theViolet
New member
- Joined
- Oct 3, 2023
- Messages
- 3
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Pittsburgh
33F, no familial history of MND.
I am sorry to be posting here (which feels... rude), but my symptoms seem more extreme than 99% of those I've seen on the Benign Fasciculation Syndrome forum, which I've been haunting for a few weeks. I am, like many people who flood into this part of the ALS forum, very concerned about my health and the possibility of MND. I have read the pinned posts and I realize that a lot of my symptoms are sensory. Apologies for the extremely long post (I have an English degree...), but I've been documenting my symptoms and trying to be thorough.
In late June (around 6/25) I began experiencing the sensation of light strangulation in my neck. It didn't feel like something originating from inside my throat (not a globus sensation) and it wasn't preventing me from swallowing or breathing, though both functions felt a little more strained. The sensation felt more like something just under the surface of my neck was constricting, like pressure was being put upon my throat from just below the skin. I have never experienced this before, so it really frightened me, especially since it would come on at random and then disappear throughout the day, and didn't seem to be triggered by stress or anything obvious. I have a history of anxiety, but not health anxiety, and I'm familiar with the anxious throat closure sensation, and this was a whole new thing. This went on for the entirety of July.
I told my PCP about it and he ordered a thyroid ultrasound, which was done on 7/14/23 & came back normal, save for 2 small nodules, one of which was flagged as "moderately suspicious," but I was assured these wouldn't be the cause of the issue & that they were too tiny to be any type of problem. I also had my thyroid functions checked and they came out good. I had a lot of bloodwork done & the only unusual thing that came up was that my MPV is high (12.2fL) but it has been high since 2015, so I wasn't worried about that.
After this, I was sent to an ENT, who did a laryngoscopy (8/14/23) and found nothing out of the ordinary. This was followed up with a barium swallow test (8/25/23) which also came back fully normal.
By late July, though, the strangulation sensation had evolved into a scarier, more painful clenching/twisting/cramping feeling that felt like it was gripping from the back of the neck around the left side.
On 8/2/23, under supervision of my psychiatrist, I decided to go back on an antidepressant (Trintellix, an SSRI I'd been on for several years before tapering off of it probably 4 or 5 months before these symptoms began) because I was stressed and anxious about the mysterious throat issue. Around 1:30am on 8/3/23, the first night I'd resumed Trintellix (5mg), I had what I am assuming was a massive panic attack. I woke from sleep in a state of extreme terror, my entire body was shaking violently, I was hyperventilating, and I could not stop thinking that my death was imminent. This lasted for about 5-10 minutes (it is hard to gauge), and I tried to de-escalate it by splashing cold water on my face and taking an Ativan. This was the first panic attack I have ever had, and it was a doozy.
After this incident, I began experiencing extreme insomnia. I did not sleep for several days on end in early August, and I began having muscle aches beginning in my left calf after a charley horse that just never stopped hurting. My appetite was abruptly curbed, and I have lost a large amount of weight (I was 151 in late June, and I am currently 133 as of 9/30/23). This is all extremely unusual for me, since I am a big fan of both sleeping and eating. The insomnia was such that I could not fall asleep without aid of medication, and even then, I'd wake up very soon afterward in a hyper-alert state. I tried Trazodone, Mirtazapine, Vistaril, Melatonin, and good old Benadryl as sleep aids, and nothing worked. Around this time (during the first 2 weeks of August) I also started feeling an internal vibration sensation (a buzzing/rumbling that's sometimes in one limb, sometimes throughout my body, which I still experience), and a tight & clenching feeling around my upper ribcage, particularly at night when trying to sleep. I was extremely fatigued and confused after multiple weeks of this, but unable to rest. I was semi-regularly having violent tremors in the evenings, in which my legs and sometimes entire body would begin shaking uncontrollably for a few minutes. I'm not sure of the relevance of the things I experienced in early August, honestly, since I wasn't sleeping or eating and I was in a state of extreme anxiety, which definitely aggravated or all-out caused a lot of issues (e.g. I had vision issues, could not concentrate on anything, etc.).
Probably 2 weeks into August, I started having muscle fasciculations. This began in my left calf, traveled to my left thigh and foot, and very rapidly became widespread. They have occurred throughout my right leg, my abdomen, my ribcage, my right arm/shoulder, my jawline, my upper lip, my back, my chin... My left arm seems largely exempt, strangely. They vary in frequency and sensation--some are rapid, some are slower and more undulating. I also began having bouts of shortness of breath that would sometimes happen even at rest, like I was unable to take a satisfyingly deep breath.
