I have been reading these DIHALS posts for over a year now.
I have learned - widespread twitching is not a first symptom of ALS. (Mine started 4/11.)
I have learned - get an EMG. If it is clean - no ALS. (I had a clean EMG about 8 months ago.)
I have learned - ALS symptoms don't come and go. (My twitching comes and goes but is usually present in some form or another. Currently a huge increase in twitching...)
I have learned - about BFS (But maybe not enough? My new PCP said he read a report that GERD meds can cause this?)
I have learned - perceived weakness means nothing. (Mine in left hand, arm, foot and leg have gotten worse in last month.)
I have learned - anxiety is not anyone's friend. (I have never been diagnosed with anxiety though obviously have it to some degree.)
I have learned - work with PCP on diagnosis, not Dr. G or ALSForum folks. (No offense - I clearly have learned a lot from you.)
Guess I'm struggling to follow what I've learned because it's been over a year and the perceived weakness and increase in twitching have brought back fear.
I had a clean MRI.
I have been told I have Hashimoto's Thyroiditis and am on a very low dose of Synthroid.
I had a Lyme Literate CRNP tell me after a test that I had a questionable Bartonella (Lyme co-infection) result, but not a positive Lyme result. I also had an MD tell me to disregard those tests.
I have recently discovered a mold problem in my house (working on clean up).
So, my ALS forum friends, what say you - other than, "You already know you don't have ALS, so why are you bothering us?"
I guess my big question is: does it make sense to have another EMG?
Should I pursue the Bartonella? Could it be the thyroiditis? Could it be the mold? Was it the GERD meds?
I already hear the answer - "Could be any of those, but based on what you've said, it's not ALS. Work with your PCP."
I know, I know. Maybe at least someone else will learn something from my post.
I have learned - widespread twitching is not a first symptom of ALS. (Mine started 4/11.)
I have learned - get an EMG. If it is clean - no ALS. (I had a clean EMG about 8 months ago.)
I have learned - ALS symptoms don't come and go. (My twitching comes and goes but is usually present in some form or another. Currently a huge increase in twitching...)
I have learned - about BFS (But maybe not enough? My new PCP said he read a report that GERD meds can cause this?)
I have learned - perceived weakness means nothing. (Mine in left hand, arm, foot and leg have gotten worse in last month.)
I have learned - anxiety is not anyone's friend. (I have never been diagnosed with anxiety though obviously have it to some degree.)
I have learned - work with PCP on diagnosis, not Dr. G or ALSForum folks. (No offense - I clearly have learned a lot from you.)
Guess I'm struggling to follow what I've learned because it's been over a year and the perceived weakness and increase in twitching have brought back fear.
I had a clean MRI.
I have been told I have Hashimoto's Thyroiditis and am on a very low dose of Synthroid.
I had a Lyme Literate CRNP tell me after a test that I had a questionable Bartonella (Lyme co-infection) result, but not a positive Lyme result. I also had an MD tell me to disregard those tests.
I have recently discovered a mold problem in my house (working on clean up).
So, my ALS forum friends, what say you - other than, "You already know you don't have ALS, so why are you bothering us?"
I guess my big question is: does it make sense to have another EMG?
Should I pursue the Bartonella? Could it be the thyroiditis? Could it be the mold? Was it the GERD meds?
I already hear the answer - "Could be any of those, but based on what you've said, it's not ALS. Work with your PCP."
I know, I know. Maybe at least someone else will learn something from my post.