ConcernedTeen
Member
- Joined
- Mar 27, 2018
- Messages
- 16
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- GA
- City
- Somewhere
Hello all, some of you may remember I made a post about a month ago concerning my symptoms. That thread is now closed but I will summarize everything here. My concern is that I have been having very concerning symptoms the past 2 months and I am worried about my health. I will break down everything I have observed since my symptoms began into 3 categories below and hopefully you all will be able to give me advice on what you think is going on. Here goes:
Symptoms that make me fear ALS:
-Frequent Twitching, with good blood tests, clean MRI of Brain and Neck, no recent change in diet, nutrition, or stress/anxiety
-Twitching is widespread, but typically focuses on my right arm and leg. In the past week, one spot on my right calf has been consistently twitching and sometimes feels like a buzzing/vibration.
-Twitching of internal body parts, such as diaphragm. I don't know if this is common with BFS, as that only affects voluntary muscle groups.
-Shortness of breath: This is new. Since this problem appeared in the past week, it has been consistent. Most noticable when I am lying down or sitting. When I am walking around it is typically not a problem. Has not gotten better for even one day since I noticed it. Possible diaphragm weakness?
-Stiff hand: This has been a problem for about a month. My right hand (mostly thumb) feels tight when moving it about and reverts to a more bent position than left thumb when resting. I have never really paid attention to my thumbs like this before so maybe it was always like this?
Reasons could be good or bad
-Right side weakness: As I said in my last post, I have been feeling weaker on the right side since this all started. Now, I know ALS is about failing, not feeling, and I can still walk on my toes on the right foot, although it seems to be more difficult than the other foot. One month ago I also posted about my right leg being harder to balance on. This still remains true, but has not appeared to worsen since I noticed it 6 weeks ago. If it was ALS, would this issue become worse in 6 weeks?
-My right arm twitches a lot as well, and fatigues much quicker than my left arm. For example, when I do push-ups, my right arm feels completely exhausted afterwards while my left arm is relatively fine.
-Cracking joints, mainly on right side. When I flex muscles in my right arm and hand, I can hear things snapping and such. I've never noticed this before, it appeared the same time as the twitching. Should I be concerned? I also get this in my right toes.
-Still have slight temors in my hands when holding an object like my phone. Have had these for 2 months.
-My stomach seems to pulse along with my heart now. Like, I can see my stomach contract with my heartbeat, very slightly and quickly. This popped up around the same time as the twitching. I've never had this before in my life. It is 24/7. I have no idea what this means.
Things that point away from ALS
-Normal EMG of right foot, right leg, right hand, right arm, back, and neck. Not much else to say about this one.
-Reflexes: At first neuro visit, my legs had a brisk reflex when tapped on the knee, this was bilateral. When at a 2nd neuro he also tested my reflexes in the knee, elbow, and few other places. This time, my leg didn't shoot up and only kicked up slightly. He said it was normal. My question is - would someone with ALS forever have brisk relflexes for as long as they had movement in the muscle? Apparently my legs were not hyperreflexive this time. GP also tested babinski and that was negative/normal. Self tested hoffman and apparently is negative.
-Two neuros have told me "nothing is seriously wrong with me" despite all the physical issues I am having. My guess is that they do not really have an explanation for what is going on.
Basically, at this point, I am concerned about a possible respiratory onset. Yes I know the chances are slim, as it is a very rare form of a rare disease. But what continues to concern me are the widespread twitching and shortness of breath, which are hallmark of respiratory onset. Could a normal EMG in just the right limbs, neck, and back rule this out? I will tell my neuro about this in my follow up in two weeks and try to get an EMG of diaphragm. The consistent twitching and buzzing feeling on my right leg and arm also worries me a lot.
At this point, I think it's safe to say that all these symptoms are strictly physical. Mentally, despite these issues, I have been doing my best to enjoy my final semester of high school. I have no more stress/pressure concerning getting good grades as I've already been accepted to college. I've been sleeping a healthy amount now and have never had a history of anxiety in my life.
Also, I've found similar threads before with people around my age (maybe 5-10 years older) expressing similar symptoms. I will link them here. Does anyone know how they ended up? I can't seem to find follow ups to their posts.
https://www.alsforums.com/forum/do-i-have-als-als/31258-respiratory-bulbar-onset.html
https://www.alsforums.com/forum/do-i-have-als-als/38740-emg-tomorrow.html
https://www.alsforums.com/forum/do-i-have-als-als/40417-i-believe-i-have-respiratory-onset-als.html
Thank you for taking the time to read my post, seriously. I'm starting to get worried/frustrated that my symptoms aren't giving me a break. Thoughts?