I was referred to a neurologist due to this development, saw the neuro's PA, and she ordered Vitamin B12, Vitamin D 25 Hydroxy, CK, Sedimentation Rate, and C-Reactive Protein tests on 8/22/23 and did a clinical exam, and all came back normal. I was given a script to get a brain MRI with and without contrast, and an EMG/NCV. I was also tested for myasthenia gravis, which came out clear.
I got the MRI on 8/28/23 and it came back totally clear. I had the EMG (left leg and right arm) done on 9/1/23, and it also came back completely clear and did not pick up any fasciculations.
One of the things that worries me about this clean EMG is that, on 8/25/23, I went to the ER because my left foot (and part of my left calf) had gone completely numb (in retrospect, I don't know what I expected the ER to do about this, but I was scared). This numbness wasn't accompanied by pins & needles or tingling or any sensation. It was more of a "dead" numbness, a reduction in sensation.. My foot remained dead like this for about four weeks with fluctuations in how bad/strange it felt, and now it comes and goes. I have also been experiencing possibly-sciatic pain that runs down the back of my left leg & sometimes flares up and has caused my toes to twitch. I have a constant ache/tight sensation in the back of my thigh just above my left knee that has been there for over a month now. I have no past injuries or new overexertion that could explain this.
I have also been having a bizarre (ulnar?) pain in my right arm, which generally starts in the right shoulder blade and sometimes radiates down the arm all the way to my pinky and ring finger. Sometimes, when this happens to me, it is more difficult than normal to hold all of my fingers together, and my pinky shakes. The pain in my shoulder blade has been constant for over a month, and is sometimes a dull ache, sometimes a piercing/radiating pain, and sometimes a strange numbness like what I'd experienced with the left foot. It seems to have settled on numbness/heaviness over the past week.
Since then, stuff has gotten weirder. I have experienced numbness in my left thumb off and on for a week or so now, and just a few days ago, the lower right side of my face & my mouth/tongue/throat had reduced sensation for a few minutes. I have also been having what feels like spasms in the right side of my neck, like something is coiling up and cramping, which is often followed by a perceived difficulty swallowing/sensation of obstruction that's localized only in the right side of my throat that comes and goes & sometimes features soreness when swallowing. Meanwhile, the fasciculations seem to have reduced & settled in the areas I'm the most concerned by (my left leg and right arm). All of this is very frightening to me; it feels as though something has been traveling through my body and terrorizing me. I have perceived weakness in my left leg and right arm that is not clinical weakness (which my neuro will not hesitate to point out; I last saw him on 9/13 and he did another clinical exam that was clean, negative Babinsky sign, etc.). I felt very discouraged by the neurologist, who interrupted me constantly as I tried to explain my symptoms to him, and I worry that my documented history of anxiety is working against my credibility even though I have never doctor-shopped & generally just keep up with my routine physicals & preventative exams.
Generally, I am very distressed by what's been going on with my body and cannot find anything online (even ALS, honestly) that would present like this, but ALS is the closest I could find (though I'd have to have a VERY atypical presentation, I think). I know that Googling things is detrimental, but at this point, my doctors don't seem to have any ideas (I'm being sent to rheumatology but couldn't get an appointment until 11/1). I realize that I (particularly as a 33 year old woman) am not likely to have ALS, but unlikely isn't impossible, and I'd like to make sure that I've advocated for myself as much as possible. I don't know if I should try to get a second opinion from a neuromuscular specialist (especially since I'm concerned that the initial throat issue could've been a bulbar problem, and those muscles weren't tested on my EMG) or if I should just wait and see if anything on my body fails. In the unlikely event that this is an MND, I'd like to know so I can be on top of it and get involved with medication and/or clinical trials ASAP, and probably travel to a Mayo location. But I'm also hesitant to run back to my doctors and diminish my credibility further--especially since they saw me during a time when I hadn't been sleeping for days and was legitimately a little crazy for a while. I'd hoped that once I was well-rested, hydrated, nourished, and generally participating in my life more, I'd go back to normal, but I think I've reached that point & the leg/arm/neck/throat stuff, internal tremors, fatigue, & intermittent shortness of breath remain.
Any replies are much-appreciated. I'm not looking for a diagnosis or reassurance here (I crested the extreme anxiety portion of whatever this is experience a few weeks ago)--mostly, I would just like input on if it would make sense, in your opinion, for me to pester my doctors & demand to see a neuromuscular specialist. Again, sorry for writing a novel here, and much love to all PALS.
