jmiah
New member
- Joined
- Sep 14, 2021
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello all,
I am humbled by your graciousness and service to the anxious folks out there with strange symptoms. I hesitated on posting for weeks, but here we are.
I am 40m with a fairly long history of chronic lymphocytic leukemia (never treated) and some other ailments from my military service in Iraq. I started having symptoms that were concerning in the beginning of August of this year, but possibly started a year ago or so.
I had a one night stay in a hospital which was cancer related and they treated me for high potassium which ended up being a falsely high reading. Long story. I was sent home the next day and that's when the troubles started.
It began with a vibration like sensation in the abdomen which I chalked up to the med they gave me for the potassium (kayalexelate). Nonetheless, it impacted my sleep and I had a few relatively sleepless nights in a row. Then started the twitching. First in the legs, then basically migrating all around. I experienced significant weakness in the calves at that time as well as the hands and forearms.
Fortunately I already had a Neuro apt with a NP scheduled and she did a clinical exam on me and found no issues despite the complaints of fasciculations. Ironically, I had an EMG done in May for other (I thought non related) Neuro issues related to neuropathy. It was clean but a couple of months prior to all of this. Neuro NP noted it would be highly unlikely to have that clean EMG (carpal tunnel right hand) and then just a few months later develop these symptoms and have them be ALS.
As the weeks went by my symptoms worsened. The weakness was clear in arms and legs especially. I started to drop things more. I was running into the edges of doorways and just clumsier than usual. Then I started to have tongue and mouth issues. It started with biting my tongue when saying certain sounds. I'm a mental health therapist so I talk a lot and it was obvious to me but not to anyone else. It had persisted and I have begun biting my cheeks inadvertently when just opening and closing my mouth. Dentist doesn't see any anatomical issue. I bit my tongue in my sleep for the first time ever recently. Fasciculations and weakness persist and I have clearly lost significant muscle on my hands, firearms, and lower legs and feet. Wife notices too. It's noticable on pictures from a year ago how different my hands are.
As far as the mouth issues, I do have some large tonsils and sleep apnea untreated so I'm hoping that's the issue with my mouth. But a little ironic with the other symptom on top of it.
I have a second EMG scheduled for November 3 and a spinal tap for next week. Labs and imaging done within the last year are all clear, including MRI in Dec of 2020.
I will add that I had a bad run of viral illnesses for about 2 months prior to all of this starting and even tested positive for parainfluenza in the hospital.
Thank you all for your time and I wish everyone well.
Jeremy
I am humbled by your graciousness and service to the anxious folks out there with strange symptoms. I hesitated on posting for weeks, but here we are.
I am 40m with a fairly long history of chronic lymphocytic leukemia (never treated) and some other ailments from my military service in Iraq. I started having symptoms that were concerning in the beginning of August of this year, but possibly started a year ago or so.
I had a one night stay in a hospital which was cancer related and they treated me for high potassium which ended up being a falsely high reading. Long story. I was sent home the next day and that's when the troubles started.
It began with a vibration like sensation in the abdomen which I chalked up to the med they gave me for the potassium (kayalexelate). Nonetheless, it impacted my sleep and I had a few relatively sleepless nights in a row. Then started the twitching. First in the legs, then basically migrating all around. I experienced significant weakness in the calves at that time as well as the hands and forearms.
Fortunately I already had a Neuro apt with a NP scheduled and she did a clinical exam on me and found no issues despite the complaints of fasciculations. Ironically, I had an EMG done in May for other (I thought non related) Neuro issues related to neuropathy. It was clean but a couple of months prior to all of this. Neuro NP noted it would be highly unlikely to have that clean EMG (carpal tunnel right hand) and then just a few months later develop these symptoms and have them be ALS.
As the weeks went by my symptoms worsened. The weakness was clear in arms and legs especially. I started to drop things more. I was running into the edges of doorways and just clumsier than usual. Then I started to have tongue and mouth issues. It started with biting my tongue when saying certain sounds. I'm a mental health therapist so I talk a lot and it was obvious to me but not to anyone else. It had persisted and I have begun biting my cheeks inadvertently when just opening and closing my mouth. Dentist doesn't see any anatomical issue. I bit my tongue in my sleep for the first time ever recently. Fasciculations and weakness persist and I have clearly lost significant muscle on my hands, firearms, and lower legs and feet. Wife notices too. It's noticable on pictures from a year ago how different my hands are.
As far as the mouth issues, I do have some large tonsils and sleep apnea untreated so I'm hoping that's the issue with my mouth. But a little ironic with the other symptom on top of it.
I have a second EMG scheduled for November 3 and a spinal tap for next week. Labs and imaging done within the last year are all clear, including MRI in Dec of 2020.
I will add that I had a bad run of viral illnesses for about 2 months prior to all of this starting and even tested positive for parainfluenza in the hospital.
Thank you all for your time and I wish everyone well.
Jeremy