PandaBear25
New member
- Joined
- Oct 25, 2023
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- VN
Hello,
Thanks a lot to everyone hear for the labor you do to help others who are suffering. I've read the "read before posting" sticky, so I'm trying to be respectful in how I ask this question so as not to waste anyone's time. I'm a 33 year old white male. From the US, living in Vietnam as an expat teacher. I'm asking here for some guidance on what types of tests I should get if I have symptoms that are concerning, but not sure how to proceed. First for background: no history of health problems. But I do have ALS in my family, grandmother on paternal side. Also, I recently (1 year ago, before coming to Vietnam,) suffered a double trauma in my life after a divorce, and then trauma after serving in a Kurdish militia as a volunteer fighter and ending up as a prisoner in Iraq. But besides these mental strains, very healthy. Rarely drink, no drugs, but I do vape/smoke. Workout regularly.
Anyway, back in May, I started having tooth pain, went to dentist, they told me to see a neurologist that it was likely trigeminal nerve pain. Soon after, this became dizziness. Went through several doctors at Vinmec hospital in DaNang & Hanoi, Vietnam and got prescribed a myriad of drugs, from anti-psychotics, to anti-epileptics. Had an MRI (no contrast) but it was unremarkable. This was around June. Eventually the dizziness and trigeminal pain went away.
Then, starting around September, started waking up consistently every night with numb hands, sometimes feet. Would alternate between nights. But almost every night, I'd wake up with this symptom. Soon after, I had tinnitus start in mostly my left ear. Hasn't stopped since. One evening, I had trembling bilaterally in my pinkies & ring fingers & fingers started to drift outward and down, on left and right hands respectively. Then, started having intense cramping in hands, arms, calves, as though I'd worked out. Ceased working out for a bit, and the pain remained. Headaches started, popping up out of nowhere, then disappearing. At this point, I went to a neuro, and she asked some questions, and tested my strength & reflexes, looked at my tongue, declared nothing wrong. Then started cramping, numbness, shooting nerve pain, and electric feel on tips of fingertips which became more frequent & more intense. Came and went sporadically, but rarely fully went away for more than a day. One day I woke up, and hands just felt dead, so I went into doc, they sent me into a ENT to check out tinnitus first. He was very concerned and almost referred me to a neuro, but then said that since I'd been to the doc a couple times before, he thought I was "hysterical" and referred me to a GP. GP was pretty perplexed and gave me a general diagnosis of "dysautonomia," and prescribed me vitamins. ENT booked me to see a psychologist, who I've been regularly seeing.
Around this time twitches began, starting in calf, then across body. I started to have pain in my throat & neck muscles, and a few days later noticed a scalloped tongue & that my uvula was deflected & my soft palate is sagging. Again, it's been the kind of thing where some days are good, others bad. So I went into the neuro again, really pushed, and they agreed to see me and gave me an EMG after I told them I'd seen an ENT & a psychologist. EMG was clean. Said I should try mindfulness and prescribed all the same vitamins that the other docs had suggested. After this visit, there was some abatement, but not fully. But then this past week, trigeminal nerve pain has returned, twitching has returned, and is now super strong and visible in my left thumb muscle. Joints constantly clicking and popping now, particularly in that thumb.Also noticed some imprinting in my hands after holding an object, which had never happened before. I have no idea if that's indicative or atrophy or not. I'm in Vietnam, I ride the motorbike a lot since it's the main way to get around, and have done some pretty hard motorbike trips that have been hard on my hands. But I'm at wits end here. All my muscles do what I want, I have not noticed a decrease in strength that would cause me to worry. But with my familial history of ALS, I have to wonder.
Anyway, I'm not looking for a diagnosis, I know that can't be done here, but what I am curious about is what I should be pushing for here with doctors to figure out what this is? I've had a clean EMG, but symptoms just keep popping up, becoming more visible, and changing, intensifying for several days, and mostly gone the next. I know that in the US, it would be likely for me to get some further tests, like a spinal tap, genetic testing, etc, to rule out ALS, since I know it's a diagnosis of exclusion. But docs at the hospital, one of the best in Hanoi, basically told me they've reached the end of their testing by doing the EMG. I can't tell if they can't or won't in this case, particularly since they keep circling around to my PTSD. Medical care here is good and affordable, so I'm trying to take advantage of it. But I don't feel like I'm getting answers that really tell me anything concrete about the symptoms I'm experiencing. I know what PTSD feels like, and I deal with it daily, but this feels different & distinctly physical in origin, though I know those things are related. I can't out-doctor a doctor, and don't want to. I do trust what they are telling me, but I want some concrete answers about what's going on and don't know what I should be pushing for while continuing to take the vitamins and practice mindfulness as prescribed. I'm going to see the ENT again Friday to show him what's going on with the back of my throat and see what he has to say, since that is a concrete sign not just a symptom. Any feedback on how to proceed, get a concrete diagnosis, and rule out the scary stuff, would be welcome, since this is really taking a toll on mental health both of me, and my girlfriend. She's Vietnamese, and even has a very different attitude towards disease than I do, and her support has limits. Anyway, thanks so much for reading this, and for any feedback, on the symptoms, or for what tests I should pursue.
