Pinball

[Pinball]

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!

[MaryF Administrator]

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

[Pinball]

Thank you

[Manofmendip]

I second what my colleague, Mary, has said.

Dave

[jetjetjet]

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.

[Pinball]

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

[suntap]

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!

[Lure2]

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

[Yllek]

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.

[Herbs77]

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?

[Pinball in reply to Herbs77]

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

[Pinball]

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.

[Pinball]

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.

[Pinball]

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!

[Debbweb01]

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!!!

[Pinball]

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 !!