Things that you do not hear about ALS

[Dgnk]

This thread has been so helpful, thanks to everyone. I have lots of these “extra” symptoms, and as I sit my aching backside on a heating pad and take way too much Advil, and ask my husband if he smells smoke, and wonder if my new glasses just got damaged, I’ve been thinking that i must just be a much more anxious person than I ever thought. You give me faith that I’m not a hypochondriacal nut job.

Also have been getting those strange migraine auras, no pain with these, just a shiny diamond moving across my field of vision for about half an hour, related perhaps? And the one freezing cold foot and leg, attached to a normal body temp body.

Recently there was a thread on cbd oil, sounded worth trying. I bought the smallest charlottes web product, didn’t feel it did much, and then read somewhere that there’s a difference between hemp oil and cbd oil. Do I need a prescription for the stuff that works?

 

[Now stay at home dad]

What a great thread!
Ok my friends, How about all the mouth problems?
Jaw clenching, chattering teeth, biting toungue/ cheek daily? And oh the nightmare dental visits?
If I go out at night and it is cold, my jaw clenches so hard it is painful!
No one told me about that..........

oh how I hate the jaw clenching. Ask your doctor about Baclofen. Some doctors have different opinions about it but it has really helped with my jaw loosening up.

 

[Statius@]

Interesting thread. Something I don't recall reading about is eye sensitivity--not vision issues per se but eyes that feel sensitive to air or bright light (on a screen, e.g.). My eye doctor diagnosed it as dry eye and prescribed Restasis which has helped though not fully eliminated the problem (thank heavens the VA is paying for it). He said he found something in the scientific literature about ALS patients blinking less thereby causing dryness, but the docs at the ALS clinic dismissed this, thinking my dry eyes were unrelated. I found an old thread here about a similar phenomenon, but haven't done an exhaustive search. The sad thing about reading old threads is that nearly all the people commenting are no longer around--which shouldn't surprise me of course.

Ed

 

[KimT]

Also, some of the meds we take can cause dry eyes and dry everything. Remeron does it to me. I haven't worn my contacts in two years because of my shaky hands and dry eyes.

 

[notBrad]

Prior to ALS I didn't have a gag reflex (can't wait to hear the comments on this one.) Now I have one but it is very slight. I also don't have a reflex in my left ankle, where this all started but very brisk reflexes everywhere else.

This post reads like it's coming from a crazy person.

Between this and the post in the "Help me find a bra " thread, you sound like you have a great sense of humor! Glad you haven't lost it.


I have a bonus from als, sorry if I offend anyone, it seems one side effect I have is... Um... I now have the ability to have multiple orgasms. Surprised the hell out of the wife first time it happened, seriously. So not all bad...

 

[KarenNWendyn]

Brad — maybe that’s a side effect of your RCH4.

 

[GregK]

Brad — maybe that’s a side effect of your RCH4

hmmmm...you might be on to something there! ;-)

New market! No lack of funding for limp noodles!

 

[ShiftKicker]

Brad, that's kind of wonderful. I'm not sure if it balances anything, but that could be considered a consolation prize?

 

[notBrad]

Brad — maybe that’s a side effect of your RCH4.

Maybe you're on to something... I will report back, that ought to put an end to those pesky financial issues.

but seriously, I have to leave you all, the MMJ Is kicking in and Airplane! Is on!

" the hospital, what is it?
It's a big building where they take sick people, but that's not important now"

 

[Jlynn]

Thanks for sharing your expieriences Pete. I think it's important to share here. My brothers docs would tell him there was no pain with ALS yet he suffered with the cramping as well. His fingers would painfully curl and lock up and he would have to physically try to straighten them. Stomach and neck as well. As far as the mental aspect? I remember even thinking about what must be going on in his mind would make me cry. One can only imagine unless you've been there. Again, thanks for sharing.

 

[tripete]

On the mental side I wrote a short story called "The Cage" that I posted here back on 11/23/2016 that was my attempt to describe some of the mental and physical pain; https://www.alsforums.com/forum/general-discussion-about-als-mnd/36580-cage-short-story.html

 

[Nuts]

It is threads like this that have kept me, at least mentally, ahead of the curve with this beast. Reading this one reminds me of the importance of sharing, even when all I want to do is withdrawal.

Brad and Mark, as always, you make me laugh.

Becky

 

[mpnatx]

A couple of other changes I've noticed with me is that I get startled very easily. If someone puts their cup down, I jump. And, I can't watch scary horror movies anymore. Now I look for comedies!

Brad, If that's a side effect of something, I'll have some!

 

[tripete]

I needed to delete

 

[ShiftKicker]

Sorry Pete- it went to moderation for some reason- everyone should be able to see it now.