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Severe tingling, burning + pain in both legs

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moimystique
moimystique

​​

H​i everyone,

I've been having severe tingling and pain in both my legs (toes, feet, calves and knees) for about seven months now. On running a few tests, I found six months ago that I was deficient in vitamins B12 and D, which was set right. The neurologist said my symptoms were due to the deficiency, however, the condition has steadily worsened in spite of the deficiency being rectified.

Here are the tests I've done:

Vitamin B12 and D: Levels stable for the last 4 months

Thyroid: Normal

Sodium, calcium, potassium: Normal

Iron: Normal

Bloodwork, ANA, dsDNA all normal.

Rheumatoid factor negative.

The pain is worse at night and while lying down. The docs have told me I've got Restless Leg Syndrome. I took Pregabalin for about a month and Ropinirole for ten days but both didn't help with the tingling - in fact the side effects were terrible.

I'm not on any medication as of now and the pain + tingling has worsened, now almost constant, like there's electricity shooting up my legs all the time. I'm unable to do anything physically exerting like climbing stairs. Walking makes my feet hurt terribly (which I believe is not the case in RLS?).

Does anyone have suggestions to confirm the diagnosis? Is there something I'm missing? I'm due for an LS MRI, but the docs have said it is most likely to come clear.

Thanks a ton!

17 likes, 568 replies

568 Replies

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  • christy463
    christy463 moimystique

    Posted

    After having more than 25+ blood tests, several diagnostic tests, and being diagnosed with small fiber neuropathy as well as rhaynards syndrome, I have finally been diagnosed with Lupus. All of labs including the ANA came back normal until my rheumatologist ordered the ANITMITH antibody which game back positive. All of my doctors said it was VERY rare since my ANA was normal, but it is possible. So if you haven't had this specific test tan I would ask your doctor about it. It explains all of my symptoms.

    • jane75220
      jane75220 christy463

      Posted

      Glad to hear that you have been given answers.  Take care.   xxx
  • Snider9727
    Snider9727 moimystique

    Posted

    Your symtoms are exactly as mine and I also have been diagnosed as vitamin B12 deficient.  I am very interested in hearing what they find in your case.
    • jane75220
      jane75220 Snider9727

      Posted

      Hi Snider

      I do not wish to hijack your posting to moimystique but my signs and symptoms are exactly the same. I have a Vit D deficiency disorder and the neuro signs and symptoms of VitB12 deficiency wwith peripheral neuropathy. Unfortunately I tookk a sub lingual Vit B12 supplement prior to testing for B12 levels so obviously my results were inaccurate.However on reading the PAS website I find that the treatment recommended for peripheral neuropathy is vit B12 injctions irrespective of what the levels are.

      Best to google for yourself as I have not really explained it that well.

      Good luck

      ​Jane xx

      I just received this and thought that I would reply.

       

    • susan75999
      susan75999 jane75220

      Posted

      ThAnks Jane I have just had my bloods back and it is a vitamin D deficiency, it was just under the normal range but my symptoms have improved the last couple of days from taking supplement. I ignored GP and doubled up what he gave me after reading these posts glad I did thank you 😊

    • jane75220
      jane75220 susan75999

      Posted

      Hiagain Susan

      What was the Vit D level?

      What dose of vit D did you take?

    • susan75999
      susan75999 jane75220

      Posted

      I can't fully remember think it was 46 he put me on 400 but I have doubled that

    • jane75220
      jane75220 susan75999

      Posted

      46 is low. 800 i,u is only a mainteinance dose so you needed more. How did you work the dose out?

      Was the GP happy to do the test or did you have any problems in persuading him/her?

       

    • susan75999
      susan75999 jane75220

      Posted

      My GP just tells me it emotional or stress all the time, finally got him to do full blood screen, but would only give me this dose. That's why I doubled it, can you buy over counter

    • PinoM655
      PinoM655 jane75220

      Posted

      I have had Pre Neuropathy for 3 years and had all the blood test going. All levels great so I was interested in your comment on B12 irrespective of the levels. Are you yo saying your levels were fine, but you still take a supplement with success?
    • jane75220
      jane75220 PinoM655

      Posted

      Hi Pino Just seen our posting.

      Yes the B12 level was skewed anyway due to taking a Vit B12 sub lingual supplement. However the routine NHS B12 test if you can persuade the GP to agree to order it to be done is flawed because it is not measuring the amount of B12 at the cellular level!!!

      It is beest to google websites on pernicious anaemia. There is loadsof info plus scientific papers to back all this up.

      The idea is to treat the neuro signs and symptom suchnas numbness, burning of legs with Vitamin B12 injections every other day until signs and symptoms start to improve then inject once a week. These guidelines are laid down but not followed . Not allowed to put links on here.

       

    • PinoM655
      PinoM655 jane75220

      Posted

      Thanks Jane how did you arrange injections for B12. I cannot see my GP agreeing to this?
    • jane75220
      jane75220 PinoM655

      Posted

      I was advised how to go about it by experts in pernicious anaemia on a website for pernicious anaemia.
    • Jimjamcolly
      Jimjamcolly susan75999

      Posted

      I was taking 25000 iu a week..and the difference after 8 weeks was unreal..I'm on another 6 weeks course just to get it right up and I'm pain free first time in months

    • jane75220
      jane75220 PinoM655

      Posted

      Well Pino I bought them online.

      NB .Something I would not normally do but took the plunge on advice and recommendations from the forum  on which is set up for people with pernicious anaemia and where there are lots of scientific links as a precautionary measure .

      ​

       

    • jane75220
      jane75220

      Posted

       Pino If you PM me I can PM the link to you. 
    • jane75220
      jane75220

      Posted

      susan

      You have to be careful about not taking too much vitamin D. Calcium levels need  checking as well.

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