Georgi88
New member
- Joined
- Aug 19, 2020
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- BG
- State
- VT
- City
- Svishtov
Hello everyone,
My name is George
I would like to describe my situation and I would be very grateful for opinions. Sorry for my English, it's not perfect.
I was completely fine until April 2020 , but suddenly I started to feel generally week and my palms and feet was feeling swollen. I was started to wake up suddenly at night , like I had no breath. Started to sleep everyone afternoon (never did that before) Every time when I was waking up my fingers on left hand was numb. I didn't show attention in beginning, but started to have pain in my forearm. After 2 weeks this started to happen to my right hand. From then both forearm are stiff and feel pain when trying to hold something. I lost my grip power. Still didn't give attention. Then I started to feel strange feeling on my left foot when I was stepping. Two weeks later the same on the right foot. Now I still have this feeling of muscle stretching under the feet. Then decided to go to neurologist. She sent me to MRI on brain for MS. MRI was clean. Blood full test clean (electrolytes, vitamins, thyroid hormones, everything) , except higher IgE around 400 ( normal 0-100). I was sent to NCS - it showed ulnar nerve problems in both hands, more on left side. Everything OK , but I started to have muscle twitching first at the legs and now absolutely everywhere on my body. Especially after doing some effort, seconds after I had twitching on that muscle that I used. Still was not worried, but suddenly I started to feel weekness in chewing. How to explain it - in middle of chewing like the muscle was overused. Like stiff. It started to become more difficult and more. Now even when I wake up I feel the stiffness on my face, cheeks. Then I decided to go on neurological hospital for full tests. MRI on cervical spine - multiple stenosis from C3 to C7 and T1. The doctors said it's not that bad, I shouldn't experience those issues according to him. Then EMG and NCS on 14-15 muscle plus on the tongue and cheeks (masseter). No spontaneous activity, Normal amplitudes and the rest. No evidence of active denervation. NCS - again froblem in ulnar and median nerves and frolonged F waves on those nerves. They told me nothing to worry about Als, SMA, Siryngobulbia.
ENT neurological found only small problem with vocal chords on right side in respiration, maybe little atrophy on side of the tongue , but not sure.
I went home , but still had problems - with sleep( only 3-4 hours per night) , when I lay down I feel I am not breathing normal, like snoring, feeling, I wake up and a lot of saliva on the pillow.
I went again to neurologist - she saw atrophy on left shoulder, left hand, left forearm and on my left hand you can see the ligament near the thumb. On right foot slight atrophy - the dent is visible and the ligaments. She agreed on that.
She decided to make another test for Stiff man syndrome. Needle EMG on biceps brahii and rectus femoris ( on the leg . Both on left side. The biceps OK - MUAPs, duration and recruitment in normal range, no polyphasia. On rectus femoris - prolonged MUAPs - minimum 448, maximum 5880, mean around 3300. The normal should be 750. On both muscles no spontaneous activity. Even , if I saw this big difference in rectus femoris, she said - please calm down, it's not ALS. I don know what to think anymore. It says, that in ALS there is no pain , but I feel little pain when I use my hands , when I step on my feet, I also think start to speak little bit differently ( I work on microphone and sing and I realize it , maybe from anxiety, I don't know anymore) . She told me to take Diazepam - the Truth is that this feeling of tightness and problem with chewing improved a little, I sleep better.
Just I wanted opinion from people , who know more things about MND . I believe my doctors, just I am worried.
Some questions:
1) If it was bulbar - is it possible chewing to be affected before, slurred speach ( because I hear it, but not the others. Maybe in my mind)
2) If there is no spontaneous activity found, should I worry for those abnormalities in MUAPs of rectus femoris
3) If I have bulbar ( I say IF ) , should be detected also in another muscles of the body, especially when I say that I lost muscles on left side.
Sorry for the long message. I say again - I trust my doctors, but always is good to have opinion from people , who know better this disease.
P.S I hope everything will be fine with me and even if I have good or bad news .... I will help how I can guys. I have many connections, with very very famous people. I work as manager at strong International company. One example - Grigor Dimitrov ( top 20 tennis player) I will do my best to convince many people to donate for the finding of cure not only ALS , but all MND diseases. That's what I can do with my position.
