Cjs
New member
- Joined
- Mar 18, 2022
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- OH
- City
- Springboro
Hello, and thank you for your precious time!
I’ll try to keep this short and clear as I can.
I’ll preface this with I am waiting for an EMG appt, and understand that would be definitive to some extent. I also have a connective tissue disorder called Ehlers Danlos Syndrome that causes weird things in my body, but the concerning symptoms are new.
Okay, here goes: I have had body-wide twitching for about a month. I’m not super ridiculously concerned about them because I think they’re common with EDS. I also started experiencing numbness, tingling, and what I felt like was weakness and clumsiness, but that didn’t show up as clinical weakness on a neuro check and OT/PT assessment, though some clumsiness was noted. The tingling spread to all 4 limbs and my face and tongue over the course of the month and worsens over the course of the day, but is constant.
I also had 4 weeks of severe shortness of breath that was relieved somewhat with lying down (which seems incongruent with what I know of ALS) that has mostly abated. I don’t have dysarthria, or any new dysphagia just the tingling and odd sensation that makes my mouth feel like it’s not working properly.
I ended up in the ER last night and they did a head and spine CT and. Brain and cervical spine MRI. My cervical spine is an absolute mess and will likely require surgery and fusion, and a potential Chiari malformation.
Writing this I can see that ALS is probably not the dx, since I know tingling isn’t common, but I saw two posts/comments that upped my anxiety tenfold, one about mouth/tongue tingling leading to bulbar onset and another where the gentleman had undergone cervical fusion thinking his symptoms were related to that to find out he had ALS after the fact.
I did read the READ BEFORE POSTING. I actually screenshot it to save on my phone for my most anxious moments. I just needed to ask for thoughts about the possibility of this being ALS.
Okay, so this ended up long, sorry! I should add I’m a 41 yo female and that I’m an SLP who is an AAC/swallowing/respiratory specialist trying to build an ALS program at my hospital, so learning about ALS is my life and happened to roughly coincide with the the start of the weird body symptoms. I feel like this has contributed to my fears, but I am too far in to stop, so there’s constant exposure to information.
Thank you again for taking the time to help me and my crazy brain. I truly appreciate it!
Also, I have cramping in my L arm and leg, and tremors in my hands. Gabapentin seems to help with this, and the tingling in general, but my leg and arm on the left still both feel off
I’ll try to keep this short and clear as I can.
I’ll preface this with I am waiting for an EMG appt, and understand that would be definitive to some extent. I also have a connective tissue disorder called Ehlers Danlos Syndrome that causes weird things in my body, but the concerning symptoms are new.
Okay, here goes: I have had body-wide twitching for about a month. I’m not super ridiculously concerned about them because I think they’re common with EDS. I also started experiencing numbness, tingling, and what I felt like was weakness and clumsiness, but that didn’t show up as clinical weakness on a neuro check and OT/PT assessment, though some clumsiness was noted. The tingling spread to all 4 limbs and my face and tongue over the course of the month and worsens over the course of the day, but is constant.
I also had 4 weeks of severe shortness of breath that was relieved somewhat with lying down (which seems incongruent with what I know of ALS) that has mostly abated. I don’t have dysarthria, or any new dysphagia just the tingling and odd sensation that makes my mouth feel like it’s not working properly.
I ended up in the ER last night and they did a head and spine CT and. Brain and cervical spine MRI. My cervical spine is an absolute mess and will likely require surgery and fusion, and a potential Chiari malformation.
Writing this I can see that ALS is probably not the dx, since I know tingling isn’t common, but I saw two posts/comments that upped my anxiety tenfold, one about mouth/tongue tingling leading to bulbar onset and another where the gentleman had undergone cervical fusion thinking his symptoms were related to that to find out he had ALS after the fact.
I did read the READ BEFORE POSTING. I actually screenshot it to save on my phone for my most anxious moments. I just needed to ask for thoughts about the possibility of this being ALS.
Okay, so this ended up long, sorry! I should add I’m a 41 yo female and that I’m an SLP who is an AAC/swallowing/respiratory specialist trying to build an ALS program at my hospital, so learning about ALS is my life and happened to roughly coincide with the the start of the weird body symptoms. I feel like this has contributed to my fears, but I am too far in to stop, so there’s constant exposure to information.
Thank you again for taking the time to help me and my crazy brain. I truly appreciate it!
Also, I have cramping in my L arm and leg, and tremors in my hands. Gabapentin seems to help with this, and the tingling in general, but my leg and arm on the left still both feel off