Let me just start with saying my heart goes out to all that has been affected by this terrible disease. The reason that I am here is that I have been going through some disturbing changes over the last few months and I would like to get everyone’s opinion on my symptoms. I have written down my symptoms as they started showing up and the steps I have taken to find out why these things are happening. Also i have expressed my concerns about ALS to my Neurologist and even before the EMG test were done and after the initial exam was done he told me that i shouldn't be concerned about ALS, but i can't seem to shake the feeling that i might.
July- Came down with pneumonia. Weight went from 175 to 160. Regained weight up to 170.
- Eye sight problem started while recovering from pneumonia.
September/October- Started my perceived problem with my speech.
- Felt fatigued and both knees started to feel weak.
- Shortness of breath.
October
- Lightheaded when turning too fast or standing up too quickly.
- Appetite changed. Feel hungry but nauseous when I eat. Losing weight. 170 to 162
- Ringing in ears, been there for a long time but now sensitive to high pitch sounds.
- All over body twitches.
November- Developing sleep disorder. Waking up after 4 to 5 hours of sleep.
- Joints are starting to ache. (Wrists, elbow, ankles).
- Muscle twitching has slowed considerably. But I have what feels like a vibration to the inside of my right heel now.
- My appetite changes throughout the day. More hungry and less nauseous in the afternoon and evening. Weight now at 165.
- Still have my perceived problem with my speech. Feels like it has gotten worse over the last few weeks. Still no one is noticing. “TH” & “S” appear to be the problem. Tongue feels weird. Like I don’t know what position it should be in when it’s resting.
- Weakness in knees still has not subsided; has not gotten worse. Calf and hamstrings muscles feel sore; soreness stays for a couple days and then nothing for a few weeks. Numbing pain in both heals; comes and goes.
- Still have shortness of breath. Same as initial symptom.
- Balance still a problem. More frequent than before.
- Face twitches when I smile too long.
- Sharp stabbing pain in left knee. (started back before all other symptoms, comes and goes)
PCP - ordered a brain MRI and chest x-ray. Both came back NORMAL.
Neurologist - Had blood work done. Came back NORMAL.
-Had EMG done of right arm and leg, came back NORMAL, neurological exam done-NORMAL.
ENT-Hearing test done. Hearing is fine (no loss of hearing but have Tinnitus).
-Had a balance test done for possible inner ear problem. Balance test came back normal; lightheadedness has nothing to do with an inner ear problem.
-Had a videostrobe by an ENT - NORMAL.
Opthalmologist -Saw an eye movement specialist. Told I have a convergence insufficiency problem.
I would really like to hear what everyone thinks. Thank You.
July- Came down with pneumonia. Weight went from 175 to 160. Regained weight up to 170.
- Eye sight problem started while recovering from pneumonia.
September/October- Started my perceived problem with my speech.
- Felt fatigued and both knees started to feel weak.
- Shortness of breath.
October
- Lightheaded when turning too fast or standing up too quickly.
- Appetite changed. Feel hungry but nauseous when I eat. Losing weight. 170 to 162
- Ringing in ears, been there for a long time but now sensitive to high pitch sounds.
- All over body twitches.
November- Developing sleep disorder. Waking up after 4 to 5 hours of sleep.
- Joints are starting to ache. (Wrists, elbow, ankles).
- Muscle twitching has slowed considerably. But I have what feels like a vibration to the inside of my right heel now.
- My appetite changes throughout the day. More hungry and less nauseous in the afternoon and evening. Weight now at 165.
- Still have my perceived problem with my speech. Feels like it has gotten worse over the last few weeks. Still no one is noticing. “TH” & “S” appear to be the problem. Tongue feels weird. Like I don’t know what position it should be in when it’s resting.
- Weakness in knees still has not subsided; has not gotten worse. Calf and hamstrings muscles feel sore; soreness stays for a couple days and then nothing for a few weeks. Numbing pain in both heals; comes and goes.
- Still have shortness of breath. Same as initial symptom.
- Balance still a problem. More frequent than before.
- Face twitches when I smile too long.
- Sharp stabbing pain in left knee. (started back before all other symptoms, comes and goes)
PCP - ordered a brain MRI and chest x-ray. Both came back NORMAL.
Neurologist - Had blood work done. Came back NORMAL.
-Had EMG done of right arm and leg, came back NORMAL, neurological exam done-NORMAL.
ENT-Hearing test done. Hearing is fine (no loss of hearing but have Tinnitus).
-Had a balance test done for possible inner ear problem. Balance test came back normal; lightheadedness has nothing to do with an inner ear problem.
-Had a videostrobe by an ENT - NORMAL.
Opthalmologist -Saw an eye movement specialist. Told I have a convergence insufficiency problem.
I would really like to hear what everyone thinks. Thank You.