View Full Version : Feeling Hopeless and alone, again...
Hi everyone,
Lately I have really been trying to just believe the neurologists... and get over this horrible fear of ALS. But i just feel like my symptoms won't let me. The constant twitching in my hand is what really scares me. I will be trying to read a book and a finger will just start twitching. I feel like this hand is not as coordinated when typing, I tend to keep using my left hand to do everything, which is really scaring me. On top of all of this, this is the hand that I have the weird lines in. I know people keep saying the lines are normal, but I don't think that they have always been there.... I would have noticed them, when I first began fearing ALS because I remember reading something on an ALS forum about a women's hands looking as if she has been soaking in water for days. Although, i'm not sure this meets the description of what my fingers look like. The wrinkles seem to be getting worse and worse.
I don't know where to turn, my doctor makes me feel ashamed every time I visit. My dad is a hypochondriac and my doctor knows I also suffer from OCD and anxiety and therefore I feel as if he has labelled me as a crazy person who never REALLY has anything wrong.
I want to talk to my doctor about the lines, and get some reassurance, but I am afraid to...
I feel lost and alone, I know I must be frustrating everyone just like I frustrate my boyfriend and my family.
Thank you for listening to this rant...
Any support would be really appreciated, I feel so depressed and hopeless.
:hugs:
yours,
Lilly
You are not frustrating me, but if you keep thinking ALS you are going to miss what it really is. Have you looked for anything else? Or can you not? You have to you know.
Hi Davit,
I don't know what else to look for, I have been trying to look for other possibilities trust me. I don't know if carpel tunnel causes finger twitching... but the twitching is in the hand which I have been diagnosed with carpel tunnel in.
As for the lines I know they could be linked to adrenal fatigue, which is caused by stress, I just wish the weird lines would move into my other hand if they are infact from adrenal fatigue.
Have you had a nerve/muscle test? EMG I think it is..
If you have and that's come back normal - not likely to be ALS.
Have you considered PNH? Peripheral Nerve Hyperexcitability? I've had the nerve test and diagnosed with issues but after further tests decided it was benign. Can chat more if need be. But those lines really are normal in my opinion.
---------- Post added at 20:17 ---------- Previous post was at 20:14 ----------
I imagine carpal tunnel will cause twitching as well as pain and tingling..
Hi Trueman,
I had two nerve conduction tests, but the 2 neurologists I have been to never mentioned the EMG as necessary. I didn't ask for it because, I thought it might cause me more stress and anxiety especially if I got some scary result. Also I have been told that if my physical exam is basically normal I don't need an EMG to rule out ALS. Although now that we are talking about it, I wish I got one.
Hi Trueman,
I had two nerve conduction tests, but the 2 neurologists I have been to never mentioned the EMG as necessary. I didn't ask for it because, I thought it might cause me more stress and anxiety especially if I got some scary result. Also I have been told that if my physical exam is basically normal I don't need an EMG to rule out ALS. Although now that we are talking about it, I wish I got one.
You have to get ALS out of your head. It's one that a lot with HA fear. I've been there. Just tell it to shove off!
Is the twitching only in your hand and the same hand as the carpal tunnel? If so it is highly likely to do with that..
Hi Trueman,
the twitching is pretty much everywhere... I noticed it first when my leg was just jolting out -out of no where.. then came those weird rippling twitches... then a thumper in my arms - now its in my fingers on the carpel tunnel hand. And the stupid LINES - they seem to be getting more prominent... as I said though I can't find very much evidence to connect the lines to ALS- PHEW. Yes, I know... I need to get it out of my head,.. but it is hard. Especially when I read stories saying oh, the neuro said I had BFS and then a year later I was diagnosed with ALS. Its so scary.
Well I was diagnosed with BFS which is PNH and I haven't got ALS three years later!
I have twitching all over just like you.. Ripples and thumpers. I've learned to live with it. Sometimes it fades enough to forget about it a week or so or at least go 'oh their goes my twitches' and laugh. Other days it's flipping severely annoying and can trigger my HA. I still think it might be linked to something maybe an auto immune issue and GP keeps and eye on these things. Presently got a potential thyroid issue. But you know.. And I can hear it in your posts.. ALS is highly unlikely. Go about your day without thinking about it for a week or two. No disaster will come from you just trying to forget about it for a bit and then see how you feel.
