Still worried about ALS (possible trigger)

[LE]

I know I've posted already but I am still struggling with symptoms.

I know people have said there is no pain with ALS but I've also read where people diagnosed with it have said they did have pain.

My symptoms are:

*My left foot and leg is thinner than my right
*I can do the strength tests but my left foot is very sore the next day to walk on and generally is sore to walk on.
*This stiffness and pain has now progressed to my left hand.

Mouth symptoms
*I continue to keep biting my tongue when eating, talking and sleeping
*My tongue deviates to the right in my mouth and also when I tense it up and stick it out. When I stick it out flat it is doesn't deviate.
*When I'm gathering a spit for example when brushing my teeth the right side seems. It to work the same as it always did.
* It is asthough something is stuck at right side of throat
*I am also biting my cheeks when eating and sleeping and when I look in my mouth they look like they are 'caving' in.

I have an emg on Thursday and I don't see how it can be normal. The neurologist I have seen has said he believes it will be normal and that he is doing it to reassure me.

[Iker20]

Nothing you said is a classic ALS symptom except your leg being thinner, which is impossible to judge by yourself, how was your neurologic examination?

[Fishmanpa]

ALS is about "failure" not "feeling". I don't know what else anyone can say. You've had an experienced neurologist test you and you're clear. Then you come here to seek reassurance and argue back every logical point.

If you want to engage this fantasy, so be it :shrug: But please continue to take your meds and discuss this with your therapist as well as the reassurance seeking on the forum. I'm afraid it's doing more harm than good.

Positive thoughts

[LE]

Nothing you said is a classic ALS symptom except your leg being thinner, which is impossible to judge by yourself, how was your neurologic examination?

The neuro exam was in the neuro's words 'within normal limits' which freaks me out in itself.

---------- Post added at 17:45 ---------- Previous post was at 17:43 ----------


ALS is about "failure" not "feeling". I don't know what else anyone can say. You've had an experienced neurologist test you and you're clear. Then you come here to seek reassurance and argue back every logical point.

If you want to engage this fantasy, so be it :shrug: But please continue to take your meds and discuss this with your therapist as well as the reassurance seeking on the forum. I'm afraid it's doing more harm than good.

Positive thoughts


I know it is mainly about failure but like I said there have been people who have diagnosed who also had pain.

I know I'm exasperating everyone but these symptoms just won't go and I can't see how they are benign given they seem to be progressing now to my hand. Also if I can do the exercises but then the foot or hand hurts afterwards surely it a sogn it's weak.

[Fishmanpa]

The neuro exam was in the neuro's words 'within normal limits' which freaks me out in itself.

In all seriousness, what part of "within normal limits" freaks you out? I'm curious form the standpoint of how your mind sees this as bad :huh:

Positive thoughts

[LE]

In all seriousness, what part of "within normal limits" freaks you out? I'm curious form the standpoint of how your mind sees this as bad :huh:

Positive thoughts

Well I know my reflexes are brisk on my knees which he has said is common in people with anxiety and that's the cause of it.

So when he says within normal limits it makes me think there must be other things that are 'slightly' off as in not plum normal, not perfect. Open to interpretation etc. This is what makes thendoubt creep in.

[Fishmanpa]

So when he says within normal limits it makes me think there must be other things that are 'slightly off' as in not plum normal, not perfect. Open to interpretation etc. This is what makes then doubt creep in.

If for instance, "within normal limits" is somewhere between 1 and 10, that means ALL your results fell within this range and it's "normal". It doesn't matter if it's 1 or 10 either. It's still within "normal range".

Ok... LE... this is beyond irrational. You do know this right? If something were "slightly off" and it were of concern, he would have ordered additional testing or told you about it. What you're doing is akin to insisting a wall that's painted blue is actually red. No matter how you look at it, you're seeing the wrong color.

I do hope you find a way to overcome this. It's certainly overtaken your life in a negative way :(

Good luck to you and as always...

Positive thoughts

[Iker20]

Im in the same boat myself, have gone to a ALS specialist who told me she was 100% sure i didnt have it and that i didnt need an EMG, still worried, have been freaking out for almost 6 months now, I know that anything I try to say to reassure you wont matter, but really I am 100% sure you dont have als, its an extremely rare disease and your presentation would be too atypical, 90% of als cases start with drop foot, hand weakness or slurred speech, if you are younger the odds are even more in your favor, it is almost impossible for your problems to be ALS and yes, anxiety can be the cause of all your symptoms

[Josh1234]

So you have bulbar, hand and leg onset ALS all at once? They will put you in the medical history books!

[Colicab85]

If a neurologist tells you you don't have ALS then you don't have it.

I struggled for a long time understanding this but these people are there to find and help ppl that do. If they say you're fine then you are FINE.

Stop reading crap online. It is of no help.

[LE]

If for instance, "within normal limits" is somewhere between 1 and 10, that means ALL your results fell within this range and it's "normal". It doesn't matter if it's 1 or 10 either. It's still within "normal range".

Ok... LE... this is beyond irrational. You do know this right? If something were "slightly off" and it were of concern, he would have ordered additional testing or told you about it. What you're doing is akin to insisting a wall that's painted blue is actually red. No matter how you look at it, you're seeing the wrong color.

I do hope you find a way to overcome this. It's certainly overtaken your life in a negative way :(

Good luck to you and as always...

Positive thoughts

Thanks Fishmanpa

I do always value your advice. You have helped me over the past few years.

I'm trying so hard to believe it's not what I fear. I am hoping after the emg on thur that I can finally accept and move on. I just hope and pray it is normal or negative for ALS at least.

Believe it or not I am actually so much calmer than I was. The psychologist I have been seeing said to try and get to a place where I am able to 'sit with the tiger in the room'. Which is where I am at now. I still fear it but I have reduced the checking majorly and yes I've posted here the other day but hadn't posted since the last post a good couple of weekend ago. It's also so hard to distrust your own instincts when things are happening to you and you feel there is no explanation.

Thanks again.

---------- Post added at 17:53 ---------- Previous post was at 17:50 ----------


Im in the same boat myself, have gone to a ALS specialist who told me she was 100% sure i didnt have it and that i didnt need an EMG, still worried, have been freaking out for almost 6 months now, I know that anything I try to say to reassure you wont matter, but really I am 100% sure you dont have als, its an extremely rare disease and your presentation would be too atypical, 90% of als cases start with drop foot, hand weakness or slurred speech, if you are younger the odds are even more in your favor, it is almost impossible for your problems to be ALS and yes, anxiety can be the cause of all your symptoms

The problem is I think I have all three of these to some degree!!!!

---------- Post added at 17:54 ---------- Previous post was at 17:53 ----------


So you have bulbar, hand and leg onset ALS all at once? They will put you in the medical history books!


I know Josh, it's just so hard when you are going through it.

---------- Post added at 18:22 ---------- Previous post was at 17:54 ----------


If a neurologist tells you you don't have ALS then you don't have it.

I struggled for a long time understanding this but these people are there to find and help ppl that do. If they say you're fine then you are FINE.

Stop reading crap online. It is of no help.

Thanks. I know it sounds crazy. You are right it is of no help.