Leo_Rain
New member
- Joined
- Sep 20, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FI
- City
- Helsinki
Hi all, and greetings from Finland. Since this is probably the most popular forum regarding ALS, I thought I'd give it a shot and see if anyone here has felt something similar what I have.
I'll list here my symptoms and how my condition has progressed:
November 2020:
My left eyelid started to feel a bit 'heavy' in the morning. When I looked in the mirror, I noticed it was mildly drooping when I woke up (from time-to-time), but during the day the sensation went away.
December 2020:
I started to have problems in bathroom. Every time after peeing, there were some drops of urine in my underwear. No matter how properly I 'shook' the problem didn't go away. I saw a urologist about this and he said that my muscles down there were too tight and that was causing the problem. No infection, no prostate problems, just the muscles.
January 2021:
Feeling slight numbness on the left side of my face and headaches on the left side also.
February 2021:
Within two days: my left hand's fingers stopped working properly during typing as if the hand's muscles were cramping/moving slowly a bit (no pain). At the same time I noticed this strange feeling on the whole left side of my body (from face to shoulder, hand, ribs etc.). It felt like numbness/slight weakness but without tingling sensation. I got to ER and they did MRI on my head and neck. Everything's fine.
March 2021:
My left arm's and leg's muscles went super tight all of a sudden as if I'd done a huge workout. I tried everything to ease the tightness, but it didn't go away. I started to have muscle twitches all over my body. My left leg felt a bit strange when walking (as if I was walking on a pillow). My left arm started to feel weak from the shoulder and my hand's fingers got tired easily when I was writing or playing guitar. I went to see a neurologist and demanded an EMG/NCS. It was clean. My blood tests showed high CK and LD levels, but after 2 weeks time they were normal again.
All of a sudden I started to get weird breathing problems: I couldn't get a deep breath any more. I could still run, sing and exercise, but every time afterwards I couldn't take a deep breath. My diaphragm started to feel 'stiff' and I needed to massage it a lot. Sometimes this problem would go on for weeks, then go away and then, if I went E.G. singing, it came back the next day.
I couldn't sleep properly anymore. I would wake up gasping for air and my dreams started to feel super-vivid. My arms felt heavy every time I woke up.
April 2021:
From Feb to April I lost about 22 pounds and for some reason started to feel super hungry. I needed to eat basically every second hour large amounts of food (sometimes even during the night). Still I felt like I wasn't gaining weight (my arms and chest looked super skinny for the first time in my life). After a month or so I started to gain weight again, but the excess appetite stayed. Because of the hunger my stomach started to look like Buddha's belly.
Did a new EMG/NCS again (both legs and arms, face + repetition test (Myasthenia Gravis test)). This time they found mild myopathy in most of the muscles, but no signs of MND. In the paper it says: polyphasic, short-duration low-amplitude motor unit action potentials. The neurologist wasn't worried, she said that she's seen a lot of these and they don't necessarily mean anything.
May-August:
Breathing difficulties: couldn't get a deep breath. Acid reflux all the time and none of the medication helped. Had slight swallowing difficulties and had a gastroscopy and found out that my esophagus was some what atonic. Went onto an X-Ray test of swallowing that came back normal. Did a third EMG/NCS: slight myopathy in some muscles, but no signs of MND etc.
Today:
– Muscle twitches all over my body (magnesium helps, but doesn't take all of them away)
– Feeling weak in arms, hand, neck and breathing muscles (can't really take a deep breath), but I can still lift weights, exercise etc.
– Urinary problems (drops leaking afterwards)
– My hands' (left and right) fingers get tired easily when writing, drawing or playing guitar (E.G. can't play fast solos for a long time any more)
– My left leg feels weird when I walk (like walking on pillow + slight tingling)
– My left ear rings all the time
–The left side of my tongue feels strange and I have sometimes speech problems when I talk for a long time
– From time-to-time I feel dryness of mouth and sometimes I notice excess saliva production
I read this article about EMGs and if I understand it correctly, there have been some cases the EMG showed myopathy, but in real life the patient had ALS: Electromyogram report crucial for patients with suspected myositis
This is why I'm worried. Does anyone else share these same symptoms and does it sound like ALS to you?
