Dizziness and ALS

[jethro]

i came to doctor because of dizziness which started 20 years ago and it reached culmination when i visited neurologyst in 2015. he looked me and sent to psychiatryst (suspicious BIP after dialogue). visited another one looking for second thought, he also sent me to psychiatrist. i did all the things at that time including emng, everything was ok, but dizziness still exists. third one said in 09/2017 you have ALS. still looking for cause of my dizziness. phisically i was full ok all those years, until i got third thought of neurologyst. third neurologyst made emng, liquor tap, blood exam, metals etc... emng was disaster, along with clinical facts. right tenar disappeared, right foot drop, toes curled etc.
maybe i shouldnt search for a third thought?
No kidding, but:
how often dizziness goes with ALS? Dizziness started after car accident in 1997 so i got antiepileptic drugs which i didnt use. Never had epilepsy. can not believe that dizziness which started after very bad brain injury 21 years ago has anything common with ALS. diiziness that i have now throws me to horizontal position immediately after i jump out of bed. i thought it is cause of anterior and posterior muscles, calf etc, but it is not.
Now i am sure that ALS emerged when i was looking for a cause of my (still) unknown disease.

 

[KimT]

I also started experience dizziness about 20 years ago. They did an ENG (different than an EMG) and found I had damage to both vestibular nerves. I was diagnosed with Meniere's disease but I never lost my hearing. My current neuro thinks it is a combination of damaged vestibular damage, a dislocated TMJ, and cervicogenic vertigo. I gave up trying to find out what it was and just made sure I didn't overuse my neck.

I'm a little dizzy every day and some days I am very dizzy. Not a good combination with ALS.

I got so frustrated with it I went to University of Pittsburgh Balance Clinic and say an expert in dizziness (2005.) Back then I was running and had very good balance. Just dizzy. It also felt like my head was going to explode with pressure. He said it was likely a combination of issues, including migraine.

I think strain on the neck can cause dizziness so maybe there is a higher incidence of dizziness in ALS population simply because the neck gets weak. Nobody really knows.

 

[jethro]

therapist said that it may be cause of high concentration to balance the body, and that may be the reason why it makes me tired beside als. maybe it is now like that, but jesus, it started 20 years ago when i was just like acrobate. after few months my blood in brain resorbed, so everything was ok. i had SAH trauma, lateralization (right side, which is first affected by ALS), i was blind etcetc...
we have same problem, but different source of issues...