xoinnamorata
Member
- Joined
- Oct 5, 2011
- Messages
- 19
- Reason
- Learn about ALS
- Country
- US
- State
- WV
- City
- Wheeling
Thank you for your time and consideration, in advance.
When my twitches started nearly 7 months ago, they had me panicking. In addition to the twitching, my only other symptoms were buzzing sensations through my feet and legs, however, at times, they went up through my trunk and even neck. I also had perceived weakness/muscle fatigue/"heavy legs", though it was eventually found by the neurologist that I had mono. So, with that discovery, I had my first HUGE sigh of relief. The only other findings at my visit were fairly brisk reflexes in my knees and clonus in my feet/ankles (however that works).
Ironically, my neurologist mentioned ALS at my first visit even before my twitching started. I knew next to nothing about it at the time, so I went home and researched. The first twitch I noticed was in my right, upper eyelid. It literally twitched constantly for nearly three weeks! Gradually, it subsided, and I began noticing the twitches in the arches of my feet and before long, they had spread everywhere. One day, my index finger waggled intermittently for nearly three hours. As far as I could tell, most of them were the "thumpers", strong ones that I felt. It didn't even occur to me to "look" for others. I FELT enough of them. I assumed that was it. One day, I was sitting on the couch with my legs propped up, and I noticed that my foot was twitching. But, I didn't feel it! So, this threw me into a bit of a panic. After noticing that, I noticed that, in addition to the thumps that I get in my right shoulder, there are almost always twitches there that I can easily see but do NOT feel. I have many of the same in my calf muscles.
I was pretty nervous for my up and coming EMG. I "knew" I was going to fail it. I ended up with a pretty thorough EMG of both arms and legs and was considered completely clean. They were even 'ooh'ing and 'aah'ing over my "young, healthy" nerves on the nerve conduction study. I praised God following the EMG. Finally, I can let this go!
Then, about, a week later, I was sitting at the park with my kids, perfectly calm. I went to swallow, just like I would any other time, and it just didn't happen. I don't know a good way of explaining it other than it was just like my brain forgot how to swallow. Like when you swallow a few times in succession ... eventually, you have to FORCE it. This happened then and then again on occasion. I became pretty fixated on it, since, as I read the symptoms of ALS, at the time, I rejoiced the absence of swallowing problems. Now, here I was. I took some anti-anxiety medicines hoping that it would take it away, that this was just something that my anxiety was making up after reading about it on the internet. I wasn't choking or having any problems eating ... I just felt like I was having a more difficult time getting it to actually GO. About a week later, I was eating oatmeal, and I choked. New panic. I convinced myself that I couldn't swallow anything with little bits of food, because I would choke again, so I started eating only things that I could compact into larger, solid pieces, and I've had luck with that. But, since then, I have been struggling harder and harder to get it to start. I have noticed that things like cake and other things that are dry or thick and crumble just get kind of stuck in my throat, and I need to take a drink or something to wash them down. Since it started, I should note, that I have also had persistent phlegm and a sore throat (for 6 months, now!). The phlegm is in higher concentration after I drink fluid, but seems to be lower after food, and the sore throat is sometimes constant, but sometimes seems to ease up for a bit after eating or drinking.
I consulted the neurologist about this. She "assured" me that if my swallowing issue was of neurological nature, I would be also choking on thin liquids. So far, I have not had THAT problem, but food has been a consistent problem. Even swallowing without food or liquid feels tight or strained. I have also noticed a clicking sound in my upper throat, which is sometimes present and sometimes not. I have never had that before this started, either. I was sent back to my GI doctor, as I have a good bit of issues with acid reflux, and all he did was changed me from Prilosec to Nexium.
I began to assimilate to this new problem of mine, as several months had now passed and nothing new was happening. And then, as soon as I calm down a bit from THIS problem, I wake up one morning, and as I am out and walking around, I notice that my legs feel unbearably heavy, though in a different, yet intangible sense than they did before. Just walking down a flight of steps causes my legs to almost completely lock up. I didn't feel it "coming on". Only a few days before, I had walked nearly three miles with a friend. And walked around the rest of that day in my high heels. No problem. So, for the first few days or so, I decided that I had probably pulled a muscle or something in my back. Or maybe this was just some kind of exercise intolerance that I have read about with BFS and other things, since my twitches have seemed to amp back up again. But, unlike most of what I read, this isn't after hours of exertion or a 2-mile run. I get out of bed and walk down the steps and my muscles lock. I haven't tripped, yet. No drop foot, and negative Babinski reflex, but it feels as if lifting or moving from my hips is beyond a chore. I rested yesterday, hoping for some improvement, but my legs today feel almost worse than ever.
