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notsureanymore
19-05-21, 13:03
hi all I'm really not sure how to start this or even how to word it properly i feel like saying or even writing it makes me feel like I'm a crazy person to some extent but ill try I'm 30 year old male living in Australia originally from England and I'm not sure what's wrong with me or even if there is something wrong with me. I feel anxious I'm scared to fall asleep and wake up and there is something wrong with me/stopped working. I keep checking my reflexes do calf and heel raises I'm hyper aware of my body checking for dents and atrophy.

So ill start with what's wrong with me I keep twitching whole body twitches but most of the time its my left calf that twitches and sometimes my left arm/hand i also have a dent on the top of my hand the back of my hand right bellow the middle finger knuckle and my veins are a lot more pronounced on my left hand compared to my right I'm honestly terrified I have ALS also known as MND i dont have any weakness i feel like i can do everything sometimes i twitch and shake and there has been this sporadic pain sometimes in my calf or arm or hand on either sides though

so i went to my general doctor here didn't help i went to him with the my twitching and explained how its keeping me up at night at first i thought nothing of it and then he goes it may be something like MND so ill send you to a neurologist and of course from there I super freaked out and thought the worse am I going to wither away and die and all that. so I had my neuro appointment on the 13th of may it came i saw him i did the neuro reflex tests i did the Hoffman and Babinski test and the general strength tests and everything was good normal nothing showing or to be indicated MND he said to me I don't think you have it but if you like in 6 weeks time we can do an EMG its the gold star of tests for checking so i agreed and now i have to wait for better or worse but until then i keep having this sense of dread and fear the twitching pain/cramps that affect me and it really affects me.

thanks for letting me type here and air out my thoughts and fears its hard for me to talk to people i don't wanna come across as a crazy person i do make this promise though to myself and others that i will make sure once i have my EMG tests done and everything that i will let everyone know what the results are. much love to you all

pav1984
23-05-21, 21:39
I'm sorry you are feeling bad and I dont think you are crazy at all. I dont know how to help you other than offer you some thoughts from what you said. I just didn't want you to go without a response.

What your general doctor said would upset anyone.

Your neurologist offered you choice to have the test. I may be wrong but if they were concerned I dont think you would have that sort of choice.

I hope this helps. I hope your test results come back saying you are well.

notsureanymore
24-05-21, 04:33
hi thanks for the reply I'll be honest I've been really freaking these last couple of days and assuming the worst I'm going to die from this and its been affecting everything i wake up and its just there the thought i know its all clinical weakness and all that and I've read 1000's of forum posts on the whole alsforums (never posted though thought about it but I'm scared they will turn around be like you have it or feel like I'm taking away from them when i know its there to help people with ALS/MND) in a lot of ways im a wreck and its hard to tell people why i feel like this

Jess5566
26-05-21, 22:34
I’ve had many symptoms which made me believe I could have ALS.

twitches all over
messing up my sentences, using the wrong words etc...
balance problems, also feeling like I can’t walk on my left leg
weakness in face & tongue
swallowing difficulties
my left hand doesn’t feel normal, I find it really hard to use it.

MANY many more, but I will be here all day:), my point is I’ve been to my GP several times and they refuse to send me to a neurologist, they do the basic neuro exam and they say everything is fine. Some of my symptoms have been with me for over a year and some are new, but I rationalise with myself that if it was ALS I would probably be in a much worse of position right now, and certainly wouldn’t be typing this.

All the best!:)

notsureanymore
27-05-21, 08:34
thanks for replying and your right i know its insane to think i have this incurable disease and that someone at my age to have it is even rarer but its something I don't know how to let go i guess the good news is i have been pushed forward due to a cancelation at the neurologists so my booking is now tomorrow which is good i guess but I'm not sure i feel excited but even more nervous now but i do promise ill be here let everyone know the results if they are good or bad so wish me luck and all the best

Jess5566
27-05-21, 13:44
Wishing you the best for your appointment!, I’m sure you will be ok!

I’m only 24 and I’ve been convinced for a year I have als, so I know exactly how you’re feeling!
Please do let us know how it went!:)

notsureanymore
28-05-21, 08:23
Hey all! so had my appointment today not gonna lie i was freaking out something bad and i truly thought the worse the whole experience seemed foreign the electric jolts the needles and one point he even drew on me with texta to check and confirm everything he ran through a battery of tests and honestly he said everything was perfectly fine that there is no signs of MND or any nerve damage whatsoever i had as he called it a perfect response to everything and that there isn't anything that would make him think that there was nerve damage to my arm or legs he said it mostly likely from a pinched nerve in my neck but that's it and honestly just hearing that after freaking out was such a huge relief i feel like such a huge fool but tonight when i go to sleep i know i can sleep better i hope everyone on here take the time listen to there doctors cause they are professionals and know what they are talking about.

also in regards to the twitching it didn't show up on the EMG but he did say some people just twitch but it means nothing at all most of the time it truly means nothing but now that i know im a lot more at peace now. i hope everyone else the best when it comes to this i know im not out of the woods i know i still have my anxiety but i plan to use this a platform to making a step forward and making myself feel and being better thanks all who commented and read through this much love to you all truly xx

Jess5566
28-05-21, 10:49
That’s great news!, it’s insane what we can actually make ourselves believe!

But I’m glad you got the all clear and you can now kick that fear away!

All the best!x

jojo2316
28-05-21, 17:17
Great news and I am so so glad you are feeling better. I think your go scared you unnecessarily at the beginning of this journey. I am currently having MND worries too.... it is a rabbit hole I have been down several times before and once it got so bad I visited a neurologist who said that, in her entire career, no one who presented to her with twitching as their main symptom had MND (and she saw a lot of twitchers). This was a great comfort at the time.

notsureanymore
02-06-21, 17:36
thanks for the responses guys ive had some good days but these last couples of days have been bad i keep thinking the worst..... like why didnt he test my calf/leg when that was where the problems started did i get my EMG to early.... i know im going in circles and its hard but i just keep thinking these things

Speranza
02-06-21, 22:34
Glad it was all ok. I wonder why we fixate on MND?
My dad actually had it. It was VERY obvious. All the symptoms you describe CAN be anxiety, as I'm sure you know. Sounds like that's what it is.
I hope you manage to hang onto the reassurance, it was great that you got checked out so thoroughly.

notsureanymore
04-06-21, 08:01
hi thanks for replying your right i know its insane to think that i have this incurable disease that's going to slowly kill me but for some weird reason i just cant get it out of my mind i really wish i could :( i have so many questions and fears still i just got to hold onto the fact that im a generally healthy 30 year old so its not something that should affect me