Hi all! I've been lurking here for a while without posting. I have a question. Does anyone have twitching in both legs that you can actually see (sort of like when your eye twitches)? If so, is it worse at night, and does it wake you up? It's not restless leg syndrome. Do your feet also burn ( not related to diabetes)? Is this another wonderful APS thing? I've had my vitamin B12, D, and magnesium levels checked, along with thyroid levels. All normal. I also had an emg/ nerve conduction test done. No results yet. Any feedback would be appreciated. Thanks!

18 Replies

  • Firstly well done on being so thorough with testing. I know a lot of people on here have twitches of one kind or another.... MaryF

  • Thank you

  • I second what my colleague, Mary, has said.


  • I have been threw all of that to come up with no answers-- just barely stopped having NOT to bandage my left foot that was wasting away since Feb 2015. a wound that would not heal it was scary

    i also get muscle twitching all over my body --i have two types of tremors and also real bad muscle spasms- i get 36 shots in my back for this--next week start needle therapy for this problem.

  • So you don't think it's a APS thing but a back problem? Do your feet burn?

  • Hi Pinball

    Yes, I have the same symptoms with my feet and legs. It all came on after my PE's last year, along with all my other APS symptoms. I do not have diabetes. I have had nerve tests done and yes, there was a problem. In the winter I joked that the burning in my feet was keeping me toasty warm! :)

  • Hi Pinball,

    I wonder if you are properly anticoagulated? Do you have an APS-Specialist who understand this illness?

    Best wishes from Kerstin in Stockholm

  • Yes I have this problem. I have twitching and my toes move randomly on their own! I have intermittent severe pain in both legs. MRI and nerve tests were normal. I am not diagnosed but had one positive and one negative blood test. I'm seeing APS Specialist privately next week as my last hope for help.

  • You say you have had B12 and Thyroid tested and they are ok. Can you say what was tested and what was the result? I say this because the TSH test is not reliable and if you have been told you are in the "normal range" chances are you may well not be "for you"! I had burning feet for quite some time and it turned out to be my thyroid. Its imperative that you get the FT3 and FT4 drilled into as even some minor changes there can make a big difference. Also Vit D - is yours ok? As that can cause issues such as yours. It should be at least 75 - 80. As for B12, be aware that you should be at least over 400 and if you are not then you could well be deficient and that can cause your twitching and restlessness. Its a classic symptom which a lot of Doctors overlook. If its not dealt with you can go on to get neuropathy so its really important to take it seriously. Look up Pernicious Anemia there is a site on HU.

  • My TSH is 1.94,

    T4free 1.2,

    T3free 2.6,

    vitamin B12 -1258,

    vitamin D is 48.

    I'm in the US and the labs say all are with normal limits. Thanks for any input you can give me.

  • My TSH is 1.94,

    T4free 1.2,

    T3free 2.6,

    vitamin B12 -1258,

    vitamin D is 48.

    I'm in the US and the labs say all are with normal limits. Thanks for any input you can give me.

  • Hi Pinball,l I need the reference ranges for these results too please. That way I can see whereabouts in the range your results fall. Unfortunately different labs have different ranges so its difficult for me to comment unless I see those. I could speculate but that would not be fair.

  • Sorry about that!

    -- ------------- reference range

    My TSH is 1.94, ---------- 0.40 - 4.50 mIU/L

    T4free 1.2, -- --------- 0.8 - 1.8 ng/dl

    T3free 2.6, ------------ 2.3 - 4.2 pg/mL

    vitamin B12 -1258, ------------- 200 - 1100 pg/ml

    vitamin D is 48. ------------ 30 - 100 ng/mL

    An ultrasound test came back, office staff said I have a small goiter in my neck. We are going to watch it. Thanks again for any feedback!

  • ok so as someone who has Thyroid issues if my thyroid results came back as yours I would be back to my endocrinologist quick smart! FT3 and FT4 are much too low they need to be at the top of the reference range for the thyroid to be working efficiently. Therefore you may well need a change in the meds that you are taking. Don't concern yourself with the TSH result although that will probably go lower once the others go higher.

    As for the goiter - again find a good endocrinologist as this could be interfering. Did they do your thyroid antibodies? -Thats TPO and thyroid globulin? If not thats really important with a goiter to be checked.

    Vit B12 looks good but Vit D needs more supplementation it should be 75 -80!

  • Thanks for the information. I will have the antibodies checked. I have increased Vit. D. I was taking 5000 IUs , I will now take 7000 IU. Stay well !!

  • Dunno about foot burn but I have twitchybfeet and legs, drives the boyfriend mad sometimes! I'm used to it tbh. Had your iron levels checked?

  • I have not had my iron checked but I will. Thanks. Yes, It's so annoying.

  • Yes it keeps me and my poor hubby up at night! Horrible! Somethings my feet burn too, but the spasms are extremely difficult and painful in a weird way! I am up half the night even with Muscle relaxer my vascular surgeon gave me! He's really the only one that knows and understands what's going on with my right leg! Even though my left leg was amputated due to Undiagnosed APS, the part of my leg that's left also gets these spastic things! It helps sometimes if I dangle during the night, but fell outa bed once cuz I was dangling amputated leg and in my sleep forgot it was gone and had a really bad fall!!! Don't know what they'll do, but right now my vascular Doctor is only one who really understands me! Dr. ERKAN is new to me yet and very nice! He did tell me I was very complicated tho, which I knew, but never expected Him to say that! I guess cuz he's a big Doctor in APS AND A BIG RESEARCHER! So it's taken me bak a bit that he thinks I'm complicated! I've been dismissed many times by doctors who think I'm "Too COMPLICATED!" Lost my leg cuz they didn't know Wat to do with me till I got to my Vascular surgeon who yelled at me for going to a different one! I didn't go to my regular one because President Obama screwed me up badly and he didn't take my insurance anymore! I worked in St. Francis The heart Hospitalno with him and he said he'd have seen me for free, but I didn't know that!!!

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