jctucker
Member
- Joined
- Aug 8, 2012
- Messages
- 19
- Reason
- Learn about ALS
- Country
- US
- State
- OH
- City
- Middletown
Hello, all. First of all I'd like to say I've read many posts on this forum over the years due to my own health concerns, and I'd like to say thank you for being so kind and supportive of many who may or may not have ALS. You have done a great service to many people, I'm sure. I appreciate and respect this kind of kindness and support.
Now, on to the symptoms...
Oh, where do I start? I am a 22 year old male, and my list of symptoms is exhausting. It is a laundry list of things going back to a relative few symptoms that began in the summer of 2006...
In the summer of 2006, I had a particularly bad case of bronchitis. I got over it in about a month or two with the help of antibiotics, but a month or so later I started noticing that my rectum would become inflamed and irritated, often producing blood on toilet paper when wiped (hematochezia). I became kind of concerned about this and went to the doctor, who referred me to a gastroenterologist. The gastro performed a colonoscopy as well as an upper GI and found nothing except some hemorrhoids of the type that don't bleed. Meanwhile I noticed my stool was getting looser and looser. More of a paste than solid waste (no rhyme intended), and it would sometimes leak from my rectum without my control while passing gas, etc. Still unsure if this is related to the main chunk of symptoms, which began in...
...Fall of 2006. I went back to school for my senior year of high school. I started noticing muscle fatigue when going up and down the stairs at school. I started getting twitches once in a while in my calf muscles. I didn't think much of it. Over the course of the next year, however, it started getting worse. The twitches increased in frequency and location, and I started noticing that I had difficulty focusing sometimes, along with bouts of confusion (the best way I can describe it is "brain fog"). I also noticed some vision loss during this time. I went back to the doctor, who ordered an MRI. The MRI came back negative. I thought maybe I was just being a worrywart or whatever. Fast forward to the winter of 2007...
In the winter of 2007, I started noticing the twitches were becoming more widespread and definitely increasing in frequency. I underwent an EEG at the request of my PCP and it also came back negative. At this point I had researched MS and ALS some and was kind of scared of finding one of those. I thought the EEG would register one of them though, and it didn't, so I stopped worrying...again...stupidly. However, things have only gotten worse.
Over the next two years from then, I noticed my muscles getting progressively and progressively weaker, with things like drying my hair with a towel after a shower becoming exhausting tasks (arms burning, etc.) Twitches became all up and down both legs and arms and pretty much constant (instead of intermittent). I noticed that I was developing shortness of breath and difficulty swallowing. I went back to the doctor in 2010 at some point and described all of these things to him. He told me I had chronic fatigue syndrome and fibromyalgia after 1 visit and no labs (he was a physician's assistant). I didn't go back, until...
Yesterday, I went to the doctor again because I've started experiencing other symptoms. Over the last couple of weeks, I've developed pain in the muscles of my upper neck, what feels like difficulty speaking (I feel like I'm slurring words, but no one else seems to notice. My lips feel "clumsy" and the muscles I've described get very tired when talking). The brain fog is back, and with a vengeance. It's hard to concentrate at all on anything, and I often feel confused, especially when reading text. Over the last 6 months or so, I've experienced a lot of dry blood in my nose, at all hours of the day. Also over the last 6 months or so, I've noticed that I laugh or cry at much less funny/sad things than I used to. I don't really laugh or cry at inappropriate times, but if something even remotely sentimental happens in a movie or something, I'm weeping like a widow. If one of my friends says something even remotely comical, I'm laughing out loud. I described all of my symptoms to my doctor, who then did a physical examination that included poking me in various spots and asking if it hurt. He also looked in my mouth, shined a light in my eyes, and pressed against me in various spots and told me not to let him push me over. He did no reflex tests, etc., but when he came back in the room, he told me something to the effect of, "Look, I know you say you have these symptoms, and that they've been getting a little worse over the years or whatever, but I can't find anything wrong with you, so I want to develop a plan where we don't make the same mistakes we did before and we do other tests." Meaning he doesn't want to do another MRI and probably believes that half of my symptoms are made up, I guess. He ordered blood work done and I did it yesterday. I should also note that I am exhausted all of the time. No matter how much I sleep (when I can--I also have insomnia most of the time), I feel exhausted. Like when I wake up, I feel like I could literally just go right back to sleep. Anyways...
I honestly don't know where to turn. I feel defeated by my doctors (what few I've seen--I've put off seeing a doc for a long time because of no insurance and no money. My trip to the doc yesterday + labs cost me $55, and I'm unemployed, so this is difficult), defeated by my symptoms, and I don't know where to go. My doctor seems unfazed by my symptoms and told me I'm overweight and need to diet + exercise. Does this sound like ALS progression to anyone? If not, does it sound like any other MND? If not MND, then what? Please help in any way you can. I honestly don't know where else to turn.