Thanks a lot to everyone hear for the labor you do to help others who are suffering. I've read the "read before posting" sticky, so I'm trying to be respectful in how I ask this question so as not to waste anyone's time. I'm a 33 year old white male. From the US, living in Vietnam as an expat teacher. I'm asking here for some guidance on what types of tests I should get if I have symptoms that are concerning, but not sure how to proceed. First for background: no history of health problems. But I do have ALS in my family, grandmother on paternal side. Also, I recently (1 year ago, before coming to Vietnam,) suffered a double trauma in my life after a divorce, and then trauma after serving in a Kurdish militia as a volunteer fighter and ending up as a prisoner in Iraq. But besides these mental strains, very healthy. Rarely drink, no drugs, but I do vape/smoke. Workout regularly.
Anyway, back in May, I started having tooth pain, went to dentist, they told me to see a neurologist that it was likely trigeminal nerve pain. Soon after, this became dizziness. Went through several doctors at Vinmec hospital in DaNang & Hanoi, Vietnam and got prescribed a myriad of drugs, from anti-psychotics, to anti-epileptics. Had an MRI (no contrast) but it was unremarkable. This was around June. Eventually the dizziness and trigeminal pain went away.
Then, starting around September, started waking up consistently every night with numb hands, sometimes feet. Would alternate between nights. But almost every night, I'd wake up with this symptom. Soon after, I had tinnitus start in mostly my left ear. Hasn't stopped since. One evening, I had trembling bilaterally in my pinkies & ring fingers & fingers started to drift outward and down, on left and right hands respectively. Then, started having intense cramping in hands, arms, calves, as though I'd worked out. Ceased working out for a bit, and the pain remained. Headaches started, popping up out of nowhere, then disappearing. At this point, I went to a neuro, and she asked some questions, and tested my strength & reflexes, looked at my tongue, declared nothing wrong. Then started cramping, numbness, shooting nerve pain, and electric feel on tips of fingertips which became more frequent & more intense. Came and went sporadically, but rarely fully went away for more than a day. One day I woke up, and hands just felt dead, so I went into doc, they sent me into a ENT to check out tinnitus first. He was very concerned and almost referred me to a neuro, but then said that since I'd been to the doc a couple times before, he thought I was "hysterical" and referred me to a GP. GP was pretty perplexed and gave me a general diagnosis of "dysautonomia," and prescribed me vitamins. ENT booked me to see a psychologist, who I've been regularly seeing.
Around this time twitches began, starting in calf, then across body. I started to have pain in my throat & neck muscles, and a few days later noticed a scalloped tongue & that my uvula was deflected & my soft palate is sagging. Again, it's been the kind of thing where some days are good, others bad. So I went into the neuro again, really pushed, and they agreed to see me and gave me an EMG after I told them I'd seen an ENT & a psychologist. EMG was clean. Said I should try mindfulness and prescribed all the same vitamins that the other docs had suggested. After this visit, there was some abatement, but not fully. But then this past week, trigeminal nerve pain has returned, twitching has returned, and is now super strong and visible in my left thumb muscle. Joints constantly clicking and popping now, particularly in that thumb.Also noticed some imprinting in my hands after holding an object, which had never happened before. I have no idea if that's indicative or atrophy or not. I'm in Vietnam, I ride the motorbike a lot since it's the main way to get around, and have done some pretty hard motorbike trips that have been hard on my hands. But I'm at wits end here. All my muscles do what I want, I have not noticed a decrease in strength that would cause me to worry. But with my familial history of ALS, I have to wonder.
Anyway, I'm not looking for a diagnosis, I know that can't be done here, but what I am curious about is what I should be pushing for here with doctors to figure out what this is? I've had a clean EMG, but symptoms just keep popping up, becoming more visible, and changing, intensifying for several days, and mostly gone the next. I know that in the US, it would be likely for me to get some further tests, like a spinal tap, genetic testing, etc, to rule out ALS, since I know it's a diagnosis of exclusion. But docs at the hospital, one of the best in Hanoi, basically told me they've reached the end of their testing by doing the EMG. I can't tell if they can't or won't in this case, particularly since they keep circling around to my PTSD. Medical care here is good and affordable, so I'm trying to take advantage of it. But I don't feel like I'm getting answers that really tell me anything concrete about the symptoms I'm experiencing. I know what PTSD feels like, and I deal with it daily, but this feels different & distinctly physical in origin, though I know those things are related. I can't out-doctor a doctor, and don't want to. I do trust what they are telling me, but I want some concrete answers about what's going on and don't know what I should be pushing for while continuing to take the vitamins and practice mindfulness as prescribed. I'm going to see the ENT again Friday to show him what's going on with the back of my throat and see what he has to say, since that is a concrete sign not just a symptom. Any feedback on how to proceed, get a concrete diagnosis, and rule out the scary stuff, would be welcome, since this is really taking a toll on mental health both of me, and my girlfriend. She's Vietnamese, and even has a very different attitude towards disease than I do, and her support has limits. Anyway, thanks so much for reading this, and for any feedback, on the symptoms, or for what tests I should pursue.
