A long vent - aka, my story
Hello!
I've been to this message board off and on since June 2011, when my symptoms started. Hard to believe it's been almost three years. I'm not sure if anyone will read this, but I wanted to share my story anyways, because it's been a really hard road for me (as I'm sure it has been for everyone here!) and I feel like I've walked most of it alone. The people I've confided in have either written me off as a hypochondriac or have simply changed the subject.
A little bit about me first - I'm a 26 year old white female. I'm back in school, studying to be a Chemical Engineer. I work full time, love to run (if I can...) and I ride horses.
It started in June of 2011. I was texting and noticed that my thumb seemed to have a little trouble sliding across the screen to unlock my phone. I laughed at myself, thinking that I'd been texting too much. However, shortly after that I started getting twitches all throughout my body and the weird half-asleep weakness seemed to encompass my whole hand to the wrist. I could do everything normally, but it just seemed to feel weird.
Of course, I consulted Dr. Google and he told me I was dying. I proceeded to eat cookie dough and cry. Seriously. But then the symptoms seemed to subside, and I slowly decided I wasn't dying. I rode my horse like normal and actually trained for my first marathon that year (and qualified for Boston).
However, the following spring, a week before my third marathon, I woke up with a strangely sore hamstring. I didn't think much of it and it didn't really hinder my running. But a month later (June again) my vision went blurry and cloudy in my right eye. I completely freaked out and finally went to a doctor, who diagnosed me with some sort of infection, and although he admitted that it could be ON, he didn't think it was. I dutifully did the eyedrops and my vision cleared up completely after around six weeks, although it does occasionally seem to get a little blurry again ever since.
More worrisome was the tremor I developed in my arms at nearly the same time. It was worse in the right arm than the left, and was coupled with a feeling of weakness or strain in my triceps. It only showed up when I lowered my arm (as in a karate chop). I went to the doctor, who wrote me off as a whiny girl and told me it wasn't MS because I could walk fine. Didn't ever tell me why I had a tremor, and I was just happy to hear what I wanted to hear.
I struggled through that summer, held together by my horse more than anything. I ran another marathon that December, but by this point my hamstring was really starting to bother me - it felt weak and tired all the time. I ran the Boston Marathon in spring of 2013, but it was a struggle the whole way. My leg constantly felt tight and weak, like I'd been doing weights on my right side only.
I took a break for a while, and was grateful when this June rolled past without any extremely noticeable symptoms popping up. I went back to running in the fall and did the December marathon one more time. It was very difficult, and to be honest I shouldn't have run it at all. But I did, and if anything it just served to scare me. The week before the marathon I did a training run and ended up losing my coordination in my right leg. I could run, but it felt awkward and even walking took too much thought. This awkwardness has mostly gone away now, thankfully.
I have one last symptom that has come and gone. Fall of 2012 I noticed my voice got hoarse easily, and my throat would often feel tight, almost like someone was lightly choking me. This fall it returned, but I've had some trouble pronouncing words. I can do it, but it requires more effort than it should. It was bad near Christmas, and seems to come and go now if I talk a lot.
I've been afraid of ALS along with MS, although I'm a 26 year old female so I would think it's more reasonable to think MS than ALS (I try hard to convince myself, anyways!). The tremor and the vision issues help out with that some - I know those don't seem to come up in ALS. Some days I feel great, other days I honestly wonder why I keep going.
I've had a few other minor symptoms, which include:
- Extreme pain/soreness in both hands and feet
- Burning/tingling sensation in balls of feet
- Bad right-side lower back pain
- Pain and tightness in hips and in lower forearms
- Sensation of cold water on the back of my right leg
- Sensation of heat on my right shin
Like I stated earlier, I also twitch all over. Sometimes a lot, sometimes just a few.
Sorry for writing a novel, I know some people have trouble reading so I tried to break it up. If you got this far, I'm impressed! I really just typed all this out because I needed to vent, and I feel so alone in the real world right now. I hear my friends complain about all these external issues, and while I know everyone has their own problems, I constantly wish I had their normal external problems instead of my internal health ones. I'd give anything to feel strong and run hard again. I can run, but it is exhausting and frustrating.
Anyways... Thanks for listening.
I just got a promotion at my job, and it came with shiny new health insurance. So I'm searching for a doctor, I just haven't found one yet.
Hopefully I can get an answer soon, one way or another.
