TypicallyAnxious
New member
- Joined
- May 3, 2015
- Messages
- 2
- Reason
- Learn about ALS
- Country
- US
- State
- DC
- City
- Washington
Hello all,
I am a 33 (nearly 34) year old male, 6'3" 175 lbs. About a year ago, I started cramping quite frequently in my feet, occasionally in my calf. Around the same time, I had several sleepless nights as a result of hypnic jerk/myoclonus. Throughout the year, I had pretty regular migraines. Other than these symptoms, not much was going on. Then I moved and things started happening.
In January, I started to wake up several times a night because one of my arms had fallen asleep (usually completely numb, but occasionally only in my pinky and ring finger). This has not stopped to this day. Although they usually do not fall asleep during the day, my shoulders are almost always sore down through my biceps. I also began to notice my feet falling asleep/feeling like pins and needles and getting extremely cold. My PCP ordered a blood test and did very basic weakness tests (nothing indicated from either) and referred me to a neurologist. The neurologist administered an EMG/NCV on 3/3/15 (all normal or negative) and referred me to a rheumatologist who ran tests for Lyme, RA, etc. (all negative). I also had MRIs of my brain, C and T spine, and brachial plexus (all normal) and a sleep study (normal). I was mostly still just annoyed with my symptoms, but quite satisfied that it was at least something that had not been tested for.
Then, at the end of March, I began to notice my butt muscles would twitch rapidly when I sat down after walking a few miles. My arms continued to feel more sore (I read the brilliant posts here about clinical weakness and do not think I have experienced any in my arms; it basically feels like I got a tetanus shot in both shoulders). I also started to notice that my jaw would get very tired from chewing. Over a couple of weeks, some real twitching started. My butt muscles now twitch almost constantly (sometimes lightly, sometimes thumping). I experience generalized twitching lots of other places (shoulder blades and thighs/quads regularly; neck, shin, obliques sporadically). I told my neurologist and he checked a couple reflexes and said he wanted to do another EMG. This, of course, worried me a lot.
Then, a few weeks ago, I developed the feeling that something was in my throat. For a short while it actually felt like it was buzzing. I have occasionally snored so loud that my uvula was swollen, so I just attributed it to that. However, it hasn't gotten better. Yesterday I did some googling and saw some pictures and videos of soft palate problems associated with nerve damage. Lo and behold, when I shined a light on my throat the left side of my soft palate is noticeably lower than the right. In fact, I don't think it moves at all. This is consistent with the sensation I've been having that something is stuck in the left side of my throat. My voice is somewhat hoarse and I am constantly trying to clear it. I am having trouble singing. I have had a couple of large calcium pills gets stuck in the top of my throat and it's difficult to even force them down with anything but a lot of food. I also have lost 6 pounds in the last week.
I would love some opinions on this. I am mostly worried about this soft palate issue (I am not one to second guess medical diagnoses---especially good news like I got from the EMG and MRIs---I just wanted to paint a good picture). Does this sound like bulbar onset to anyone?
This forum is a great service and I really appreciate everyone on it. Thanks very much,
David
I am a 33 (nearly 34) year old male, 6'3" 175 lbs. About a year ago, I started cramping quite frequently in my feet, occasionally in my calf. Around the same time, I had several sleepless nights as a result of hypnic jerk/myoclonus. Throughout the year, I had pretty regular migraines. Other than these symptoms, not much was going on. Then I moved and things started happening.
In January, I started to wake up several times a night because one of my arms had fallen asleep (usually completely numb, but occasionally only in my pinky and ring finger). This has not stopped to this day. Although they usually do not fall asleep during the day, my shoulders are almost always sore down through my biceps. I also began to notice my feet falling asleep/feeling like pins and needles and getting extremely cold. My PCP ordered a blood test and did very basic weakness tests (nothing indicated from either) and referred me to a neurologist. The neurologist administered an EMG/NCV on 3/3/15 (all normal or negative) and referred me to a rheumatologist who ran tests for Lyme, RA, etc. (all negative). I also had MRIs of my brain, C and T spine, and brachial plexus (all normal) and a sleep study (normal). I was mostly still just annoyed with my symptoms, but quite satisfied that it was at least something that had not been tested for.
Then, at the end of March, I began to notice my butt muscles would twitch rapidly when I sat down after walking a few miles. My arms continued to feel more sore (I read the brilliant posts here about clinical weakness and do not think I have experienced any in my arms; it basically feels like I got a tetanus shot in both shoulders). I also started to notice that my jaw would get very tired from chewing. Over a couple of weeks, some real twitching started. My butt muscles now twitch almost constantly (sometimes lightly, sometimes thumping). I experience generalized twitching lots of other places (shoulder blades and thighs/quads regularly; neck, shin, obliques sporadically). I told my neurologist and he checked a couple reflexes and said he wanted to do another EMG. This, of course, worried me a lot.
Then, a few weeks ago, I developed the feeling that something was in my throat. For a short while it actually felt like it was buzzing. I have occasionally snored so loud that my uvula was swollen, so I just attributed it to that. However, it hasn't gotten better. Yesterday I did some googling and saw some pictures and videos of soft palate problems associated with nerve damage. Lo and behold, when I shined a light on my throat the left side of my soft palate is noticeably lower than the right. In fact, I don't think it moves at all. This is consistent with the sensation I've been having that something is stuck in the left side of my throat. My voice is somewhat hoarse and I am constantly trying to clear it. I am having trouble singing. I have had a couple of large calcium pills gets stuck in the top of my throat and it's difficult to even force them down with anything but a lot of food. I also have lost 6 pounds in the last week.
I would love some opinions on this. I am mostly worried about this soft palate issue (I am not one to second guess medical diagnoses---especially good news like I got from the EMG and MRIs---I just wanted to paint a good picture). Does this sound like bulbar onset to anyone?
This forum is a great service and I really appreciate everyone on it. Thanks very much,
David
