Steve97
New member
- Joined
- May 4, 2022
- Messages
- 6
- Reason
- DX UMND/PLS
- Diagnosis
- 05/2022
- Country
- US
- State
- VA
Hello. First off, I just wanted to acknowledge what a wonderful and helpful community there is on this forum. So, regardless of where my situation leads me, I appreciate the years of discussion that have been archived for the undiagnosed such as myself to research on.
To preface, I have read the stickies and a good number of prior threads, so I've learned a lot so far. Such a great resource compared to the sometimes overly general Dr. Google.
For some background my situation, in December I start to notice my legs would start to burn, be sore or generally hurt after a basic walk. Each day I could walk less and less without pain. Eventually it became a constant shooting pain from the hip to the foot. In early March, I developed muscle twitching all over, mostly at rest, which includes flexor spasms(jerks). I got concerned in early April when the same shooting pain developed in both arms as well. I ended up going to a university hospital to get in checked out and get some pain relief.
I ended up having a good number of neurological exams due to the university nature and I believe they were concerned about possible guillian-barre. One of my exams, which was quite detailed, flagged a few abnormalities (hyperflexia(bilateral), positive hoffman's(bilateral), positive babinski, extended jaw jerk, spastic catch on my right leg, some muscle atrophy along with increased muscle tone). Based on that, I was offered admission to try a figure out what might be going on.
I ended up getting 2 MRI's (brain, spine), EMG/NCV (2 limbs) and blood work. The MRIs were largely unremarkable, only a bulged disc at c6-c7. The NCV was normal and the EMG was 'clean' (no denevervation) the only indication was just a confirmation of c6-c7 issues. It was performed by a neuromuscular specialist who was instructing students at the time, so it was quite clear to me there was no concern. The blood work offered no alternate explanations. I was discharged and given gabapentin for the pain with only c6-c7 as a likely cause.
As of today, the pain is a bit better. For some odd reason, my joints, including my neck, have started to snap/pop/grind in the last couple of weeks. Also, I've noticed some vague changes to my tongue and throat area. My strength is also clinically normal (5/5) as of last week. My general concerns are centered around worsening flexor spasms, continued twitching all over, some off balance sensations and possible changes in the bulbar region.
I know from the stickies I shouldn't be concerned with ALS (onset with pain, all over twitches, no clinical weakness, bilateral hyperflexia etc.). Joint cracking seems to have been dispelled as meaningless as a possible early symptom in the past. What gives me a lot of pause is the positive hoffman's. babinski and jaw jerk. That seems to point to an UMND at a minimum, at least as far as I can tell. Is there any significant concern with it actually turning into ALS in this case (or possibly PLS)? I was hoping to find someone with a similar presentation and see what their diagnosis end up being. I didn't find an exact enough fit, so hence the post. I am following up with a neuromusclar specialist soon, so I will be getting a proper diagnosis. I was just curious for a community take on a 'clean' emg with multiple abnormal exam findings.
Thank you ever so much for your time.
To preface, I have read the stickies and a good number of prior threads, so I've learned a lot so far. Such a great resource compared to the sometimes overly general Dr. Google.
For some background my situation, in December I start to notice my legs would start to burn, be sore or generally hurt after a basic walk. Each day I could walk less and less without pain. Eventually it became a constant shooting pain from the hip to the foot. In early March, I developed muscle twitching all over, mostly at rest, which includes flexor spasms(jerks). I got concerned in early April when the same shooting pain developed in both arms as well. I ended up going to a university hospital to get in checked out and get some pain relief.
I ended up having a good number of neurological exams due to the university nature and I believe they were concerned about possible guillian-barre. One of my exams, which was quite detailed, flagged a few abnormalities (hyperflexia(bilateral), positive hoffman's(bilateral), positive babinski, extended jaw jerk, spastic catch on my right leg, some muscle atrophy along with increased muscle tone). Based on that, I was offered admission to try a figure out what might be going on.
I ended up getting 2 MRI's (brain, spine), EMG/NCV (2 limbs) and blood work. The MRIs were largely unremarkable, only a bulged disc at c6-c7. The NCV was normal and the EMG was 'clean' (no denevervation) the only indication was just a confirmation of c6-c7 issues. It was performed by a neuromuscular specialist who was instructing students at the time, so it was quite clear to me there was no concern. The blood work offered no alternate explanations. I was discharged and given gabapentin for the pain with only c6-c7 as a likely cause.
As of today, the pain is a bit better. For some odd reason, my joints, including my neck, have started to snap/pop/grind in the last couple of weeks. Also, I've noticed some vague changes to my tongue and throat area. My strength is also clinically normal (5/5) as of last week. My general concerns are centered around worsening flexor spasms, continued twitching all over, some off balance sensations and possible changes in the bulbar region.
I know from the stickies I shouldn't be concerned with ALS (onset with pain, all over twitches, no clinical weakness, bilateral hyperflexia etc.). Joint cracking seems to have been dispelled as meaningless as a possible early symptom in the past. What gives me a lot of pause is the positive hoffman's. babinski and jaw jerk. That seems to point to an UMND at a minimum, at least as far as I can tell. Is there any significant concern with it actually turning into ALS in this case (or possibly PLS)? I was hoping to find someone with a similar presentation and see what their diagnosis end up being. I didn't find an exact enough fit, so hence the post. I am following up with a neuromusclar specialist soon, so I will be getting a proper diagnosis. I was just curious for a community take on a 'clean' emg with multiple abnormal exam findings.
Thank you ever so much for your time.