Status
Not open for further replies.

ConcernedTeen

Member
Joined
Mar 27, 2018
Messages
14
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?
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,236
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Mod note: For anyone who wishes to respond to this post, please refer to their old thread first to see discussion.
https://www.alsforums.com/forum/do-...remely-concerned-worried-about-my-future.html

Have you been to a doctor as advised the last time you visited here? Have you visited with a counselor?
If you have not, you have not done as recommended by many people in your last thread. Please post nothing more till this happens and you are actually reporting new information.

If the neuros you have spoken to (not sure how recent this is) don't have any idea what is wrong with you, it's likely because you do not have a neurological problem. Doctors do not say nothing at all if they don't know what is wrong- they would continue to look until they find something- but only if they think something is seriously wrong.

I still see a person who has convinced them-self they have ALS and are unable to accept they do not despite the many people who have provided you feedback and professional care:
2 neuros
general practitioner (s)
people with ALS
medically trained people with ALS
caregivers for people with ALS
caregivers for people who have ALS AND who are medically trained



Regardless of your physical symptoms, what are you doing to seek emotional support? Are you seeing a counselor, as advised? A counselor/therapist can be a huge asset when looking for medical answers and can provide support and even advocate for you with medical professionals if they feel you are in need. Do not reject this facet of necessary care. You may find they provide a faster pathway to diagnosis and the correct specialist care. Why spend time on a forum when you can receive real, in person, quality professional care from someone who can actually do something for you. Strangers on the internet can't do that. Nor can they help you diagnose yourself with a rare expression of a very rare neurological disease.
 

ConcernedTeen

Member
Joined
Mar 27, 2018
Messages
14
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Somewhere
Thank you for the reply.
Yes I have been to a doctor since that last post. I went to a 2nd neuro while visiting my grandparents in another state, about a week after the post (04/06). He tested reflexes, made me do a squat, and looked at the previous EMG report. That was it. Then he said you're too young to have a problem like this and sent me on my way.
As for emotional support, I have been talking to my school counsoler. She I've talked to her for about 4-5 hours between a few seperate occasions. She listened to all my concerns and after a lot of conversing finally said that I should only stop seeing doctos once I start feeling better. Which I have not been. She agrees with me that the issues are not in my head and are physical.

The shortness of breath is new information. I didn't notice that symptom at the time of my last post but now I have it consistently alongside widespread twitching. Can an EMG of the limbs and back and neck rule out respiratory ALS? or just limb onset. I have no swallowing problems or issues with speaking as of now.
I'm not trying to be a bother; I would just like to know another perspective on my symptoms.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,236
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
As you've been advised by everyone here, and backed up by your school counselor, continue seeing doctors in person. No one is denying you have physical symptoms- only that you do not fit the symptom pattern of ALS for a whole variety of different reasons.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,294
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Yes, the EMG of your back, neck and R arm/leg would have revealed nerve damage that would have to be present for you to have breathing problems due to ALS. Think about all the muscles that move when you breathe.

I'm not sure where you stand relative to weight, exercise and diet, but those are all things to consider when feeling short of breath. As with some of your other symptoms like twitching, it is very common to notice something once and then it feeds on itself.

When you're engaging in something that requires physical effort, many of us feel short of breath. And if your body is twitching a lot, it's using energy that your body might like to have back. So you might look into what can help you twitch less/feel better, from tai chi to massage to a long walk somewhere peaceful.

You do not have ALS, fortunately. You sound like you are on a great path apart from your anxiety, so please continue to talk to the counselor and whoever she may recommend. You do not need an EMG on your chest from what you report, so I hope you'll resist that temptation and focus on what can help you move forward.

Best,
Laurie
 

ConcernedTeen

Member
Joined
Mar 27, 2018
Messages
14
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
City
Somewhere
ShiftKicker and Laurie, thank you for your replies!

I've now decided it's best for me to take the advice from everyone on this forum and move on from worring about ALS. With the daily incessant twitching and constant "perceived" weakness I cannot deny that I have something physically wrong with me now but many experienced people have been telling me its not ALS and I will have to trust that. I will not return to this forum unless there comes a day where I can physically not do something. To all who have ever replied to my posts, thank you for being patient with me.

All the best,
Teen
 
Status
Not open for further replies.
Top