I am sorry to be posting here (which feels... rude), but my symptoms seem more extreme than 99% of those I've seen on the Benign Fasciculation Syndrome forum, which I've been haunting for a few weeks. I am, like many people who flood into this part of the ALS forum, very concerned about my health and the possibility of MND. I have read the pinned posts and I realize that a lot of my symptoms are sensory. Apologies for the extremely long post (I have an English degree...), but I've been documenting my symptoms and trying to be thorough.
In late June (around 6/25) I began experiencing the sensation of light strangulation in my neck. It didn't feel like something originating from inside my throat (not a globus sensation) and it wasn't preventing me from swallowing or breathing, though both functions felt a little more strained. The sensation felt more like something just under the surface of my neck was constricting, like pressure was being put upon my throat from just below the skin. I have never experienced this before, so it really frightened me, especially since it would come on at random and then disappear throughout the day, and didn't seem to be triggered by stress or anything obvious. I have a history of anxiety, but not health anxiety, and I'm familiar with the anxious throat closure sensation, and this was a whole new thing. This went on for the entirety of July.
I told my PCP about it and he ordered a thyroid ultrasound, which was done on 7/14/23 & came back normal, save for 2 small nodules, one of which was flagged as "moderately suspicious," but I was assured these wouldn't be the cause of the issue & that they were too tiny to be any type of problem. I also had my thyroid functions checked and they came out good. I had a lot of bloodwork done & the only unusual thing that came up was that my MPV is high (12.2fL) but it has been high since 2015, so I wasn't worried about that.
After this, I was sent to an ENT, who did a laryngoscopy (8/14/23) and found nothing out of the ordinary. This was followed up with a barium swallow test (8/25/23) which also came back fully normal.
By late July, though, the strangulation sensation had evolved into a scarier, more painful clenching/twisting/cramping feeling that felt like it was gripping from the back of the neck around the left side.
On 8/2/23, under supervision of my psychiatrist, I decided to go back on an antidepressant (Trintellix, an SSRI I'd been on for several years before tapering off of it probably 4 or 5 months before these symptoms began) because I was stressed and anxious about the mysterious throat issue. Around 1:30am on 8/3/23, the first night I'd resumed Trintellix (5mg), I had what I am assuming was a massive panic attack. I woke from sleep in a state of extreme terror, my entire body was shaking violently, I was hyperventilating, and I could not stop thinking that my death was imminent. This lasted for about 5-10 minutes (it is hard to gauge), and I tried to de-escalate it by splashing cold water on my face and taking an Ativan. This was the first panic attack I have ever had, and it was a doozy.
After this incident, I began experiencing extreme insomnia. I did not sleep for several days on end in early August, and I began having muscle aches beginning in my left calf after a charley horse that just never stopped hurting. My appetite was abruptly curbed, and I have lost a large amount of weight (I was 151 in late June, and I am currently 133 as of 9/30/23). This is all extremely unusual for me, since I am a big fan of both sleeping and eating. The insomnia was such that I could not fall asleep without aid of medication, and even then, I'd wake up very soon afterward in a hyper-alert state. I tried Trazodone, Mirtazapine, Vistaril, Melatonin, and good old Benadryl as sleep aids, and nothing worked. Around this time (during the first 2 weeks of August) I also started feeling an internal vibration sensation (a buzzing/rumbling that's sometimes in one limb, sometimes throughout my body, which I still experience), and a tight & clenching feeling around my upper ribcage, particularly at night when trying to sleep. I was extremely fatigued and confused after multiple weeks of this, but unable to rest. I was semi-regularly having violent tremors in the evenings, in which my legs and sometimes entire body would begin shaking uncontrollably for a few minutes. I'm not sure of the relevance of the things I experienced in early August, honestly, since I wasn't sleeping or eating and I was in a state of extreme anxiety, which definitely aggravated or all-out caused a lot of issues (e.g. I had vision issues, could not concentrate on anything, etc.).
Probably 2 weeks into August, I started having muscle fasciculations. This began in my left calf, traveled to my left thigh and foot, and very rapidly became widespread. They have occurred throughout my right leg, my abdomen, my ribcage, my right arm/shoulder, my jawline, my upper lip, my back, my chin... My left arm seems largely exempt, strangely. They vary in frequency and sensation--some are rapid, some are slower and more undulating. I also began having bouts of shortness of breath that would sometimes happen even at rest, like I was unable to take a satisfyingly deep breath.