I've been to this message board off and on since June 2011, when my symptoms started. Hard to believe it's been almost three years. I'm not sure if anyone will read this, but I wanted to share my story anyways, because it's been a really hard road for me (as I'm sure it has been for everyone here!) and I feel like I've walked most of it alone. The people I've confided in have either written me off as a hypochondriac or have simply changed the subject.
A little bit about me first - I'm a 26 year old white female. I'm back in school, studying to be a Chemical Engineer. I work full time, love to run (if I can...) and I ride horses.
It started in June of 2011. I was texting and noticed that my thumb seemed to have a little trouble sliding across the screen to unlock my phone. I laughed at myself, thinking that I'd been texting too much. However, shortly after that I started getting twitches all throughout my body and the weird half-asleep weakness seemed to encompass my whole hand to the wrist. I could do everything normally, but it just seemed to feel weird.
Of course, I consulted Dr. Google and he told me I was dying. I proceeded to eat cookie dough and cry. Seriously. But then the symptoms seemed to subside, and I slowly decided I wasn't dying. I rode my horse like normal and actually trained for my first marathon that year (and qualified for Boston).
However, the following spring, a week before my third marathon, I woke up with a strangely sore hamstring. I didn't think much of it and it didn't really hinder my running. But a month later (June again) my vision went blurry and cloudy in my right eye. I completely freaked out and finally went to a doctor, who diagnosed me with some sort of infection, and although he admitted that it could be ON, he didn't think it was. I dutifully did the eyedrops and my vision cleared up completely after around six weeks, although it does occasionally seem to get a little blurry again ever since.
More worrisome was the tremor I developed in my arms at nearly the same time. It was worse in the right arm than the left, and was coupled with a feeling of weakness or strain in my triceps. It only showed up when I lowered my arm (as in a karate chop). I went to the doctor, who wrote me off as a whiny girl and told me it wasn't MS because I could walk fine. Didn't ever tell me why I had a tremor, and I was just happy to hear what I wanted to hear.
I struggled through that summer, held together by my horse more than anything. I ran another marathon that December, but by this point my hamstring was really starting to bother me - it felt weak and tired all the time. I ran the Boston Marathon in spring of 2013, but it was a struggle the whole way. My leg constantly felt tight and weak, like I'd been doing weights on my right side only.
I took a break for a while, and was grateful when this June rolled past without any extremely noticeable symptoms popping up. I went back to running in the fall and did the December marathon one more time. It was very difficult, and to be honest I shouldn't have run it at all. But I did, and if anything it just served to scare me. The week before the marathon I did a training run and ended up losing my coordination in my right leg. I could run, but it felt awkward and even walking took too much thought. This awkwardness has mostly gone away now, thankfully.
I have one last symptom that has come and gone. Fall of 2012 I noticed my voice got hoarse easily, and my throat would often feel tight, almost like someone was lightly choking me. This fall it returned, but I've had some trouble pronouncing words. I can do it, but it requires more effort than it should. It was bad near Christmas, and seems to come and go now if I talk a lot.
I've been afraid of ALS along with MS, although I'm a 26 year old female so I would think it's more reasonable to think MS than ALS (I try hard to convince myself, anyways!). The tremor and the vision issues help out with that some - I know those don't seem to come up in ALS. Some days I feel great, other days I honestly wonder why I keep going.
I've had a few other minor symptoms, which include:
- Extreme pain/soreness in both hands and feet
- Burning/tingling sensation in balls of feet
- Bad right-side lower back pain
- Pain and tightness in hips and in lower forearms
- Sensation of cold water on the back of my right leg
- Sensation of heat on my right shin
Like I stated earlier, I also twitch all over. Sometimes a lot, sometimes just a few.
Sorry for writing a novel, I know some people have trouble reading so I tried to break it up. If you got this far, I'm impressed! I really just typed all this out because I needed to vent, and I feel so alone in the real world right now. I hear my friends complain about all these external issues, and while I know everyone has their own problems, I constantly wish I had their normal external problems instead of my internal health ones. I'd give anything to feel strong and run hard again. I can run, but it is exhausting and frustrating.
Anyways... Thanks for listening.
I just got a promotion at my job, and it came with shiny new health insurance. So I'm searching for a doctor, I just haven't found one yet.Hopefully I can get an answer soon, one way or another.
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