peter12354
Member
- Joined
- Apr 2, 2016
- Messages
- 12
- Reason
- Learn about ALS
- Country
- US
- State
- Tennessee
- City
- Nashville
Hey everybody,
I'm new to all of this, as I never expected I'd be within five miles of a neurological issue at my age. I just turned 20 five days ago (3/28/96), and I am literally TERRIFIED that I have ALS.
My symptoms have been going on for the past seven or eight weeks (since right after Valentine's Day) - it started with a knee flimsiness of some sort in my left leg. Of course, I'm a hypochondriac, so I naturally assumed I had MS (lol, what?). But as time progressed, I began getting fasciculations all over, and I've noticed that it's like I have a leg length discrepancy now, with my right foot being both larger, flatter, and attached to what appears to be a longer leg. I began having an "electric rod" sort of muscle excitability feeling in my legs (some weird combo of feeling muscle fatigue and overexcitement) and (even though I know this part isn't a symptom of ALS) I began to have some pretty mad paraesthesia in my right foot. The last two toes bend out when I bend them too, which is a bit weird. Two Saturdays into it, I had my first full-blown panic attack ever.
I was so petrified by all of my "MS" symptoms that I ended up taking a week off of school and going to see a neuro (she's brilliant, and the head of the South Texas MS Institute), who did a relatively basic neuro exam and then ordered an MRI just to be "extra certain" it was all OCD, anxiety, psychological reasons, etc. She told me she was 99.9% certain that I didn'tt have MS, she prescribed me some Xanax and we went our separate ways. I was in the mountains when i got my MRI results back, and it was, by coincidence, the afternoon following my clean MRI that I got perceived weakness in my left hand. The leg twitching (especially now in my right instep, which is still a 24/7 fasciculation) and hand weakness were really getting to me at this point, but I soldiered on, etc. I immediately then switched to ALS being the culprit, and unfortunately, I think I'm right about that self-diagnosis.
After the skiing trip, (I skied fine, by the way, despite the hoodoo voodoo going on in my legs) I visited a new psychiatrist, who theorized that this was all due to an intense drug reaction I had with Welbutrin after going off it for a few weeks (the symptoms started 4 or 5 days afterwards), saying that it was a serotonin deficiency, and that he was 100% certain that I didn't have ALS. He prescribed me Lexipro and that was that.
Fast forward a bit, and these symptoms keep getting worse. Admittedly, the leg situation has changed/ calmed down, and even with the arm situation, I can still play guitar, piano, run, walk, use them relatively normally, etc. I began to get cramps in certain muscles, and the cramping has plagued me since. I have no sex drive anymore (I actually haven't had one for a while, but that might be anxiety, though, and this is GROSS, but my testicles seem smaller and less firm than usual), and I'm so fatigued it isn't even funny. There were also two bizarre instances of getting pins and needles in my hands for about an hour, and one where I got pins and needles in my right foot. What's scaring the living shit out of me is the bulbar side of stuff.
For the past couple of weeks, I've been having on-and-off speech issues, until this past week, it became relatively steady. Other people don't seem to notice it, but I do. Of course, being the OCD guy that I am, two days ago I looked up specific bulbar symptoms and found tongue fasciculations. I went to the bathroom, and lo-and-behold, my tongue has wavy, quivery little fasciculations (as well as bigger, more jerky twitches) that I can't feel, but can see (24/7). Likewise, I have a positive jaw jerk, and fasciculations on the weak jaw muscle on my right side when I bite down. My voice is hoarse, and even though I might have had a slight chest cold or something, my gag reflex is more intense than usual too, and I have globus.
I know I've probably looked up wayyyyyy too much ALS stuff, and I know I'm OCD, but this really, really, really seems like ALS. My current state is functional, somewhat twitchy in my body, very twitchy tongue, feels weird when I speak, and excessively tired. My fasciculation hot spots are my left shoulder, right instep and apparently tongue. I've had paralyzing fear of ALS since my MRIs came back clear, and I know my anxiety and stress can do crazy stuff, but I can't see how it would cause all of this. I've been in touch with both my neurologist and psychiatrist, and my psychiatrist has been adamant that it's not ALS, saying that "I'm just flat-out too young for it". Upon seeing a video of my tongue fasciculation at rest this morning, he said I should go see an ENT when I get home, but that he still is "100%" certain I don't have ALS. My neurologist has said in the past "No, Peter, I don't think you have ALS, and I wouldn't recommend an EMG", but since I emailed her about this most recent batch of stuff has said that she wants to see me again to evaluate. I am 100% convinced that I have ALS and it makes me want to throw up. I have the hyperreflexia of the gag and jaw, twitching, atrophy of right mandibular jaw muscle, etc. I've read that BFS wouldn't cause anything like what I've experienced, and that if anxiety were to have caused my jaw jerk, I would be hyper reflexive everywhere. I have negative Babinski (less reflexive in my right foot, but still normal), kind of negative Hoffman (a bit excited in my left hand), and my jaw jerk is more slight than the stuff I see on Youtube, but it's still definitely noticeable and there. Likewise, my left hand shakes when I pick something up.