I was referred to a neurologist due to this development, saw the neuro's PA, and she ordered Vitamin B12, Vitamin D 25 Hydroxy, CK, Sedimentation Rate, and C-Reactive Protein tests on 8/22/23 and did a clinical exam, and all came back normal. I was given a script to get a brain MRI with and without contrast, and an EMG/NCV. I was also tested for myasthenia gravis, which came out clear.
I got the MRI on 8/28/23 and it came back totally clear. I had the EMG (left leg and right arm) done on 9/1/23, and it also came back completely clear and did not pick up any fasciculations.
One of the things that worries me about this clean EMG is that, on 8/25/23, I went to the ER because my left foot (and part of my left calf) had gone completely numb (in retrospect, I don't know what I expected the ER to do about this, but I was scared). This numbness wasn't accompanied by pins & needles or tingling or any sensation. It was more of a "dead" numbness, a reduction in sensation.. My foot remained dead like this for about four weeks with fluctuations in how bad/strange it felt, and now it comes and goes. I have also been experiencing possibly-sciatic pain that runs down the back of my left leg & sometimes flares up and has caused my toes to twitch. I have a constant ache/tight sensation in the back of my thigh just above my left knee that has been there for over a month now. I have no past injuries or new overexertion that could explain this.
I have also been having a bizarre (ulnar?) pain in my right arm, which generally starts in the right shoulder blade and sometimes radiates down the arm all the way to my pinky and ring finger. Sometimes, when this happens to me, it is more difficult than normal to hold all of my fingers together, and my pinky shakes. The pain in my shoulder blade has been constant for over a month, and is sometimes a dull ache, sometimes a piercing/radiating pain, and sometimes a strange numbness like what I'd experienced with the left foot. It seems to have settled on numbness/heaviness over the past week.
Since then, stuff has gotten weirder. I have experienced numbness in my left thumb off and on for a week or so now, and just a few days ago, the lower right side of my face & my mouth/tongue/throat had reduced sensation for a few minutes. I have also been having what feels like spasms in the right side of my neck, like something is coiling up and cramping, which is often followed by a perceived difficulty swallowing/sensation of obstruction that's localized only in the right side of my throat that comes and goes & sometimes features soreness when swallowing. Meanwhile, the fasciculations seem to have reduced & settled in the areas I'm the most concerned by (my left leg and right arm). All of this is very frightening to me; it feels as though something has been traveling through my body and terrorizing me. I have perceived weakness in my left leg and right arm that is not clinical weakness (which my neuro will not hesitate to point out; I last saw him on 9/13 and he did another clinical exam that was clean, negative Babinsky sign, etc.). I felt very discouraged by the neurologist, who interrupted me constantly as I tried to explain my symptoms to him, and I worry that my documented history of anxiety is working against my credibility even though I have never doctor-shopped & generally just keep up with my routine physicals & preventative exams.
Generally, I am very distressed by what's been going on with my body and cannot find anything online (even ALS, honestly) that would present like this, but ALS is the closest I could find (though I'd have to have a VERY atypical presentation, I think). I know that Googling things is detrimental, but at this point, my doctors don't seem to have any ideas (I'm being sent to rheumatology but couldn't get an appointment until 11/1). I realize that I (particularly as a 33 year old woman) am not likely to have ALS, but unlikely isn't impossible, and I'd like to make sure that I've advocated for myself as much as possible. I don't know if I should try to get a second opinion from a neuromuscular specialist (especially since I'm concerned that the initial throat issue could've been a bulbar problem, and those muscles weren't tested on my EMG) or if I should just wait and see if anything on my body fails. In the unlikely event that this is an MND, I'd like to know so I can be on top of it and get involved with medication and/or clinical trials ASAP, and probably travel to a Mayo location. But I'm also hesitant to run back to my doctors and diminish my credibility further--especially since they saw me during a time when I hadn't been sleeping for days and was legitimately a little crazy for a while. I'd hoped that once I was well-rested, hydrated, nourished, and generally participating in my life more, I'd go back to normal, but I think I've reached that point & the leg/arm/neck/throat stuff, internal tremors, fatigue, & intermittent shortness of breath remain.
Any replies are much-appreciated. I'm not looking for a diagnosis or reassurance here (I crested the extreme anxiety portion of whatever this is experience a few weeks ago)--mostly, I would just like input on if it would make sense, in your opinion, for me to pester my doctors & demand to see a neuromuscular specialist. Again, sorry for writing a novel here, and much love to all PALS.