Symptoms that make me fear ALS:
-Frequent Twitching, with good blood tests, clean MRI of Brain and Neck, no recent change in diet, nutrition, or stress/anxiety
-Twitching is widespread, but typically focuses on my right arm and leg. In the past week, one spot on my right calf has been consistently twitching and sometimes feels like a buzzing/vibration.
-Twitching of internal body parts, such as diaphragm. I don't know if this is common with BFS, as that only affects voluntary muscle groups.
-Shortness of breath: This is new. Since this problem appeared in the past week, it has been consistent. Most noticable when I am lying down or sitting. When I am walking around it is typically not a problem. Has not gotten better for even one day since I noticed it. Possible diaphragm weakness?
-Stiff hand: This has been a problem for about a month. My right hand (mostly thumb) feels tight when moving it about and reverts to a more bent position than left thumb when resting. I have never really paid attention to my thumbs like this before so maybe it was always like this?
Reasons could be good or bad
-Right side weakness: As I said in my last post, I have been feeling weaker on the right side since this all started. Now, I know ALS is about failing, not feeling, and I can still walk on my toes on the right foot, although it seems to be more difficult than the other foot. One month ago I also posted about my right leg being harder to balance on. This still remains true, but has not appeared to worsen since I noticed it 6 weeks ago. If it was ALS, would this issue become worse in 6 weeks?
-My right arm twitches a lot as well, and fatigues much quicker than my left arm. For example, when I do push-ups, my right arm feels completely exhausted afterwards while my left arm is relatively fine.
-Cracking joints, mainly on right side. When I flex muscles in my right arm and hand, I can hear things snapping and such. I've never noticed this before, it appeared the same time as the twitching. Should I be concerned? I also get this in my right toes.
-Still have slight temors in my hands when holding an object like my phone. Have had these for 2 months.
-My stomach seems to pulse along with my heart now. Like, I can see my stomach contract with my heartbeat, very slightly and quickly. This popped up around the same time as the twitching. I've never had this before in my life. It is 24/7. I have no idea what this means.
Things that point away from ALS
-Normal EMG of right foot, right leg, right hand, right arm, back, and neck. Not much else to say about this one.
-Reflexes: At first neuro visit, my legs had a brisk reflex when tapped on the knee, this was bilateral. When at a 2nd neuro he also tested my reflexes in the knee, elbow, and few other places. This time, my leg didn't shoot up and only kicked up slightly. He said it was normal. My question is - would someone with ALS forever have brisk relflexes for as long as they had movement in the muscle? Apparently my legs were not hyperreflexive this time. GP also tested babinski and that was negative/normal. Self tested hoffman and apparently is negative.
-Two neuros have told me "nothing is seriously wrong with me" despite all the physical issues I am having. My guess is that they do not really have an explanation for what is going on.
Basically, at this point, I am concerned about a possible respiratory onset. Yes I know the chances are slim, as it is a very rare form of a rare disease. But what continues to concern me are the widespread twitching and shortness of breath, which are hallmark of respiratory onset. Could a normal EMG in just the right limbs, neck, and back rule this out? I will tell my neuro about this in my follow up in two weeks and try to get an EMG of diaphragm. The consistent twitching and buzzing feeling on my right leg and arm also worries me a lot.
At this point, I think it's safe to say that all these symptoms are strictly physical. Mentally, despite these issues, I have been doing my best to enjoy my final semester of high school. I have no more stress/pressure concerning getting good grades as I've already been accepted to college. I've been sleeping a healthy amount now and have never had a history of anxiety in my life.
Also, I've found similar threads before with people around my age (maybe 5-10 years older) expressing similar symptoms. I will link them here. Does anyone know how they ended up? I can't seem to find follow ups to their posts.
https://www.alsforums.com/forum/do-i-have-als-als/31258-respiratory-bulbar-onset.html
https://www.alsforums.com/forum/do-i-have-als-als/38740-emg-tomorrow.html
https://www.alsforums.com/forum/do-i-have-als-als/40417-i-believe-i-have-respiratory-onset-als.html
Thank you for taking the time to read my post, seriously. I'm starting to get worried/frustrated that my symptoms aren't giving me a break. Thoughts?