als/mnd symtoms been ignored by doctors

Posted , 4 users are following.

i fear the doctor are not taking me serioue becaue im young .

my shoulder will lock randomly and i will not be able to move my neck from one side to the other it locks into place .

this year has been really strange i started experiencing a weird thing where as i was asleep my body would lock up and i could not move or breathe in my sleep i looked it up and found sleep paralyzation but that was when people was awake anyways i started getting pains all over and my muscles would just lock up randomly .

again i thought nothing of it i started having a shortness of breath in feb 2014 and was concerned also i started reguratation after eating also this comes one day is ok the next then back again been doing it for 10 months now my throat muscle will lock up (where my tonsils and that dangly thing is )

i then in october started with a breathing problem like prolonged holding breath i wasnt doing it on purpose and its become scary and also involatary intake of breaths .

i then have started having shoulder pain ever day that feels heavy weight is on it my fingers seem to lock up alot .

i also realised when i go to toilet my muscle is not working properly i cant strain sorry for tmi but i just cant its like im too weak .

my chest also gets this restriction feeling of it just not working properly .

my legs are weak when i walk and one always feels its dragging .

im having muscle fasculations everywhere even when i smile my cheek will be doing one i get them in my lips my feet my legs my chest my stomach my neck head ect you name it i have them there and its embarssing because you can see them .

i woke up this morning early hours half asleep my leg fully dead to the point i could hardly drag it ,it was so weak i could not lift it up i had this also with my neck a couple of years back when the facsclnations started but i never thought anything of it i had to drag my body (head still on bed ) to the bottom of my bed to acually get out and lift my neck/head with my hands upwards or it would be so painful and flop like it had snapped .

my face will go tight and like lock all of a sudden and my legs feel so weak and like jelly all my muscles in my legs are now soft and jelly like even though they was big and hard before everyone keeps saying how skinny i am and getting more skinnier but i belive its my muscle going and thats why i look this way .

im getting headaches alot more and i also slur my words alot and people ask me what im saying or laugh at me because it comes out so slurred and wrong .i also then can not think of what im saying it goes completly like all the time i will even come out with a new conversation that has nothing to do with anything anybody has been talking about and i dont realise im doing it .

at first i thought i was getting alzhemiers or something and arrythritus but as times going on and its getting worse i feel its als /mnd and i fear im going to be undiagnoised and not helped .


1 like, 6 replies

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6 Replies

  • Posted

    iam 43 but from age 21 onwards i had these symptoms also especially the sleep paraylisis i would wake up and could not move as though i was in a block of concrete,the legs would go weak during day this continued all through my 20s but i was young and thought nothing of it,in my 30s it continued along with severe dizziness and nausea i went doctors for many years in my 30s and my GP finally told me stop making appopintments as it was all in my head,age 38 i come home from work go bed wake up day after and iam paraysled completley from waist down could not move legs took to hospital spent 5 months in there in wheelchair and was finally diagnosed with devics disease i was happy because at last i had found answers,if your GP doesnt take you serious see a neurologist iam sure you will get answers good luck
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    • Posted

      so sorry to hear that but glad your mind was put at rest you know when somethings wrong im sick of been over looked the thing is i have to go through my doctor to see a neuro so its a no win situation thankyou for your reply 
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  • Posted


    Please go to Docs as it's better to be safe than sorry xx

    At least they can put your mind at ease.. Good luck

    Win xx  scarey I guess?, good luck xx

    xx xx

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  • Posted

    Hey steph, I have the exact same symptoms as you and im 17, I don't want to worry you or anything but I feel as if I should tell you my story, I live in California and my symptoms started during my senior year of hs, well after they started I went online and looked up diseases that could cause these symptoms bad idea BTW anyways stumbled onto als, told my docs that I thought I had it and they tried to convince me I was wrong I did not believe them I even saw an Als specialist who did reflex tests and strength tests and told me there was no way you had als anyways I went into severe depression about it, my parents intervened and we took a family trip to India one of the best vacations of my young life. Anyways on this vacation I saw a neuro and a psychiatrist, the neuro at first told me no way you have als but sent me for an emg and nvc to put my mind at rest. Anyways the neuro who performed these tests specialized in mg he said he would describe the emg as borderline normal because he found a fib in my face and wrist but normal motor units and nothing els in my other limbs anyways he tried to convince me that the fibs could be due to a number of reasons first of all I haven't done any physical activity for a while and I stopped eating at school for 3 months so 8 hour time spans anyways went back to the neuro who sent me for the test and after looking at the tests he said we'll check up in 6 months I asked him if it was als and he said "it could be" well those words sent me back into a depressive like state my parents immidietly intervened again and sent me to my psychiatrist that very night the psychiatrist called up the neuro and asked him why he thought I could have als, the neuro told my very cool psychiatrist that because I'm a foreigner he's afraid I'll sue him if I do turn out to have als(which is a miniscule probability and the neuro also told my psychatrist that if he lived here I would have told him no als) so he was basically covering his ass and I can't blame him for that, but anyways I was assured by my psychatrist that all of this was caused by anxiety/depression/and lack of exercise and a good diet/ I was also assured by the neuro who did the emg that's what he thinks it is. Anyways here I am back in california feeling a lot better got my energy back I exercise frequently and I feel a lot better. On the flight back here my left hand fell asleep and felt very numb and weak but quickly went back to it's normal state anyways, my muscles look a bit better and as for my speech no one els notices it but its a bit slurred but I see improvement anyways bro take it from me live life to the fullest and just enjoy and do what you wanna do. I'm currently getting back into my education and pursuing a career in the medical field.
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    • Posted

      That's amazing although I got a little confused do you not have als ? Lol sorry sound really thick here but as I have anxiety and depression it's what it does to you .

      Funny enough your like saving me here as tonight the fear has returned and I'm booking that appointment tommorow I'm from UK so nhs waiting or even trying to see a neuro will be a fight with my doctor

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    • Posted

      Um well I wish I knew the answer to that question my self lol, I have a follow up within a year to see how I'm doing as for now I'm strong as a bull I guess lol. But all the docs are telling me I don't have it, but you know only time will tell. Anyways good luck with your doc man, keep me posted. Oh and how old are you by the way?
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