stuffyearsago
Member
- Joined
- Jul 4, 2019
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Mountain View
Thank you in advance for reading about my odd, long history of symptoms, which started 25 years ago, came and went for 10 years, disappeared for 15 years, and are now back and considerably worse as of 10 weeks ago and are now having a incapacitating impact on my life, largely due to breathing problems which have very recently developed. I am a 53 year old female.
It started 25 years ago when I was 28 years old. A rush of dizziness woke me up in the night in 2/1994. Those rushes of dizziness continued sporadically during the day in the following weeks. It was not vertigo - just a rush lasting a couple seconds and residual light-headed feeling. Soon after, I also had a strange head pressure, like a pressure in my sinuses or maybe behind my sinuses, although my sinuses were clear, and I've never had allergies nor sinus problems. A few weeks later, a new symptom of chest pressure appeared, like a constriction around my upper chest, mostly felt in front, like my upper ribcage was being squeezed. In 5/1994, I woke up with numbness in my forearm to my pinky in my left hand. Then in was in my right hand soon after. It wasn't complete numbness but rather loss of sensation, tingling, buzzing, burning - all sensory stuff. All of this spread to my limbs - but mostly felt more intensely in hands and feet. I'd go through a cluster of days where I'd have complete numbness in an arm waking up, but I could usually shake it out. These symptoms initially lasted a very long time, they would wax and wane, move around to different areas of my body, and I think there were periods (several months) in which they'd largely go away. This went on for 10 years. I saw many doctors - several neurologists who dismissed me (often with a diagnosis of anxiety) since my symptoms were always subclinical, and tests were negative. I was young and alarmed although most of these things were sensory and largely just uncomfortable and worrisome as I had always been healthy and knew something was not right. At some point, I was convinced I had mild MS, despite nothing showing up on MRIs. I had no weakness during those 10 years - not really even a perception of weakness and certainly nothing that lasted.
Then at some point, maybe in around 2004 or 2005, without any reason, the symptoms went away. A couple years prior, I had made an effort to change insurance and see an MS specialist - had my 4th MRI from over the 10 years - negative, again. In 2004, the MS specialist said we could do a spinal tap, but I thought about it and the fact that it was invasive, and again, at that point, my symptoms seemed better, so I decided to wait and see. The symptoms went away by around 2005, no idea why. I took Vitamin D3, B12, and a multi-vitamin during that time, nothing else. Then in 2007, I was motivated to start exercising and lose weight - had been very overweight. I was in the best shape of my life by mid 2008 and hiked to the top of Half Dome twice over the next few years, went up Mt. Whitney 3 times, and hiked and backpacked all over Yosemite High Country. Over the last few years, I had forgotten about my old symptoms, decided that I did not have MS and wrote the whole 10 years off as a hormone or metabolic syndrome issue. The symptoms were gone and remained gone until 4/20/2019.
On 4/20/2019, I went hiking with a friend. We were driving to our destination when I felt a tingling, buzzing, burning down my arms - I was immediately worried as it reminded me of the symptoms that I had not had for 15 years. I felt a little ill and shaky, tried to convince myself it was blood-sugar (have no known issues, though), and continued to the destination and went on the hike. The sensory symptoms came on like a chill over the next days, and at least once or twice, I had that same strange wave of dizziness from years prior, lasting a couple of seconds and leaving we in a residual fog of light-headedness. But this time, it was more intense.
On 5/6/2019, I had a new, completely unfamiliar symptom. I was going on a charity walk and standing, just talking to friends, and I suddenly felt a really abnormal weakness sweep down my legs, making it feel like my knees may buckle, or my legs would not hold me. I lifted my legs up and down to try to shake it out, but it was still there. I walked around a bit, but I felt shaky and weak in a way I had never felt before. I still did the walk, and afterwards, I did an extra several miles with a friend to try to walk it out. I walked a total of 10 miles that day, but I knew something wasn't right with my legs.
The last thing I wanted to do was see a neurologist, but the persisting leg weakness frightened me, and I knew I'd better see one. I started thinking that this was MS after all. The neuro ordered an MRI - brain, C-spine, even T-spine this time, with contrast. Negative again.
