Neuropathy - It's back!!

Hi 47 yo male. 2 years ago after visit to neuro said it was mild distal neuropathy. Appeared to clear up. 3 months ago noticed my gait was unusual on the right side - kind of lack of control. 6 weeks ago started pins and needles in fingers and toes and numbness in hands and feet. Also tingle in left side of face. General stiffness and again weakness on the right side including arm and leg which feel 'heavy'. Woke up a couple of nights with severe numbness on left side and left hand but able to shake out. GP visit 4 weeks ago and have started to take B12. Visit to neurologist that I seen 2 years ago who suggests neuropathy has returned and could be B12 level so he's glad I've started taking B12. Don't like the symptoms or this journey. Have sharp pains in lower back occasionally but TERRIFIED of the similarity with MS symptoms.

anyone in the same boat?

Thank you, all comments greatly appreciated.

27 Replies

  • Were you given your B12 result BEFORE you started supplementing ? What are you taking and how much ? You will also need a GOOD B Complex to keep all the B's in balance. Sounds to me as if you need a series of loading B12 injections - which is the given Guideline where neurological symptoms are involved. Injections should be given until symptoms improve or stop.

    There is a Pernicious Anaemia Forum on HU - where there are many good people to help with B12 Deficiency expertly. It is a neurological condition if your result is under 500 - and needs to be around 1000 to prevent cognitive decline.

    The above website will tell you everything you need to know about the treatment - additional testing - letter to the Doc - videos of Doctor who was dying - and so on .....

    We have to educate ourselves in order to obtain the treatment we deserve.

    I would also have your VitD levels checked too .....

  • Thanks for being so quick off the mark Marz. I will check the B12 level when i visit the GP next week - Neuro did advise that the blood test can be unreliable but suggested a level of 600 should be ok - should i be concerned about MS? Neuro says this is NOT an MS!!

  • MS is often diagnosed when it can be B12 and VitD deficiency.

    The B12 test is a guide like so many other tests. Only 20% of the result is available to be utilised in the cells where it is needed. So your result could be even worse.

    Which B12 are you taking and how much ?? B Complex ??

    Once you are supplementing further testing is of no value as results will be false. Get your VitD tested.

    Always obtain ALL copies of your blood test result - they are legally yours. You need to monitor your own progress.

    I am not a medic - I have Hashimotos - Crohns and a B12 issue. Click onto my name to read my Profile and journey to wellness.

  • Hi Marz, im taking 1 mg of cyanocobalamim per day

  • Cyanocobalamin has to convert into other forms of B12 in the body - so you could try a different one - like Hydroxocobalamin. Is yours a prescription ?

    Do you take a B Complex as well ?

    Did you read the link I posted above ?

  • yes Marz mine is a prescription - as i say i have just started to take so i should give it a chance - the neuro suggests 6 months - i take no other supplements

  • I suggest you read the link I gave you. You will need a good B Complex to keep all the B vitamins in balance. B12 and Folate work together.

    The NHS prescribe Cyano as it is cheaper. Do your research.

  • Hi tooyoungforthis you might want to read this - 'Methylcobalamin is the specific form of B12 needed for nervous system health'

  • very interesting and informative, thanks linlow, this is just the support that is appreciated on this forum, i really appreciate your input

  • you are welcome. If you don't mind me asking, why are you on the lansoprazole and have you tried any alternatives?

  • i had a hiatus hernia and increased level of acid - i have cut down a lot on the lansoprazole and ive seen the side effects. i'm going to swap to the methylcobalamin and take 3 per day as recommended in the link you sent. im not too bad at the moment with the pins and needles and numbness but as the evening progresses i can feel those symptoms kicking in and i always waken up during the night with pins and needles or numbness in my hands and feet and find it very difficult to get back to sleep which is a real problem. during the day i still have this heavy feeling on my left arm and leg and now some neck and shoulder pain

  • 'Certain medications used to control ... acid reflux disease inhibit your body's ability to absorb vitamin B-12. Because your B-12 supplement may not pair well with your prescriptions, let your physician know ahead of time if you decide to take an over-the-counter supplement.'Is that had or have a hiatal hernia? Just wondered if that was connected to your increased acid. If you do still have the hernia it is possible you could 'repair' it yourself. If you don't, has H. Pylori been ruled out as a cause of the problem?

    Instead of taking Lansoprazole, there are other ways to redress the balance in your stomach but you might like to know if it is increased or decreased acid first. There is a simple test you can do - the bi-carb one

    I'll be back with more information later.

  • I need to accept this neuropathy diagnosis and as you suggest focus on the B12 - thanks again Marz

  • Are you on any meds that could affect your B12 ?

  • the only other medication i take is lansoprazole

  • .... how long ? It should be a short term treatment as it blocks the uptake of B12 and other vitals. No wonder you are having problems.

  • At age 51 I've just been diagnosed with Diabetic Neuropathy even though I've had numbness in my feet for years never really twigged what it was to be honest I thought it was just me getting older, my feet have started burning during the daytime now and it has been confirmed that I have it in my hands to my right side worse than my left.

    I had my right big toe nail removed this morning as I had an ulcer beneath it my toe was so numb I hardly felt a thing even when the surgeon accidentally cut to deep.

    I am very worried as my type 2 diabetes somehow lets my body make extra sugar during the nights which makes my sugars high in the mornings specialists seem unable to judge just how much extra sugar my body is making, which makes my morning sugars difficult to control. I'm taking Gabapentin for the nerve pain but it makes me feel lousy.

  • I recently read that Diabetics should have their thyroids checked - and not just the TSH - but the FULL profile. Pancreas and thyroid - are all part of the same system - the endocrine ! When you have chronic conditions it is worth having the basics checked - like Ferritin - Folate - B12 - VitD - these are not routinely tested and have to be requested.

    Have you found Dr Brian Mowll on-line. A recent on-line summit for Diabetes was very informative.

    Docs do not do dot-to-dot and treat conditions in isolation .....

  • Hi James,

    Sorry to hear your diabetes diagnosis. Hopefully your meds will help and settle things down soon. Marz has some good advice.

  • I'm going to to try B12. will up date

  • hi joe, what are your symptoms?

  • pins&needles in my feet.cramp & pain in my calfs.feeling like I'm standing in sand.also feeling of numbness in my feet.I have been taking 25mg Lycria twice a day for 6 or 7 months with not much improvement,now trying to ween myself off them

  • Is it a diabetic neuropathy or unknown cause?

  • had all the tests.all clear,not nerve damage???

  • Thats positive - looks like you are in the 1/3 unexplined category like mysely. Any weakness Joe? Im struggling down my right arm and leg, both heavy

  • started to have occasional pain in my right upper arm and pins&needles in my right hand fingers.started to have pain in my left hip,could be my age??? 80 next May.still go to gym 3 times aweek

  • I have checked out the B12 websites and I had my levels checked and the GP said I was fine, but after explaining my situation with neurapthy and taking Dexilant for Gerd. He agreed to let me give it a try. So I took 1cc injection per day for 5 day, then 1cc injection once a week for 5 weeks. Then tried the 1cc injection once a month, but had to go back to the 1cc injection per week. Numbness still there, but it sure beats the burning, shooting pains and the walking on glass sensation. I hate to say this but I think everyone has to figure out what works best for them. Good luck!

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