Hi Trueman you are very right.
I have also learned not to hang out around the BFS website.. it is safer here.
Did you have any tummy bug before the onset of twitching... I had colitis ( but a viral form...) and then a month later the twitching began. I have read this of others as well. I guess any answer would give me relief. I know I need to just forget it ... its just hard because I can feel the stupid twitches.
Actually I swear my PNH started straight after sedation for a colonoscopy! Never had a problem until a few days after that. Reckon it could have damaged muscles or triggered something...
---------- Post added at 21:24 ---------- Previous post was at 21:23 ----------
Just seen your post.. Ha ha great minds. Maybe there is something in that too...
---------- Post added at 21:27 ---------- Previous post was at 21:24 ----------
Btw I think I've had about 50 twitches in the time I've sat here posting to you :ohmy:
Hiya Lilly,
I'm sorry you're still fearful of ALS. As you know, twitching starts after atrophy and weakness and is localised.
Your hand feels uncoordinated simply because you're focusing on it- I promise :)
I get twitching, too. At the moment, if I do anything that involves closing/clenching or gripping with my right hand, my fingers start to twitch and spasm when I straighten my hand out. Weird! So, you're not alone in having weird symptoms like that.
I know that won't help you too much but you need to do your best to believe the neuro.
Take care :flowers:
Hi Trueman,
That is very interesting mine happened about a month following my colonscopy. Did you have stomach issues before your coloncoscopy? I wish my doctor would put more effort into finding an answer to why this is happening but.. I guess if it isn't ruining my life they aren't going to waste their time.
Hey Emily,
I am trying allot harder to feel better lately... its like everyday is a new symptom though. Lately I have been having trouble breathing- it feels like my neck is tight? I'm assuming it is anxiety as it is off and on, and I can still breathe and swallow. Have you had this?
Weird about your hand, twitching is so weird.. mine was always happening to my right hand, now it seems to have dissipated a little... for now.. haha
xx
Thank you for all of your replies, you have helped me feel better :bighug1:
Right well my minds made up! Twitching after colonoscopy! It's the sedation used? I had the gas and then decided for sedation as it was too painful ha ha but I swear they overdosed the sedation or the two don't work together well. No twitching issues until maybe 4-5days after this.. Did you get gas as well as sedation?
Yes I was having various issues (no bleeding) just cramping nausea and swings roundabouts with stool. So could have been a virus beforehand?
Hi Trueman ( ps. a good name- great movie- if that is what you referencing.)
I have no clue... I just had some drug administered through a intravenous which made me dopey- out of it.. haha, vegetable like. It wasn't a bad procedure was happy to hear I didn't have colon cancer- I HAD BLOOD in my stools so that was my last fatal health anxiety phase. haha
I had colitus, and horrible diarhea, constipation, stomach pain - the colitis was viral cause it hasn't come back says my gastro...
hmmmmmmmmm i wonder if this is connected.
I had a very similar thing going on and also thought: OMG, ALS! But then it went on its own. Actually, ALS is quite a rare thing, but now with all the media attention we've got some more food for ol'health anx.
Hi Majdle,
I actually never looked into the ice bucket challenge- serves me right I guess.. now I am learning lots because of stupid twitching haha! All I had to do was google twitching and up popped ALS! ugh. What is your twitching story?
See my twitching has never gone since the colonoscopy. Better days but never goes. So I believe it is seperate to the HA and obviously diagnosed by the tests.
But it's never got worse either! So it's just there all the time.
I do believe my muscle spasms are pains are caused by it a little - surely your muscles get s bit fed up of pinging like pong ball all the time..
I have a finger twitch lol. It screws up so many of my games. That is about the only time I notice it. I have an advantage though since I'm old these things are normal. You know there are a hundred forms of arthritis. Some are soft tissue. I'd look there first. It can hit any age.
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