At some point, weeks after the leg weakness, I began having twitching everywhere - legs and arms, mostly, but have had them in the back and face. I rarely could catch a visual of the larger twitches - were not long lasting. Most of my twitching has been rapid fire, small internal twitching mostly in various limbs, sometimes back, face, comes and goes.
Started having weakness soon after in my left tricep and down my arm - burning, tingling. In retrospect, I remember having chills down my left arm that I blew off months ago. That weakness is sometimes in my shoulders down. I have episodes of intensity of this which make my arm movements shaky from shoulders down, but then improve.
On 6/4/2019, I started having the strange head pressure from years prior, where it seemed like my sinuses were under pressure even though they were clear, but it was way more intense and somehow seemed to affect my breathing. It was almost a painful level of pressure that was in the center of my head more toward the left side - felt like an ice cube in my brain - not like a normal headache, though - more like something pressing on a nerve. That night, I could not fall asleep without awaking in terror that I had stopped breathing. But when I made a concentrated effort to breathe, I could. It just seemed like my breathing would become very shallow, and I would suddenly come out of my quasi-asleep state in a panic - this happened over and over. Years before, it never impacted my breathing like this.
Ended up at the ER around 6/10, feeling shortness of breath, but the feeling passed while there - heart and lungs were fine. O2 was fine. Shortness of breath feelings have come and gone since then. Ended up in the ER a second time days later due to accidental hyperventilation. I felt like I was not breathing due to constriction but ended up overbreathing and hyperventilating - had never done that before - totally accidentally got myself in that state. Now I recognize it and can stop it. They gave me Xanax, which I used to sleep - note that I had never such meds to sleep before. I'd never had sleeping issues before this breathing thing started happening on 6/4. Something periodically restricts my breathing and then improves, maybe much like how the other symptoms intensify and improve?
Around this time, I noticed that it was terribly uncomfortable to sleep on my right side. I felt like I was sleeping on a hump, and there was pressure in my upper abdomen. I had a friend take a pic, and my back is suddenly looking asymmetrical and thicker on the right side. When I laid down on my back, it was like there was a band right below my ribs, all the way across, and there was a repeating spasm or contraction or something, right in the middle of my upper abdomen. It wasn't quite a twitch because it rolled. I feel like something has happened to my upper ab muscle. I've noticed muscle loss elsewhere - left arm, quads - all of my muscles just seem smaller. The spasm has stopped, but I still have the tight feeling in my upper abs right below my ribs, and I still have the thickening on the right side of my back, which makes it uncomfortable to sleep.
I also lost about 15 lbs in 2 weeks although I was eating much less as I was convinced I had MS and try Paleo and just not hungry. Also, just prior, I had been trying to lose some weight, going to the gym. I even pushed the gym after leg weakness and kept hiking until the breathing problems started.
Could this muscle loss happen so suddenly, or am I just suddenly aware of it? The issue with sleeping on my side and the abdominal issue seems sudden, but in retrospect, I remember a discomfort when sleeping on my belly earlier on. There was one thing that did start many months ago, and I blew it off - it was a feeling of numbness in my back on the right side, just below my bra strap. It seemed to come and go, and I mostly only noticed it when sitting and crossing my legs and figured it was my posture.
Currently, I find it extremely had to sleep - there's a thickening on the right side of my ribs and a tightness in my abdomen that pulls when I lay on my right side. Then if I lay on my back, it pulls right below my ribs. Then if I lay on my left, it also pulls, and it seems harder to breathe. I used to sleep so easily - 8 hours, never waking. Now, I can only sleep with Trazodone, which I'm taking instead of the Xanax. It at least gets me a few hours of sleep. I generally wake up at 3 am in fear and anxiety about what's happening to me.
I have had weird feelings in my tongue and jaw and throat. My tongue sometimes feels numb or large. A sore feeling sometimes comes over my jaw, and a tight feeling around my neck. These things intensify and fade, over hours.
