Changing Faces
976 members147 posts

Does anyone suffer from violent motor tics, and varying levels of numbness/paralysis and allodynia?

I have no diagnosis and am unsure of whether I've ended up in the right place. Looking at this page I feel I am wasting your time as most of you seem to be in much worse situations than myself. I'm a 21 year old female and have been wheelchair bound for just under 3 months now as my legs have simply stopped working. I also have severe twitches/motor tics - it looks as though I am having a seizure however these are almost constant and I am awake and perfectly aware throughout. I'm really struggling to deal with peoples reactions towards me; strangers, friends and family. Any advice/coping mechanisms etc would be massively appreciated as it has got to the stage that I no longer leave the house, not purely due to peoples reactions but I would be a liar if I were to say that it is not a factor. The more stressed I get the worse the 'tics' become. Any feedback or personal experience would be truly appreciated. I know this is not a disfigurement but it would be amazing to speak to someone who truly understands how quick people are to make a judgement and the effect it has.

3 Replies

love your name dear beautiful disaster, have no idea where you live but if you are londonn try to get to the national neuro hosp in russel square london they are brilliant . i amso sorry for you, its difficult to tell what your problems are but the national neuro hosp are pretty clued up. i do hope you can get some answers.


Thank you pettals! Really appreciated the response. I'm in the Shropshire area and am currently being passed from pillar to post as no-one seems to have any answers for me- it's even been suggested my symptoms are a result of drug abuse (I have never touched anything aside from what has been prescribed to me) or a mental illness (no history of within the family, educated to a high level etc)! I've been told I should hear from the Neuro hospital in Birmingham (which is apparently pretty amazing) within the next 2 months but I'm pestering them most days for a cancellation. If I get no answers there I will be asking to be referred to the Russel Square London hospital - I've never heard of it so thank you so much for your response.

Best wishes x


you are welcome, i had not heard of it but my friend diagnosed me with p.o.t.s. so i asked to see prof mathias there- i dodnt see him but i sw a doc in his clinic and yes he thinks its possible, i have been fobbed off everywher to and suffered hell and i am tough but fucking heck i have sufferd and dr dingle is the only one who hasnt fobbed me off. so you stick at it- they dont understand and dont know so shove it back on th epoor patient . keep me informed ok.


You may also like...