hezzera
New member
- Joined
- Oct 15, 2015
- Messages
- 8
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- Streamwood
Hello everyone, I hate to have to post again after so long. Please please hear me out before quickly giving me the boot.
I posted back in 2015 with some concerning symptoms I had been having since 2012. Muscle twitching, dizziness, perceived weakness, dexterity issues...
There were times over the past 7 years where all these symptoms seemed to disappear (besides some easy fatigue in hands when let’s say, spraying a water bottle) and a twitch here or there. 2012 was when all of this first hit. It faded about a year later and then came back in 2015 (this is when I made my last post).
It lasted maybe a good 6 months before fading for quite some time. June of 2019 is when the twitching ramped up again, my usual perceived weakness spots felt way worse than before, and the dexterity issues came back worse than before. Some issues have faded some...but my hand issues persist.
Now before I proceed, I saw one neurologist back in 2012 when this all started. He performed a brain MRI and an emg/ncs and couldn’t find more than mild carpal tunnel.
I haven’t seen a neurologist since then because like I stated, these symptoms seem to subside for a good amount of time where I gladly tried to move on with life and forget about it completely.
I’m very aware that ALS does not “come and go” and always tried to tell myself I must be dealing with BFS and this is just how it is. I was always able to rationalize that I don’t have any functional failure so I need to stop assuming ALS.
What has me concerned is my hands. I’ve had on and off dexterity issues since this started back in 2012, but it only lasted a day to a couple months. This now has been an issue since June of 2019 and what I can’t get past is my thumbs. What I’ve noticed is causing my “clumsiness” the most is my thumbs joints caving in. On both hands. If you’re familiar with Froments sign or Jeannes sign, both of my thumbs do this now. This was never an issue before and it’s definitely not something I can pass off as perceived. It effects my pinch grip and feels awkward when let’s say, I go to grab a handful of popcorn.
I know the internet is a useless place to try and find a diagnosis, so I decided to head to my PCP to have all of this looked into. She sent me to a local neurologist to get tests done while performing her own set of blood tests.
The neurologist was very young, 8 yrs experience. Did a quick clinical exam and ordered bloodwork, ncs/emg, and brain/neck/spine mris.
Her bloodwork covered sjogrens, lupus, and ck levels. All negative. CK normal. Negative ANA as well.
I will be posting the results of the various mris and ncs/emg with this.
She said the only thing found was mild carpal tunnel in the right wrist she performed the test on. EMG supposedly normal- she wouldn’t give me a copy with the waves, only text.
My confusion is this..through some research on Froments sign, it appears to be an ulnar nerve issue. If no ulnar nerve issue was found on the ncs and I’m not having sensory disturbances with my thumbs- wouldn’t this point towards a motor neuron issue instead?
There is a definite change in my thumb joints and the “caving in” under pressure. This I cannot mark as perceived. I’ve been having a lot of localized twitching in my hands and thumbs lately as well.
Any insight would be appreciated. I understand that I’ve been dealing with this a fair amount of time, but I don’t feel like that excludes me from developing ALS just like any other person.
Once again, I appreciate your responses. Thank you for taking the time to read this.
I posted back in 2015 with some concerning symptoms I had been having since 2012. Muscle twitching, dizziness, perceived weakness, dexterity issues...
There were times over the past 7 years where all these symptoms seemed to disappear (besides some easy fatigue in hands when let’s say, spraying a water bottle) and a twitch here or there. 2012 was when all of this first hit. It faded about a year later and then came back in 2015 (this is when I made my last post).
It lasted maybe a good 6 months before fading for quite some time. June of 2019 is when the twitching ramped up again, my usual perceived weakness spots felt way worse than before, and the dexterity issues came back worse than before. Some issues have faded some...but my hand issues persist.
Now before I proceed, I saw one neurologist back in 2012 when this all started. He performed a brain MRI and an emg/ncs and couldn’t find more than mild carpal tunnel.
I haven’t seen a neurologist since then because like I stated, these symptoms seem to subside for a good amount of time where I gladly tried to move on with life and forget about it completely.
I’m very aware that ALS does not “come and go” and always tried to tell myself I must be dealing with BFS and this is just how it is. I was always able to rationalize that I don’t have any functional failure so I need to stop assuming ALS.
What has me concerned is my hands. I’ve had on and off dexterity issues since this started back in 2012, but it only lasted a day to a couple months. This now has been an issue since June of 2019 and what I can’t get past is my thumbs. What I’ve noticed is causing my “clumsiness” the most is my thumbs joints caving in. On both hands. If you’re familiar with Froments sign or Jeannes sign, both of my thumbs do this now. This was never an issue before and it’s definitely not something I can pass off as perceived. It effects my pinch grip and feels awkward when let’s say, I go to grab a handful of popcorn.
I know the internet is a useless place to try and find a diagnosis, so I decided to head to my PCP to have all of this looked into. She sent me to a local neurologist to get tests done while performing her own set of blood tests.
The neurologist was very young, 8 yrs experience. Did a quick clinical exam and ordered bloodwork, ncs/emg, and brain/neck/spine mris.
Her bloodwork covered sjogrens, lupus, and ck levels. All negative. CK normal. Negative ANA as well.
I will be posting the results of the various mris and ncs/emg with this.
She said the only thing found was mild carpal tunnel in the right wrist she performed the test on. EMG supposedly normal- she wouldn’t give me a copy with the waves, only text.
My confusion is this..through some research on Froments sign, it appears to be an ulnar nerve issue. If no ulnar nerve issue was found on the ncs and I’m not having sensory disturbances with my thumbs- wouldn’t this point towards a motor neuron issue instead?
There is a definite change in my thumb joints and the “caving in” under pressure. This I cannot mark as perceived. I’ve been having a lot of localized twitching in my hands and thumbs lately as well.
Any insight would be appreciated. I understand that I’ve been dealing with this a fair amount of time, but I don’t feel like that excludes me from developing ALS just like any other person.
Once again, I appreciate your responses. Thank you for taking the time to read this.
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