I hope to receive some opinions. Good or bad, everything I appreciate. I am not crazy, just worried.
My name is George
I would like to describe my situation and I would be very grateful for opinions. Sorry for my English, it's not perfect.
I was completely fine until April 2020 , but suddenly I started to feel generally week and my palms and feet was feeling swollen. I was started to wake up suddenly at night , like I had no breath. Started to sleep everyone afternoon (never did that before) Every time when I was waking up my fingers on left hand was numb. I didn't show attention in beginning, but started to have pain in my forearm. After 2 weeks this started to happen to my right hand. From then both forearm are stiff and feel pain when trying to hold something. I lost my grip power. Still didn't give attention. Then I started to feel strange feeling on my left foot when I was stepping. Two weeks later the same on the right foot. Now I still have this feeling of muscle stretching under the feet. Then decided to go to neurologist. She sent me to MRI on brain for MS. MRI was clean. Blood full test clean (electrolytes, vitamins, thyroid hormones, everything) , except higher IgE around 400 ( normal 0-100). I was sent to NCS - it showed ulnar nerve problems in both hands, more on left side. Everything OK , but I started to have muscle twitching first at the legs and now absolutely everywhere on my body. Especially after doing some effort, seconds after I had twitching on that muscle that I used. Still was not worried, but suddenly I started to feel weekness in chewing. How to explain it - in middle of chewing like the muscle was overused. Like stiff. It started to become more difficult and more. Now even when I wake up I feel the stiffness on my face, cheeks. Then I decided to go on neurological hospital for full tests. MRI on cervical spine - multiple stenosis from C3 to C7 and T1. The doctors said it's not that bad, I shouldn't experience those issues according to him. Then EMG and NCS on 14-15 muscle plus on the tongue and cheeks (masseter). No spontaneous activity, Normal amplitudes and the rest. No evidence of active denervation. NCS - again froblem in ulnar and median nerves and frolonged F waves on those nerves. They told me nothing to worry about Als, SMA, Siryngobulbia.
ENT neurological found only small problem with vocal chords on right side in respiration, maybe little atrophy on side of the tongue , but not sure.
I went home , but still had problems - with sleep( only 3-4 hours per night) , when I lay down I feel I am not breathing normal, like snoring, feeling, I wake up and a lot of saliva on the pillow.
I went again to neurologist - she saw atrophy on left shoulder, left hand, left forearm and on my left hand you can see the ligament near the thumb. On right foot slight atrophy - the dent is visible and the ligaments. She agreed on that.
She decided to make another test for Stiff man syndrome. Needle EMG on biceps brahii and rectus femoris ( on the leg . Both on left side. The biceps OK - MUAPs, duration and recruitment in normal range, no polyphasia. On rectus femoris - prolonged MUAPs - minimum 448, maximum 5880, mean around 3300. The normal should be 750. On both muscles no spontaneous activity. Even , if I saw this big difference in rectus femoris, she said - please calm down, it's not ALS. I don know what to think anymore. It says, that in ALS there is no pain , but I feel little pain when I use my hands , when I step on my feet, I also think start to speak little bit differently ( I work on microphone and sing and I realize it , maybe from anxiety, I don't know anymore) . She told me to take Diazepam - the Truth is that this feeling of tightness and problem with chewing improved a little, I sleep better.
Just I wanted opinion from people , who know more things about MND . I believe my doctors, just I am worried.
Some questions:
1) If it was bulbar - is it possible chewing to be affected before, slurred speach ( because I hear it, but not the others. Maybe in my mind)
2) If there is no spontaneous activity found, should I worry for those abnormalities in MUAPs of rectus femoris
3) If I have bulbar ( I say IF ) , should be detected also in another muscles of the body, especially when I say that I lost muscles on left side.
Sorry for the long message. I say again - I trust my doctors, but always is good to have opinion from people , who know better this disease.
P.S I hope everything will be fine with me and even if I have good or bad news .... I will help how I can guys. I have many connections, with very very famous people. I work as manager at strong International company. One example - Grigor Dimitrov ( top 20 tennis player) I will do my best to convince many people to donate for the finding of cure not only ALS , but all MND diseases. That's what I can do with my position.
I hope to receive some opinions. Good or bad, everything I appreciate. I am not crazy, just worried.
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