I also have woken up with a numb arm at times. Most recently last week, I had a numb pinky, ring, and middle finger and numbness across the top of my hand down my forearm in the right arm, and then the next day, the very same thing in the left arm. Has not happened this week.
I saw a neurologist at my HMO's ALS clinic. He gave me a clinical exam (6/24) and an EMG and a nerve conduction test (7/2), which he declared normal and essentially dismissed me. I've also seen a pulmonologist who has declared my lungs fine. I even had a CT-scan yesterday, which was normal. I had many blood tests to rule out other things. I would like to get a more thorough Lyme test (western blot), though. I have not had a spinal tap.
I am thinking that all of this is a continuation/worsening of what started 25 years ago, continued 10 years, and went away for 15 years. Is it even possible with ALS? I have read of people talking about more subtle/insidious symptoms years prior. I also read about an effort to study medical records of ALS patients to try to identify early warnings or identify commonalities, and that article indicated some ALS patients were misdiagnosed with MS, but it indicated it was in the 5 years prior.
Currently, my experience with undx'ed neurological symptoms and several neurologists over a 10 year period 25 years ago, on top of still not having clinical signs, is making me look like someone with an anxiety disorder. It's horrible because my symptoms were physically manifested then and are physically manifested now and considerably worse, with weakness and muscle loss as new symptoms - albeit still subclinical in neuro tests.
I am going to ask the pulmonologist to continue to check my breathing. There was some abnormality detected in my pulmonology tests, but it was subtle, and the pulmonologist dismissed it as mild asthma (which I've never had). I also had a sleep study, but I only had the heart/O2 device, and they called that minor obstructive sleep apnea. But I never had sleep apnea nor sleep problems prior to 6/4. Now, very suddenly, I can't even sleep without Trazodone, and I have this thickening on the right side of my back and tightness across my upper abs. Sleeping on the left side seems to restrict my breathing more and create a pulling feeling in my upper abs.
If this is ALS, I know it's atypical. I'm extremely frightened, especially because of the impact to my breathing, and yes, I definitely do have major anxiety and fear because of these symptoms. But the symptoms are causing the anxiety and fear. I've had no stress in my life that could have brought this on.
Thank you so much for any help, advice, insight, opinions, comments.
It started 25 years ago when I was 28 years old. A rush of dizziness woke me up in the night in 2/1994. Those rushes of dizziness continued sporadically during the day in the following weeks. It was not vertigo - just a rush lasting a couple seconds and residual light-headed feeling. Soon after, I also had a strange head pressure, like a pressure in my sinuses or maybe behind my sinuses, although my sinuses were clear, and I've never had allergies nor sinus problems. A few weeks later, a new symptom of chest pressure appeared, like a constriction around my upper chest, mostly felt in front, like my upper ribcage was being squeezed. In 5/1994, I woke up with numbness in my forearm to my pinky in my left hand. Then in was in my right hand soon after. It wasn't complete numbness but rather loss of sensation, tingling, buzzing, burning - all sensory stuff. All of this spread to my limbs - but mostly felt more intensely in hands and feet. I'd go through a cluster of days where I'd have complete numbness in an arm waking up, but I could usually shake it out. These symptoms initially lasted a very long time, they would wax and wane, move around to different areas of my body, and I think there were periods (several months) in which they'd largely go away. This went on for 10 years. I saw many doctors - several neurologists who dismissed me (often with a diagnosis of anxiety) since my symptoms were always subclinical, and tests were negative. I was young and alarmed although most of these things were sensory and largely just uncomfortable and worrisome as I had always been healthy and knew something was not right. At some point, I was convinced I had mild MS, despite nothing showing up on MRIs. I had no weakness during those 10 years - not really even a perception of weakness and certainly nothing that lasted.
