munecagirl22
Active member
- Joined
- Jun 1, 2011
- Messages
- 51
- Reason
- Learn about ALS
- Country
- US
- State
- sc
- City
- greenville
i just have to vent, there is no where else really i can vent. I know there are many on here without and with a diagnosis of ALS/MND or something along these lines, or have been in my shoes.
I have been trying to be soo positive and stay so strong, but it always gets me down i do tell my hubbie ,but its hard for him to hear things, he already is seeing what i deal with. I know that many think i do not have ALS bc i have no actual physical loss in strength, but what about the other people who startd showing symtems years (2-5) before ever getting an diagnosed or even going to the drs just for simple, tripping or balance issues? or who have had issues and have numerous emgs and they were clean so they got the blow over or just bc of age and gender?. obvious they are lucky and have super slow progression. (well lucky is no such word uck)
I have anixety ofcourse over my issues as wouldnt anyone? and they gave me effoxer and klompians. i DO NOT have issues sleeping and they just make me loopy drugd up which i hate. They do not help at all and ive tried other depressin meds since my issues startd ,but nothing helps much i guess bc noone is getting down to the issue, (iam just not actually depressed w a chemical imbalance so meds wont work) and iam just so scared for my future and i hate takeing it out on my loved ones and iam putting off my life bc iam so scared, its so so horribe to feel this way.
I hate nights, when i think i can relax and then as soon as i lay there i feel the twitching so much more then when iam not relaxed. I hate how i think 'oh its going to be better the next day' and i get up and feel so bad, so tired after doing nothing and my legs are weak, and i have all these tremours, then i give myself a "talkin to" and i trip, and stand there and my quad muscles are just flexing from my balance issues, and how i cant wear my cute flip flops or go barefoot bc i trip even more, and when i trip i see my foot (always right?) go behind me out to the side it looks odd, I hate how i cant walk just one day without this, and why now iam haveing so much balance issues all i have to do is stand there and i sway. I hate how i can not be and feel normal anymore, and drs just say its a chem imbalance maybe?. I was never like this before
I hate how they dont take into count its something else bc iam not skinny, ive had period issues since i was 17,, thats almost 10 years and now all of a sudden neuro issues, are just catching up with me?. I hate how i feel soo badly like i do have als or mnd and nothing helps me feel that i dont, BUT the crazy thing is i also feel 'oh everyone is right i dont have it, these issues are just simple bc i still have strength after 6months', i mean 6months is a long time? iam sure i would have lost strength by now?
I hate when i see other post on here or other sites, and people have issues just like me or similar stories and DO YET HAVE IT. and i hate how some people that is just how it is and how it will always be everyones body is so so differnt, oh how i hate my calves and quads twitch so much, and the spacticity at night i never ever used to have ( that thing where ur body just jumps, when ur relaxed).
I hate this horrible diease and how it effects ANYONE in this world, its just oh so unfair. BUT THERE IS NOTHING i can DO. i know there are things i can do ,but i just want to take it all away from everyone dealing with it, it saddens me oh so deeply, rather i have this or not its impacted my EVERYDAY life for the rest of my life.
I know that i shouldnt look at sites at all or others, but i just happen to type a symtom in google (not twitching ) .. and another fourm alstdi came about, what a stressor,, wow,,, makes you seriously think some neuros are quacks (as suspected) some are good and do care but ive yet to find any ,but ive only seen 2.
i know know one is a dr a neuro and only can give advice on there own personal experiences o others they have read or heard of , and that i have to understand and resepct, its always nice to hear others oopinions , but noone should rely soley on that.. pretty much time will tell which sometimes does truley suck!
well thanks for listening all to me venting and no OFFENSE to any. This is why i put on this part of als support fourms bc maybe and some do and can relate to how i feel without getting mad at me .. peace, hope, and my prayers to each and everyone.
I have been trying to be soo positive and stay so strong, but it always gets me down i do tell my hubbie ,but its hard for him to hear things, he already is seeing what i deal with. I know that many think i do not have ALS bc i have no actual physical loss in strength, but what about the other people who startd showing symtems years (2-5) before ever getting an diagnosed or even going to the drs just for simple, tripping or balance issues? or who have had issues and have numerous emgs and they were clean so they got the blow over or just bc of age and gender?. obvious they are lucky and have super slow progression. (well lucky is no such word uck)
I have anixety ofcourse over my issues as wouldnt anyone? and they gave me effoxer and klompians. i DO NOT have issues sleeping and they just make me loopy drugd up which i hate. They do not help at all and ive tried other depressin meds since my issues startd ,but nothing helps much i guess bc noone is getting down to the issue, (iam just not actually depressed w a chemical imbalance so meds wont work) and iam just so scared for my future and i hate takeing it out on my loved ones and iam putting off my life bc iam so scared, its so so horribe to feel this way.
I hate nights, when i think i can relax and then as soon as i lay there i feel the twitching so much more then when iam not relaxed. I hate how i think 'oh its going to be better the next day' and i get up and feel so bad, so tired after doing nothing and my legs are weak, and i have all these tremours, then i give myself a "talkin to" and i trip, and stand there and my quad muscles are just flexing from my balance issues, and how i cant wear my cute flip flops or go barefoot bc i trip even more, and when i trip i see my foot (always right?) go behind me out to the side it looks odd, I hate how i cant walk just one day without this, and why now iam haveing so much balance issues all i have to do is stand there and i sway. I hate how i can not be and feel normal anymore, and drs just say its a chem imbalance maybe?. I was never like this before
I hate how they dont take into count its something else bc iam not skinny, ive had period issues since i was 17,, thats almost 10 years and now all of a sudden neuro issues, are just catching up with me?. I hate how i feel soo badly like i do have als or mnd and nothing helps me feel that i dont, BUT the crazy thing is i also feel 'oh everyone is right i dont have it, these issues are just simple bc i still have strength after 6months', i mean 6months is a long time? iam sure i would have lost strength by now?
I hate when i see other post on here or other sites, and people have issues just like me or similar stories and DO YET HAVE IT. and i hate how some people that is just how it is and how it will always be everyones body is so so differnt, oh how i hate my calves and quads twitch so much, and the spacticity at night i never ever used to have ( that thing where ur body just jumps, when ur relaxed).
I hate this horrible diease and how it effects ANYONE in this world, its just oh so unfair. BUT THERE IS NOTHING i can DO. i know there are things i can do ,but i just want to take it all away from everyone dealing with it, it saddens me oh so deeply, rather i have this or not its impacted my EVERYDAY life for the rest of my life.
I know that i shouldnt look at sites at all or others, but i just happen to type a symtom in google (not twitching ) .. and another fourm alstdi came about, what a stressor,, wow,,, makes you seriously think some neuros are quacks (as suspected) some are good and do care but ive yet to find any ,but ive only seen 2.
i know know one is a dr a neuro and only can give advice on there own personal experiences o others they have read or heard of , and that i have to understand and resepct, its always nice to hear others oopinions , but noone should rely soley on that.. pretty much time will tell which sometimes does truley suck!
well thanks for listening all to me venting and no OFFENSE to any. This is why i put on this part of als support fourms bc maybe and some do and can relate to how i feel without getting mad at me .. peace, hope, and my prayers to each and everyone.