes? I am thinking the active B12 analysis (holoTC) but I cannot find a lab that will test it here.

  • You have a choice of trying to go for holo-T

    I'd suggest you try for MMA and homocysteine either first or as well. These are two waste products that will build up if you don't have enough B12 as the body isn't able to recycle them into useful building blocks, so they can help to clarify if blood tests are in the grey area - which yours certainly are.

    Best of luck

  • Hi,

    Some more hopefully useful links. I've assumed you are UK based.

    bmj.com/content/349/bmj.g5226

    patient.info/doctor/pernici...

    patient.info/doctor/macrocy...

    patient.info/doctor/full-bl...

    patient.info/doctor/iron-de...

    patient.info/doctor/non-ana...

    patient.info/doctor/folate-...

    Websites

    b12deficiency.info/

    b12d.org

    pernicious-anaemia-society....

    01656 769 717

    If you leave a message they will get back to you within a few days.

    martynhooper.com/

    Books

    "Could It Be B12" by Sally Pacholok and JJ.Stuart

    "What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

  • Thank you kindly for the links!

  • Another follow up question - if I continue the follow up with no success (meaning a reluctance of my GP to pursue further testing), what would be my best option to self-treat? I figure if it is a B12 I could some sort of regimen and see how I feel.

    Any recommendations on what would be a good place to start?

  • Sublinguals 100mg or 5000mg of metholcloblamin are the best.

  • Ask your dr to refer you to a gastrologist they will investigate all your symptoms and can also tell your dr to give b12 for life and check for other deficiency s and and causes

  • About testing ..as well as the active B12 test there is MMA and homocysteine.

    b12deficiency.info/b12-test...

    Have you already had an IFA (Intrinsic Factor antibody) test?

    The IFA test is not always relaible, some people still have PA even if this test comes back negative.

    A blood film (aka blood smear) can also help. B12 deficiency can cause changes in the shape of some blood cells eg hypersegmented neutrophils and enlarged red blood cells.

    Have you had tests for folate, ferritin and a full blood count (aka complete blood count in US). There can be useful clues on a FBC.

    High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells) which can be found in B12 deficiency but not always. A patient who has both iron deficiency and b12 deficiency may have red blood cells that appear to be normal size as low iron can lead to small red blood cells (microcytosis) and low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). A blood smear can show both microcytic and macrocytic cells in a blood sample.

    patient.info/doctor/periphe...

    patient.info/doctor/full-bl...

    There can be many causes of b12 deficiency besides PA (Pernicious Anaemia). See list below. lots of useful info on this website.

    b12deficiency.info/what-are...

    Have you ever eaten raw or undercooked fish? I know of someone whose severe B12 deficiency was caused by a fish tapeworm. The story is told in Martyn hooper's latest book.

    nhs.uk/Conditions/Tapeworm-...

    I think someone with a fish tapeworm infection sometime shows increased amounts of basophils on the FBC.

    have you had any surgery involving nitrous oxide? Nitrous oxide can cause severe B12 deficiency in some cases.

    gov.uk/drug-safety-update/n...

    martynhooper.com/2015/08/22...

    I am not a medic just a patient who has struggled to get a diagnosis and wants people to have useful info.

    The PAS welcomes members from all over the world.

    pernicious-anaemia-society....

  • It could also be low electrolyte levels - that causes those symptoms. Your doctor can test you for that.

  • Hi. I've had a bit of a rollercoaster since being diagnosed in July. Doctor gave me 4 x loading doses of hydroxo (injections) a week apart. A month later I wasnt feeling any better, so I asked for the remaining 2 (as per BSCH guidelines) which I got. A month after that I had blood tests done and went to the doctors the following week to discuss the results. As my B12 was "high" at 800 and something I was told I should be feeling fine! At that point I started using skin patches (1200mcg methyl, with 400mcg folic acid) 3 times a week, a sublingual liquid (cyano) daily and swallowing a B12 complex multi vitamin daily. I thought that it was obviously up to me to keep myself healthy. After about 4 weeks I started improving so I cut back on everything but the skin patches. I then had my 3 monthly dose of hydroxo so I cut out the skin patches but only lasted a couple of weeks until I felt truly awful, so I crammed in my skin patches again. I had been reading up so I tried Methyltetrahydrofolate with sublingual Methyl B12. After 2 weeks of this, my hand and feet were in a bad way - worse than before. So here I am after 5 days of skin patches (day after day) and using the sublingual lozenges one a day, and my hands and feet are improving - so much so that I've only got a bit of an ache in my hands as I type this.

    To sum up, if no-one is going to help you, find whats suitable for you and help yourself, especially with this type of neuro problems. If, after 2-3 weeks theres no improvement, go back to the doctor and explain what you tried.

    I've recently discussed all this (with loads of back up paperwork including a list of what I'd been taking and how I felt) with the most sympathetic doctor in the surgery and he reckons I'm not doing myself any harm and was actually apologetic that the only thing he could prescribe me on the NHS was the hydroxo injections.

    Good luck!

  • I suffer from restless legs if that is the same thing. For me taking iron tablets is the thing that helps most. I also have pernicious anaemia and understand that iron is needed to help utilise B12 in the body. So maybe there is also a connection with B12. I believe that some people find that zinc helps too.

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