Then at some point, maybe in around 2004 or 2005, without any reason, the symptoms went away. A couple years prior, I had made an effort to change insurance and see an MS specialist - had my 4th MRI from over the 10 years - negative, again. In 2004, the MS specialist said we could do a spinal tap, but I thought about it and the fact that it was invasive, and again, at that point, my symptoms seemed better, so I decided to wait and see. The symptoms went away by around 2005, no idea why. I took Vitamin D3, B12, and a multi-vitamin during that time, nothing else. Then in 2007, I was motivated to start exercising and lose weight - had been very overweight. I was in the best shape of my life by mid 2008 and hiked to the top of Half Dome twice over the next few years, went up Mt. Whitney 3 times, and hiked and backpacked all over Yosemite High Country. Over the last few years, I had forgotten about my old symptoms, decided that I did not have MS and wrote the whole 10 years off as a hormone or metabolic syndrome issue. The symptoms were gone and remained gone until 4/20/2019.
On 4/20/2019, I went hiking with a friend. We were driving to our destination when I felt a tingling, buzzing, burning down my arms - I was immediately worried as it reminded me of the symptoms that I had not had for 15 years. I felt a little ill and shaky, tried to convince myself it was blood-sugar (have no known issues, though), and continued to the destination and went on the hike. The sensory symptoms came on like a chill over the next days, and at least once or twice, I had that same strange wave of dizziness from years prior, lasting a couple of seconds and leaving we in a residual fog of light-headedness. But this time, it was more intense.
On 5/6/2019, I had a new, completely unfamiliar symptom. I was going on a charity walk and standing, just talking to friends, and I suddenly felt a really abnormal weakness sweep down my legs, making it feel like my knees may buckle, or my legs would not hold me. I lifted my legs up and down to try to shake it out, but it was still there. I walked around a bit, but I felt shaky and weak in a way I had never felt before. I still did the walk, and afterwards, I did an extra several miles with a friend to try to walk it out. I walked a total of 10 miles that day, but I knew something wasn't right with my legs.
The last thing I wanted to do was see a neurologist, but the persisting leg weakness frightened me, and I knew I'd better see one. I started thinking that this was MS after all. The neuro ordered an MRI - brain, C-spine, even T-spine this time, with contrast. Negative again.
At some point, weeks after the leg weakness, I began having twitching everywhere - legs and arms, mostly, but have had them in the back and face. I rarely could catch a visual of the larger twitches - were not long lasting. Most of my twitching has been rapid fire, small internal twitching mostly in various limbs, sometimes back, face, comes and goes.
Started having weakness soon after in my left tricep and down my arm - burning, tingling. In retrospect, I remember having chills down my left arm that I blew off months ago. That weakness is sometimes in my shoulders down. I have episodes of intensity of this which make my arm movements shaky from shoulders down, but then improve.
On 6/4/2019, I started having the strange head pressure from years prior, where it seemed like my sinuses were under pressure even though they were clear, but it was way more intense and somehow seemed to affect my breathing. It was almost a painful level of pressure that was in the center of my head more toward the left side - felt like an ice cube in my brain - not like a normal headache, though - more like something pressing on a nerve. That night, I could not fall asleep without awaking in terror that I had stopped breathing. But when I made a concentrated effort to breathe, I could. It just seemed like my breathing would become very shallow, and I would suddenly come out of my quasi-asleep state in a panic - this happened over and over. Years before, it never impacted my breathing like this.
Ended up at the ER around 6/10, feeling shortness of breath, but the feeling passed while there - heart and lungs were fine. O2 was fine. Shortness of breath feelings have come and gone since then. Ended up in the ER a second time days later due to accidental hyperventilation. I felt like I was not breathing due to constriction but ended up overbreathing and hyperventilating - had never done that before - totally accidentally got myself in that state. Now I recognize it and can stop it. They gave me Xanax, which I used to sleep - note that I had never such meds to sleep before. I'd never had sleeping issues before this breathing thing started happening on 6/4. Something periodically restricts my breathing and then improves, maybe much like how the other symptoms intensify and improve?