Thank you for your time and reading this exhaustive wall of text.
Now, on to the symptoms...
Oh, where do I start? I am a 22 year old male, and my list of symptoms is exhausting. It is a laundry list of things going back to a relative few symptoms that began in the summer of 2006...
In the summer of 2006, I had a particularly bad case of bronchitis. I got over it in about a month or two with the help of antibiotics, but a month or so later I started noticing that my rectum would become inflamed and irritated, often producing blood on toilet paper when wiped (hematochezia). I became kind of concerned about this and went to the doctor, who referred me to a gastroenterologist. The gastro performed a colonoscopy as well as an upper GI and found nothing except some hemorrhoids of the type that don't bleed. Meanwhile I noticed my stool was getting looser and looser. More of a paste than solid waste (no rhyme intended), and it would sometimes leak from my rectum without my control while passing gas, etc. Still unsure if this is related to the main chunk of symptoms, which began in...
...Fall of 2006. I went back to school for my senior year of high school. I started noticing muscle fatigue when going up and down the stairs at school. I started getting twitches once in a while in my calf muscles. I didn't think much of it. Over the course of the next year, however, it started getting worse. The twitches increased in frequency and location, and I started noticing that I had difficulty focusing sometimes, along with bouts of confusion (the best way I can describe it is "brain fog"). I also noticed some vision loss during this time. I went back to the doctor, who ordered an MRI. The MRI came back negative. I thought maybe I was just being a worrywart or whatever. Fast forward to the winter of 2007...
In the winter of 2007, I started noticing the twitches were becoming more widespread and definitely increasing in frequency. I underwent an EEG at the request of my PCP and it also came back negative. At this point I had researched MS and ALS some and was kind of scared of finding one of those. I thought the EEG would register one of them though, and it didn't, so I stopped worrying...again...stupidly. However, things have only gotten worse.
Over the next two years from then, I noticed my muscles getting progressively and progressively weaker, with things like drying my hair with a towel after a shower becoming exhausting tasks (arms burning, etc.) Twitches became all up and down both legs and arms and pretty much constant (instead of intermittent). I noticed that I was developing shortness of breath and difficulty swallowing. I went back to the doctor in 2010 at some point and described all of these things to him. He told me I had chronic fatigue syndrome and fibromyalgia after 1 visit and no labs (he was a physician's assistant). I didn't go back, until...
Yesterday, I went to the doctor again because I've started experiencing other symptoms. Over the last couple of weeks, I've developed pain in the muscles of my upper neck, what feels like difficulty speaking (I feel like I'm slurring words, but no one else seems to notice. My lips feel "clumsy" and the muscles I've described get very tired when talking). The brain fog is back, and with a vengeance. It's hard to concentrate at all on anything, and I often feel confused, especially when reading text. Over the last 6 months or so, I've experienced a lot of dry blood in my nose, at all hours of the day. Also over the last 6 months or so, I've noticed that I laugh or cry at much less funny/sad things than I used to. I don't really laugh or cry at inappropriate times, but if something even remotely sentimental happens in a movie or something, I'm weeping like a widow. If one of my friends says something even remotely comical, I'm laughing out loud. I described all of my symptoms to my doctor, who then did a physical examination that included poking me in various spots and asking if it hurt. He also looked in my mouth, shined a light in my eyes, and pressed against me in various spots and told me not to let him push me over. He did no reflex tests, etc., but when he came back in the room, he told me something to the effect of, "Look, I know you say you have these symptoms, and that they've been getting a little worse over the years or whatever, but I can't find anything wrong with you, so I want to develop a plan where we don't make the same mistakes we did before and we do other tests." Meaning he doesn't want to do another MRI and probably believes that half of my symptoms are made up, I guess. He ordered blood work done and I did it yesterday. I should also note that I am exhausted all of the time. No matter how much I sleep (when I can--I also have insomnia most of the time), I feel exhausted. Like when I wake up, I feel like I could literally just go right back to sleep. Anyways...
I honestly don't know where to turn. I feel defeated by my doctors (what few I've seen--I've put off seeing a doc for a long time because of no insurance and no money. My trip to the doc yesterday + labs cost me $55, and I'm unemployed, so this is difficult), defeated by my symptoms, and I don't know where to go. My doctor seems unfazed by my symptoms and told me I'm overweight and need to diet + exercise. Does this sound like ALS progression to anyone? If not, does it sound like any other MND? If not MND, then what? Please help in any way you can. I honestly don't know where else to turn.
Thank you for your time and reading this exhaustive wall of text.