louloutinks Posted July 8, 2011 Report Share Posted July 8, 2011 Hi allI started to have thumb twitches a while ago on and off. My thumb would move by itself and you could see the muscle moving at the base of my thumb, small, regular movements. It happens at rest. Well I ignored it but have now started to get my two second toes doing the same thing and I just cannot stop them moving. It is getting more and more frequent and longer with time. Also, they all seem to start twitching together - usually.I have been told I have thoracic outlet and am having an MRI to confirm it - but the twitches are on the other hand to my TOS. To be honest they are starting to drive me nuts now - my toes and thumb are having a dance competition right now lol....seriously though, what is this about? Quote Link to comment Share on other sites More sharing options...
enko Posted July 8, 2011 Report Share Posted July 8, 2011 I have the same problem, but usually with my legs.. for example, on my right leg there were same two fingers twitching every now and then for two weeks! Then it stopped by itself.. Don't know what to say.. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted July 8, 2011 Author Report Share Posted July 8, 2011 Hi enko,you have just reminded me about when I stand up I have noticed that I get shakes in hands and arms and my muscles tremble in my lower back/butt. Pins and needles, numbness, pain, hearing problems, headaches, and this darn twitching - can it all be TOS!At least yours has gone Enko Quote Link to comment Share on other sites More sharing options...
enko Posted July 8, 2011 Report Share Posted July 8, 2011 Thank God that it's gone, it was making me crazy I do get random strange feeling (something between being numb and having needles) on my back and hands. It usually goes away in days time. Headaches are also often for me What do you mean under pain? My right knee hurts for weeks now.. like that I've hit it into a wall or something and I didn't.. I've tried a massage, stretching and strength exercises for legs, it didn't help. Also my feet are killing me with pain! It helps when I lift them up.. My lower back tends to hurt sometimes, but thankfully not so often Quote Link to comment Share on other sites More sharing options...
louloutinks Posted July 8, 2011 Author Report Share Posted July 8, 2011 Yes they are driving me nuts too!The pain I get is in my arm, neck, shoulders and chest - something to do with compression in the thoracic area and boy it is Pain (with capital P!). I wanted to cry the other night as I was in agony - I cannot wait for this to be dealt with properly!Have you got EDS? Quote Link to comment Share on other sites More sharing options...
enko Posted July 8, 2011 Report Share Posted July 8, 2011 Unfortunately for me, in our country (I'm not from US) all the diagnostics go very, veeeery slow.. and that is if the docs even have a clue what to look for.. if you stand out from the "normal everyday diseases" they don't know what to do, say it's nothing, it's normal, you're under conditioned, you're lazy, just seeking for attention, it's all in your head.. After painful and stressful seven months of diagnostics and convincing me that "I'm just like that, it can't be helped", my neuro prescribed me some SSRI's because it might help stabilizing ANS/CNS (she refused to write any official diagnosis!) and then based on that record my GP refused to give me the med and sent me to a psychiatrist I was really pissed and didn't go so now I'm not taking that therapy. At the moment only my dermatologist is taking me seriously, started me on H1-blocker and said to return in 3 months. Two more months to go. I'll try to talk to her about EDS.. and maybe with my neuro when I'll see her.. but unfortunately she's not too useful I think that my problem is probably some ANS dysfunction combined with mastocytosis.. At least H1-blocker is helping some, so I will probably first try to resolve things with my dermo (she at least listens) and then with my neuro. My only official diagnosis is urticaria.I've forgotten to write: my legs tend to move, sort of a kick, a twitch. Also sometimes I get twitching in my muscles, virtually it can be anywhere. I've tried to talk about it with most of my docs but they tend to act as they didn't hear it Sorry for whining, they are making me sad Quote Link to comment Share on other sites More sharing options...
louloutinks Posted July 9, 2011 Author Report Share Posted July 9, 2011 Sounds just like the UK!!At least the dermy is behind you. My fab doc left the surgery and I was left with other docs, as you say, if it is out of the ordinary rather than a cough or cold - they make you out to feel stupid. A new doc has thankfully come to the surgery who is superb and he has got this thoracic issue to be dealt with - the other two docs completely ignored a letter from A and E that I needed to see a neuro/have MRI - but this one is on the ball and very welcoming and willing to help. I have been hearing a lot about this masto on here - is it a thing that runs alongside ANS dys?Hope you get some answers soon enko...keep smiling Quote Link to comment Share on other sites More sharing options...
enko Posted July 9, 2011 Report Share Posted July 9, 2011 I've somewhere read that masto can have effects on nervous system so I guess they might go hand by hand.I'm soooo glad that you've found a great doc! That's.. well.. WONDERFUL! I really mean that! When I've found a new ophthalmologist that actually cares that I'm not in terrible pain with my eyes and cares to save the only eye left I was indescribably happy For some time I thought that I'm sleeping and that I'm going to wake up I LOVE MY OPHTHALMOLOGIST I'm also going to have brain MRI in two months.. I'll post an update. When I see how people here are supportive a smile pops up on my face Keep us posted on results and that wonderful doc Quote Link to comment Share on other sites More sharing options...
jbenz1772 Posted July 9, 2011 Report Share Posted July 9, 2011 Wow, It's like reading about myself when I read all these posts. I too have the muscle twitching and intense pain(not always together). It's usually my left eyelid and my upper arms and upper legs that twitch. A couple times it was my thumb or fingers. And weird when you can actually see the spasms. A handful of times I had complete body tremors, which started like I was chattering from cold with shivers but wasn't cold and then progressed until I had no control over my entire body in shakes. I also getting shooting ice pick feelings from my toes up my legs. Other times its such bad muscle cramps you can feel every muscle in my leg tightened up. Once I was in the grocery store with my daughter and felt my calves cramp and my feet hurt like I was walking with sand in my shoes then the limp starts and I get anxious. By the time I got to the car my lower half from waist down was cramping, sat there for a while and my husband wanted to come get us. I proceeded to drive home and crying the whole way. By the time I hit the driveway I was in full blown sobs and my husband ran to get the neighbor(my best friend) to help me out of the car to the garage. My BP at that time was 90/50. You'd think with my state it would have been through the roof. These things tend to happen to me when my pressure drops.Anyone else seem to have correlations to their BP???Jennifer Quote Link to comment Share on other sites More sharing options...
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