I'll list here my symptoms and how my condition has progressed:
November 2020:
My left eyelid started to feel a bit 'heavy' in the morning. When I looked in the mirror, I noticed it was mildly drooping when I woke up (from time-to-time), but during the day the sensation went away.
December 2020:
I started to have problems in bathroom. Every time after peeing, there were some drops of urine in my underwear. No matter how properly I 'shook' the problem didn't go away. I saw a urologist about this and he said that my muscles down there were too tight and that was causing the problem. No infection, no prostate problems, just the muscles.
January 2021:
Feeling slight numbness on the left side of my face and headaches on the left side also.
February 2021:
Within two days: my left hand's fingers stopped working properly during typing as if the hand's muscles were cramping/moving slowly a bit (no pain). At the same time I noticed this strange feeling on the whole left side of my body (from face to shoulder, hand, ribs etc.). It felt like numbness/slight weakness but without tingling sensation. I got to ER and they did MRI on my head and neck. Everything's fine.
March 2021:
My left arm's and leg's muscles went super tight all of a sudden as if I'd done a huge workout. I tried everything to ease the tightness, but it didn't go away. I started to have muscle twitches all over my body. My left leg felt a bit strange when walking (as if I was walking on a pillow). My left arm started to feel weak from the shoulder and my hand's fingers got tired easily when I was writing or playing guitar. I went to see a neurologist and demanded an EMG/NCS. It was clean. My blood tests showed high CK and LD levels, but after 2 weeks time they were normal again.
All of a sudden I started to get weird breathing problems: I couldn't get a deep breath any more. I could still run, sing and exercise, but every time afterwards I couldn't take a deep breath. My diaphragm started to feel 'stiff' and I needed to massage it a lot. Sometimes this problem would go on for weeks, then go away and then, if I went E.G. singing, it came back the next day.
I couldn't sleep properly anymore. I would wake up gasping for air and my dreams started to feel super-vivid. My arms felt heavy every time I woke up.
April 2021:
From Feb to April I lost about 22 pounds and for some reason started to feel super hungry. I needed to eat basically every second hour large amounts of food (sometimes even during the night). Still I felt like I wasn't gaining weight (my arms and chest looked super skinny for the first time in my life). After a month or so I started to gain weight again, but the excess appetite stayed. Because of the hunger my stomach started to look like Buddha's belly.
Did a new EMG/NCS again (both legs and arms, face + repetition test (Myasthenia Gravis test)). This time they found mild myopathy in most of the muscles, but no signs of MND. In the paper it says: polyphasic, short-duration low-amplitude motor unit action potentials. The neurologist wasn't worried, she said that she's seen a lot of these and they don't necessarily mean anything.
May-August:
Breathing difficulties: couldn't get a deep breath. Acid reflux all the time and none of the medication helped. Had slight swallowing difficulties and had a gastroscopy and found out that my esophagus was some what atonic. Went onto an X-Ray test of swallowing that came back normal. Did a third EMG/NCS: slight myopathy in some muscles, but no signs of MND etc.
Today:
– Muscle twitches all over my body (magnesium helps, but doesn't take all of them away)
– Feeling weak in arms, hand, neck and breathing muscles (can't really take a deep breath), but I can still lift weights, exercise etc.
– Urinary problems (drops leaking afterwards)
– My hands' (left and right) fingers get tired easily when writing, drawing or playing guitar (E.G. can't play fast solos for a long time any more)
– My left leg feels weird when I walk (like walking on pillow + slight tingling)
– My left ear rings all the time
–The left side of my tongue feels strange and I have sometimes speech problems when I talk for a long time
– From time-to-time I feel dryness of mouth and sometimes I notice excess saliva production
I read this article about EMGs and if I understand it correctly, there have been some cases the EMG showed myopathy, but in real life the patient had ALS: Electromyogram report crucial for patients with suspected myositis
This is why I'm worried. Does anyone else share these same symptoms and does it sound like ALS to you?