So, after having been fully relieved and released this ALS fear, I feel as if it is back on me, and even stronger than ever. I have called my neurologist several times in a panic, fearing the worst, and she has told me, several times that she is "100% sure" that I do NOT have ALS, and last time, she even stated that she would stake her life on the "fact" that I do not have it.
To close for now, I will add some test results, and a bit of my background and family background. I am a 27-year old female. Prior to March of this year, I have never noticed any of these strange symptoms, aside from the hyper reflexes, which I have always had as far as I can remember, and which my Dad, sister, and Mom also had, which is why I never gave them much thought. As far as blood work is concerned, my B-12 is borderline/low, low vitamin D, low ferritin. I tested positive for RA factor, but my sed rate was normal, so she isn't pursuing it at the moment. Oglioclonal bands were found in my spinal fluid, but no lesions or anything of the sort were found on my MRI, aside from hemangiomas in my thoracic spine. I just had a myelogram for those last week and am waiting for results to see if perhaps the leg sensations are from spinal cord compression or something of the like (I am praying that they ARE!)which came back okay. Negative for Lupus, negative for Lyme disease. My barium swallow at the onset of my throat symptoms was normal. I just had one about 3 weeks ago. Also normal, but my throat is feeling terrible and continues to feel more so. There is a family history of Hereditary Spastic Paraplegia, which would explain my leg symptoms to a degree. However, the course of that disease is supposed to be VERY gradual and is limited to the legs, and therefore, does not explain my swallowing problem or twitches. I am being referred to a neuromuscular specialist in Columbus, Ohio, who has done research with this hereditary thing, but I can't get into her for a couple of months. In the meantime, I am racking my brain, and panicking nearly constantly. Any insight is greatly appreciated.
When my twitches started nearly 7 months ago, they had me panicking. In addition to the twitching, my only other symptoms were buzzing sensations through my feet and legs, however, at times, they went up through my trunk and even neck. I also had perceived weakness/muscle fatigue/"heavy legs", though it was eventually found by the neurologist that I had mono. So, with that discovery, I had my first HUGE sigh of relief. The only other findings at my visit were fairly brisk reflexes in my knees and clonus in my feet/ankles (however that works).
Ironically, my neurologist mentioned ALS at my first visit even before my twitching started. I knew next to nothing about it at the time, so I went home and researched. The first twitch I noticed was in my right, upper eyelid. It literally twitched constantly for nearly three weeks! Gradually, it subsided, and I began noticing the twitches in the arches of my feet and before long, they had spread everywhere. One day, my index finger waggled intermittently for nearly three hours. As far as I could tell, most of them were the "thumpers", strong ones that I felt. It didn't even occur to me to "look" for others. I FELT enough of them. I assumed that was it. One day, I was sitting on the couch with my legs propped up, and I noticed that my foot was twitching. But, I didn't feel it! So, this threw me into a bit of a panic. After noticing that, I noticed that, in addition to the thumps that I get in my right shoulder, there are almost always twitches there that I can easily see but do NOT feel. I have many of the same in my calf muscles.
I was pretty nervous for my up and coming EMG. I "knew" I was going to fail it. I ended up with a pretty thorough EMG of both arms and legs and was considered completely clean. They were even 'ooh'ing and 'aah'ing over my "young, healthy" nerves on the nerve conduction study. I praised God following the EMG. Finally, I can let this go!
