I hope its ok for me to post here and I apologise in advance for the long post. Ive just been feeling very alone with these symptoms. i dont really feel like telling friends and I also wonder if it is appropriate to post here as I have no diagnosis just a bag full off odd symptoms. But if anyone wants to continue reading Id be glad of some support…
Last Sept 2011 I began noticing strange sensory symptoms including tingling, prickling and vibration in my arms and legs, dizziness - often when sitting it just felt like the room was beginning to turn, muscle twitches all over and little (non visible) spasms or aches in my hands and feet as if they were being pulled together and often a general vibration feeling in my body.
I live abroad and went to my GP here who was quite quick to send me for an MRI of head and neck (without contrast) with the question of an inflamatory disorder and sent me to a neurologist. The neurologist noted that my vibration sense was slightly reduced and that i had very brisk reflexes (including a self limiting clonus which obviously puzzled him but which he said can also be normal) . Then the MRI (without contrast) was clear so it was assumed there was no MS/inflammation and I was told to come back if I had more symtoms. After a while the symptoms subsided and I thought that was it.
Almost a year later, this summer I started again noticing strange symptoms, for two weeks my left arm felt so heavy, as if i had just had an injection in the upper arm and the ache went into my forearm and fingers. It often felt as if the arm had just been asleep and was reawakening. Also again I feel like I am vibrating or buzzing or trembling sometimes throughout my whole body. I feel tiny spasms in my hands and feet and I feel dizzy again and sort of distanced from everything around me. Then for three days when I bent my head forward I felt a strong vibrating sensation at the back of my left leg ( like a mobile phone but with a pulling feeling as if there was a string joining my neck and leg). I looked online and read about Lhermittes and although it didnt sound like a classic case it was like swtiching a switch, i would bend my head forward and i would vibrate in my leg and bend my head back and it would stop but suddenly after three days it stopped and now when I bend my head forward there is nothing so not quite sure what that was…
So as you can see Im not in terrible pain or agony, I just feel something isnt right and its coming back again. I also read that MRIs without contrast only show old lesions and not new „active“ ones and since the episode I had when they did the MRI was the first of it’s kind it would have seemed logical to me to use contrast as I may have not had any old lesions to see. So I do wonder if I should return to the neurologist now?
Im sorry about this LONG post but its the first time Ive “opened up” and well, somehow I just wanted to share what Ive been experiencing and not feel quite so alone with all these strange things, maybe someone has been through something similar and can relate to what Ive written.