Around this time, I noticed that it was terribly uncomfortable to sleep on my right side. I felt like I was sleeping on a hump, and there was pressure in my upper abdomen. I had a friend take a pic, and my back is suddenly looking asymmetrical and thicker on the right side. When I laid down on my back, it was like there was a band right below my ribs, all the way across, and there was a repeating spasm or contraction or something, right in the middle of my upper abdomen. It wasn't quite a twitch because it rolled. I feel like something has happened to my upper ab muscle. I've noticed muscle loss elsewhere - left arm, quads - all of my muscles just seem smaller. The spasm has stopped, but I still have the tight feeling in my upper abs right below my ribs, and I still have the thickening on the right side of my back, which makes it uncomfortable to sleep.
I also lost about 15 lbs in 2 weeks although I was eating much less as I was convinced I had MS and try Paleo and just not hungry. Also, just prior, I had been trying to lose some weight, going to the gym. I even pushed the gym after leg weakness and kept hiking until the breathing problems started.
Could this muscle loss happen so suddenly, or am I just suddenly aware of it? The issue with sleeping on my side and the abdominal issue seems sudden, but in retrospect, I remember a discomfort when sleeping on my belly earlier on. There was one thing that did start many months ago, and I blew it off - it was a feeling of numbness in my back on the right side, just below my bra strap. It seemed to come and go, and I mostly only noticed it when sitting and crossing my legs and figured it was my posture.
Currently, I find it extremely had to sleep - there's a thickening on the right side of my ribs and a tightness in my abdomen that pulls when I lay on my right side. Then if I lay on my back, it pulls right below my ribs. Then if I lay on my left, it also pulls, and it seems harder to breathe. I used to sleep so easily - 8 hours, never waking. Now, I can only sleep with Trazodone, which I'm taking instead of the Xanax. It at least gets me a few hours of sleep. I generally wake up at 3 am in fear and anxiety about what's happening to me.
I have had weird feelings in my tongue and jaw and throat. My tongue sometimes feels numb or large. A sore feeling sometimes comes over my jaw, and a tight feeling around my neck. These things intensify and fade, over hours.
I also have woken up with a numb arm at times. Most recently last week, I had a numb pinky, ring, and middle finger and numbness across the top of my hand down my forearm in the right arm, and then the next day, the very same thing in the left arm. Has not happened this week.
I saw a neurologist at my HMO's ALS clinic. He gave me a clinical exam (6/24) and an EMG and a nerve conduction test (7/2), which he declared normal and essentially dismissed me. I've also seen a pulmonologist who has declared my lungs fine. I even had a CT-scan yesterday, which was normal. I had many blood tests to rule out other things. I would like to get a more thorough Lyme test (western blot), though. I have not had a spinal tap.
I am thinking that all of this is a continuation/worsening of what started 25 years ago, continued 10 years, and went away for 15 years. Is it even possible with ALS? I have read of people talking about more subtle/insidious symptoms years prior. I also read about an effort to study medical records of ALS patients to try to identify early warnings or identify commonalities, and that article indicated some ALS patients were misdiagnosed with MS, but it indicated it was in the 5 years prior.
Currently, my experience with undx'ed neurological symptoms and several neurologists over a 10 year period 25 years ago, on top of still not having clinical signs, is making me look like someone with an anxiety disorder. It's horrible because my symptoms were physically manifested then and are physically manifested now and considerably worse, with weakness and muscle loss as new symptoms - albeit still subclinical in neuro tests.
I am going to ask the pulmonologist to continue to check my breathing. There was some abnormality detected in my pulmonology tests, but it was subtle, and the pulmonologist dismissed it as mild asthma (which I've never had). I also had a sleep study, but I only had the heart/O2 device, and they called that minor obstructive sleep apnea. But I never had sleep apnea nor sleep problems prior to 6/4. Now, very suddenly, I can't even sleep without Trazodone, and I have this thickening on the right side of my back and tightness across my upper abs. Sleeping on the left side seems to restrict my breathing more and create a pulling feeling in my upper abs.
If this is ALS, I know it's atypical. I'm extremely frightened, especially because of the impact to my breathing, and yes, I definitely do have major anxiety and fear because of these symptoms. But the symptoms are causing the anxiety and fear. I've had no stress in my life that could have brought this on.
Thank you so much for any help, advice, insight, opinions, comments.