ConcernedTeen
Member
- Joined
- Mar 27, 2018
- Messages
- 16
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- GA
- City
- Somewhere
Hello everyone. I posted on here 2 years ago and promised not to return unless I saw more doctors and my symptoms got worse. I believe that time has come, unfortunately. Here is a brief rundown of my sypmtoms.
March 2018
Twitches start everywhere, but mainly on right side of body. Arms, hands, legs, chest, diaphragm, face, feet, etc. Everywhere. Has not let up since that terrible day in march.
April 2018
See neuro who does emg of right arm and leg, comes back normal. Twitching stays.
May 2018
Right middle finger and ring finger are clinically weak (seen by doctor) can not use extender muscles to bring hand to 90 degrees (imagine a police man doing a "stop" motion with hands.) Schedules for emg
June 2018
Top neuro in my city does extrememly extensive EMG of those specifically weak muscles (right middle and index finger). Spend 20 minutes just telling me to move my hand with the needle in. Says "no evidence of neuromuscular disease, does not know reason for weakness"). I ask if the emg was clean, and he said its "normal". I insisted he clarify that it was "clean" but he never would. Just said its "good" and its "normal".
At this point I leave the forum and basically live a normal life for the next year, without too much progression in symptoms. I have to say, it made for a good year in life. But in summer 2019 my symptoms got noticably worse and I became worried again.
July 2019
My neck becomes stiff and my head slightly "tilts" to one side 24/7. Not really a big deal but some close friends pointed it out to me, wondering if something was wrong. This scared me. At this time i also notice my breathing is more labored at rest (although I can still do all my daily activities fine)
August 2019
EMG of back, neck, right arm, right leg. Neuro says no signs of neurodegenerative disease. Only a few fasciculations on the test, which the DR says is fine.
December 2019
Breathing is getting worse and feels much more restrictive when standing straight vs slouching. I have to concentrate to take a deep breath, it feels like a band is around my chest. This is 24/7, has not let up since, only gotten worse over time.
Get basic pulmonary test done by GP (Just breathing strength) FVC comes back at around 110%. Only tested sitting up.
Get EMG done by another neuro, very brief, just sticks needle in neck and back and said its all good.
Chest Xray, MRI, Inhaler, blood tests all done extensively and came back normal.
May 2020
Breathing has gotten worse over past several months, I run out of breath while talking normally, I have extremely labored breathing/shortness of breath after simply walking a few miles (used to be able to run with ease). Get extremely fatigued playing short amount of tennis, used to be able to play long matches in the sun only 2 years ago.
June 2020
Breathing has stayed bad and now my back hurts when standing up for only short amounts of time. It is really hard to stand straight. I have to rely on a backrest to relieve the pain, or lie down. This has me extremely frightened.
I can no longer take in a full breath while standing up straight. Schedule appt with pulm. doctor
Since onset of symptoms, my right side feels much weaker in both hands and feet (hands have been clinically proven), my breathing has gotten much worse, to the point where it impacts my daily life. My back feels extremely weak and twitches the most now, and none of my symptoms have let up since 2018.
My question is, how is it possible that I have proven weakness in my hands, extremely laboured breath with weak back, consistently for 2 years with normal EMG? My body has definitely been deteriorating for the past 2 years, if not ALS, are there any other diseases that can mimic this? It is becoming very difficult to breath in the past 7 months and I'm scared it will continue to get worse. Before this started, I was an active person. Now, at 20 years old (started when I was 18), my body feels like its giving up on me.
Could this potentially be a respiratory onset? I know it is rare, but I am genuinely concerned. I've read medical papers that state minimal limb involvement,widespread twitches, and shortness of breath or typical symptoms of this devestating onset.
I hope this is not the case, but I have to know so I can assess the future. I want nothing more than to graduate with my freinds and move on with my life.
March 2018
Twitches start everywhere, but mainly on right side of body. Arms, hands, legs, chest, diaphragm, face, feet, etc. Everywhere. Has not let up since that terrible day in march.
April 2018
See neuro who does emg of right arm and leg, comes back normal. Twitching stays.
May 2018
Right middle finger and ring finger are clinically weak (seen by doctor) can not use extender muscles to bring hand to 90 degrees (imagine a police man doing a "stop" motion with hands.) Schedules for emg
June 2018
Top neuro in my city does extrememly extensive EMG of those specifically weak muscles (right middle and index finger). Spend 20 minutes just telling me to move my hand with the needle in. Says "no evidence of neuromuscular disease, does not know reason for weakness"). I ask if the emg was clean, and he said its "normal". I insisted he clarify that it was "clean" but he never would. Just said its "good" and its "normal".
At this point I leave the forum and basically live a normal life for the next year, without too much progression in symptoms. I have to say, it made for a good year in life. But in summer 2019 my symptoms got noticably worse and I became worried again.
July 2019
My neck becomes stiff and my head slightly "tilts" to one side 24/7. Not really a big deal but some close friends pointed it out to me, wondering if something was wrong. This scared me. At this time i also notice my breathing is more labored at rest (although I can still do all my daily activities fine)
August 2019
EMG of back, neck, right arm, right leg. Neuro says no signs of neurodegenerative disease. Only a few fasciculations on the test, which the DR says is fine.
December 2019
Breathing is getting worse and feels much more restrictive when standing straight vs slouching. I have to concentrate to take a deep breath, it feels like a band is around my chest. This is 24/7, has not let up since, only gotten worse over time.
Get basic pulmonary test done by GP (Just breathing strength) FVC comes back at around 110%. Only tested sitting up.
Get EMG done by another neuro, very brief, just sticks needle in neck and back and said its all good.
Chest Xray, MRI, Inhaler, blood tests all done extensively and came back normal.
May 2020
Breathing has gotten worse over past several months, I run out of breath while talking normally, I have extremely labored breathing/shortness of breath after simply walking a few miles (used to be able to run with ease). Get extremely fatigued playing short amount of tennis, used to be able to play long matches in the sun only 2 years ago.
June 2020
Breathing has stayed bad and now my back hurts when standing up for only short amounts of time. It is really hard to stand straight. I have to rely on a backrest to relieve the pain, or lie down. This has me extremely frightened.
I can no longer take in a full breath while standing up straight. Schedule appt with pulm. doctor
Since onset of symptoms, my right side feels much weaker in both hands and feet (hands have been clinically proven), my breathing has gotten much worse, to the point where it impacts my daily life. My back feels extremely weak and twitches the most now, and none of my symptoms have let up since 2018.
My question is, how is it possible that I have proven weakness in my hands, extremely laboured breath with weak back, consistently for 2 years with normal EMG? My body has definitely been deteriorating for the past 2 years, if not ALS, are there any other diseases that can mimic this? It is becoming very difficult to breath in the past 7 months and I'm scared it will continue to get worse. Before this started, I was an active person. Now, at 20 years old (started when I was 18), my body feels like its giving up on me.
Could this potentially be a respiratory onset? I know it is rare, but I am genuinely concerned. I've read medical papers that state minimal limb involvement,widespread twitches, and shortness of breath or typical symptoms of this devestating onset.
I hope this is not the case, but I have to know so I can assess the future. I want nothing more than to graduate with my freinds and move on with my life.