I know I'm incredibly young for this disease, but I was hoping you guys could give some input as to my condition. Also, I have no family history of neurological issues. I don't want to wither away and die in my twenties or thirties - I'm so, so scared.
I'm new to all of this, as I never expected I'd be within five miles of a neurological issue at my age. I just turned 20 five days ago (3/28/96), and I am literally TERRIFIED that I have ALS.
My symptoms have been going on for the past seven or eight weeks (since right after Valentine's Day) - it started with a knee flimsiness of some sort in my left leg. Of course, I'm a hypochondriac, so I naturally assumed I had MS (lol, what?). But as time progressed, I began getting fasciculations all over, and I've noticed that it's like I have a leg length discrepancy now, with my right foot being both larger, flatter, and attached to what appears to be a longer leg. I began having an "electric rod" sort of muscle excitability feeling in my legs (some weird combo of feeling muscle fatigue and overexcitement) and (even though I know this part isn't a symptom of ALS) I began to have some pretty mad paraesthesia in my right foot. The last two toes bend out when I bend them too, which is a bit weird. Two Saturdays into it, I had my first full-blown panic attack ever.
I was so petrified by all of my "MS" symptoms that I ended up taking a week off of school and going to see a neuro (she's brilliant, and the head of the South Texas MS Institute), who did a relatively basic neuro exam and then ordered an MRI just to be "extra certain" it was all OCD, anxiety, psychological reasons, etc. She told me she was 99.9% certain that I didn'tt have MS, she prescribed me some Xanax and we went our separate ways. I was in the mountains when i got my MRI results back, and it was, by coincidence, the afternoon following my clean MRI that I got perceived weakness in my left hand. The leg twitching (especially now in my right instep, which is still a 24/7 fasciculation) and hand weakness were really getting to me at this point, but I soldiered on, etc. I immediately then switched to ALS being the culprit, and unfortunately, I think I'm right about that self-diagnosis.
After the skiing trip, (I skied fine, by the way, despite the hoodoo voodoo going on in my legs) I visited a new psychiatrist, who theorized that this was all due to an intense drug reaction I had with Welbutrin after going off it for a few weeks (the symptoms started 4 or 5 days afterwards), saying that it was a serotonin deficiency, and that he was 100% certain that I didn't have ALS. He prescribed me Lexipro and that was that.
Fast forward a bit, and these symptoms keep getting worse. Admittedly, the leg situation has changed/ calmed down, and even with the arm situation, I can still play guitar, piano, run, walk, use them relatively normally, etc. I began to get cramps in certain muscles, and the cramping has plagued me since. I have no sex drive anymore (I actually haven't had one for a while, but that might be anxiety, though, and this is GROSS, but my testicles seem smaller and less firm than usual), and I'm so fatigued it isn't even funny. There were also two bizarre instances of getting pins and needles in my hands for about an hour, and one where I got pins and needles in my right foot. What's scaring the living shit out of me is the bulbar side of stuff.
For the past couple of weeks, I've been having on-and-off speech issues, until this past week, it became relatively steady. Other people don't seem to notice it, but I do. Of course, being the OCD guy that I am, two days ago I looked up specific bulbar symptoms and found tongue fasciculations. I went to the bathroom, and lo-and-behold, my tongue has wavy, quivery little fasciculations (as well as bigger, more jerky twitches) that I can't feel, but can see (24/7). Likewise, I have a positive jaw jerk, and fasciculations on the weak jaw muscle on my right side when I bite down. My voice is hoarse, and even though I might have had a slight chest cold or something, my gag reflex is more intense than usual too, and I have globus.
I know I've probably looked up wayyyyyy too much ALS stuff, and I know I'm OCD, but this really, really, really seems like ALS. My current state is functional, somewhat twitchy in my body, very twitchy tongue, feels weird when I speak, and excessively tired. My fasciculation hot spots are my left shoulder, right instep and apparently tongue. I've had paralyzing fear of ALS since my MRIs came back clear, and I know my anxiety and stress can do crazy stuff, but I can't see how it would cause all of this. I've been in touch with both my neurologist and psychiatrist, and my psychiatrist has been adamant that it's not ALS, saying that "I'm just flat-out too young for it". Upon seeing a video of my tongue fasciculation at rest this morning, he said I should go see an ENT when I get home, but that he still is "100%" certain I don't have ALS. My neurologist has said in the past "No, Peter, I don't think you have ALS, and I wouldn't recommend an EMG", but since I emailed her about this most recent batch of stuff has said that she wants to see me again to evaluate. I am 100% convinced that I have ALS and it makes me want to throw up. I have the hyperreflexia of the gag and jaw, twitching, atrophy of right mandibular jaw muscle, etc. I've read that BFS wouldn't cause anything like what I've experienced, and that if anxiety were to have caused my jaw jerk, I would be hyper reflexive everywhere. I have negative Babinski (less reflexive in my right foot, but still normal), kind of negative Hoffman (a bit excited in my left hand), and my jaw jerk is more slight than the stuff I see on Youtube, but it's still definitely noticeable and there. Likewise, my left hand shakes when I pick something up.
I know I'm incredibly young for this disease, but I was hoping you guys could give some input as to my condition. Also, I have no family history of neurological issues. I don't want to wither away and die in my twenties or thirties - I'm so, so scared.