Then, about, a week later, I was sitting at the park with my kids, perfectly calm. I went to swallow, just like I would any other time, and it just didn't happen. I don't know a good way of explaining it other than it was just like my brain forgot how to swallow. Like when you swallow a few times in succession ... eventually, you have to FORCE it. This happened then and then again on occasion. I became pretty fixated on it, since, as I read the symptoms of ALS, at the time, I rejoiced the absence of swallowing problems. Now, here I was. I took some anti-anxiety medicines hoping that it would take it away, that this was just something that my anxiety was making up after reading about it on the internet. I wasn't choking or having any problems eating ... I just felt like I was having a more difficult time getting it to actually GO. About a week later, I was eating oatmeal, and I choked. New panic. I convinced myself that I couldn't swallow anything with little bits of food, because I would choke again, so I started eating only things that I could compact into larger, solid pieces, and I've had luck with that. But, since then, I have been struggling harder and harder to get it to start. I have noticed that things like cake and other things that are dry or thick and crumble just get kind of stuck in my throat, and I need to take a drink or something to wash them down. Since it started, I should note, that I have also had persistent phlegm and a sore throat (for 6 months, now!). The phlegm is in higher concentration after I drink fluid, but seems to be lower after food, and the sore throat is sometimes constant, but sometimes seems to ease up for a bit after eating or drinking.
I consulted the neurologist about this. She "assured" me that if my swallowing issue was of neurological nature, I would be also choking on thin liquids. So far, I have not had THAT problem, but food has been a consistent problem. Even swallowing without food or liquid feels tight or strained. I have also noticed a clicking sound in my upper throat, which is sometimes present and sometimes not. I have never had that before this started, either. I was sent back to my GI doctor, as I have a good bit of issues with acid reflux, and all he did was changed me from Prilosec to Nexium.
I began to assimilate to this new problem of mine, as several months had now passed and nothing new was happening. And then, as soon as I calm down a bit from THIS problem, I wake up one morning, and as I am out and walking around, I notice that my legs feel unbearably heavy, though in a different, yet intangible sense than they did before. Just walking down a flight of steps causes my legs to almost completely lock up. I didn't feel it "coming on". Only a few days before, I had walked nearly three miles with a friend. And walked around the rest of that day in my high heels. No problem. So, for the first few days or so, I decided that I had probably pulled a muscle or something in my back. Or maybe this was just some kind of exercise intolerance that I have read about with BFS and other things, since my twitches have seemed to amp back up again. But, unlike most of what I read, this isn't after hours of exertion or a 2-mile run. I get out of bed and walk down the steps and my muscles lock. I haven't tripped, yet. No drop foot, and negative Babinski reflex, but it feels as if lifting or moving from my hips is beyond a chore. I rested yesterday, hoping for some improvement, but my legs today feel almost worse than ever.
So, after having been fully relieved and released this ALS fear, I feel as if it is back on me, and even stronger than ever. I have called my neurologist several times in a panic, fearing the worst, and she has told me, several times that she is "100% sure" that I do NOT have ALS, and last time, she even stated that she would stake her life on the "fact" that I do not have it.
To close for now, I will add some test results, and a bit of my background and family background. I am a 27-year old female. Prior to March of this year, I have never noticed any of these strange symptoms, aside from the hyper reflexes, which I have always had as far as I can remember, and which my Dad, sister, and Mom also had, which is why I never gave them much thought. As far as blood work is concerned, my B-12 is borderline/low, low vitamin D, low ferritin. I tested positive for RA factor, but my sed rate was normal, so she isn't pursuing it at the moment. Oglioclonal bands were found in my spinal fluid, but no lesions or anything of the sort were found on my MRI, aside from hemangiomas in my thoracic spine. I just had a myelogram for those last week and am waiting for results to see if perhaps the leg sensations are from spinal cord compression or something of the like (I am praying that they ARE!)which came back okay. Negative for Lupus, negative for Lyme disease. My barium swallow at the onset of my throat symptoms was normal. I just had one about 3 weeks ago. Also normal, but my throat is feeling terrible and continues to feel more so. There is a family history of Hereditary Spastic Paraplegia, which would explain my leg symptoms to a degree. However, the course of that disease is supposed to be VERY gradual and is limited to the legs, and therefore, does not explain my swallowing problem or twitches. I am being referred to a neuromuscular specialist in Columbus, Ohio, who has done research with this hereditary thing, but I can't get into her for a couple of months. In the meantime, I am racking my brain, and panicking nearly constantly. Any insight is greatly appreciated.