Selesnya
New member
- Joined
- Feb 1, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FI
Hello to everyone, and thanks beforehand. This is something I just finally have to ask. I'm a 33-year-old male, 67kg, 179cm. I know you are all busy and it takes strength to answer these questions, I can't even imagine, but I really hope you find time to help me with this. Sorry for my mistakes as English is not my primary language.
Somewhere around the new year, I've had these symptoms which are that my left leg feels weak and now I think my left arm is going the same way as well. I have no clinical weakness/failure, but I'm sure I have to use much more power on my left side leg when moving it than my right side. I have fasciculations all over my body, but mostly on my left leg primary muscles, and around my knee. I think these fasciculations are mostly happening on my left side of the body. I have had these fasciculations even on my left eye. Sometimes they are just 1 quick twitch and sometimes they are many twitches on the same spot before they disappear.
I've had 2 EMG's, the first 2.2.2021 and the second 19.3.2021 both mostly clear, but my last one had peroneus profundus F-wave latency relatively longer than on my left side but within reference value. Right lower limb had L5-S1 slight polyfacy mostly on myotomes on single potencies. No fibrillations or spontaneous actions on muscles were examined. Single potencies and activation were normal. No signs of polyneuropathy nor MND. No signs of myopathy as well. Slight features of old L5 radiculopathy on the right side, no signs of active or new radiculopathy.
The first one had all values within reference values and no signs of any MND or anything. All were normal.
I've seen 3 neurologists and one was a leading ALS specialist in here where I live. He checked me 18.2.2021 He made tests and statement were this:
Speaking is normal, no dysarthria no dysphasia. The tongue is clean, with no middle line no fasciculations, or atrophy. All ORL-motor functions are normal as well. H2O test was fine, no problems. Chvostek -, palmomental reflex -/-, limb reflexes are middle active, symmetrical. Hoffman -/-, Babinski -/-. No atrophy, strength is normal. Fine motor functions normal right sensory-motor are ok and normal. No fasciculations even when provoked. Coordination skills normal, no SNK or KPK. No ataxia. Checked extarpyramidalsystem: Glabella is suppressing, muscle tone normal, doesn't highlight on contralateral activation, no teeth wheel symptoms.
Result: No signs of ALS. ALS and other same kinds of diseases can be excluded.
I've taken a head MRI twice last year because of pulsating tinnitus on my ears. Everything was normal. I also took my lower spine MRI a month ago and there was minimal protrusion on my spinal that might be connected to S1 nerves. However, this doesn't fully explain my symptoms as my orthopedic said. My orthopedic didnt found anything that is not normal, but my vastus medialis was a little smaller than on my left side. He said my proximal muscles on both of my legs weren't too good as well.
Now I've seen 3rd neurologist and he said that my muscles on my left leg are not really normal vs. my right leg. My left leg muscle circumferences are 1-2cm smaller all around my leg. They took a sample of my spinal fluid and it takes 1,5 weeks to get answers if anything is wrong with it, she pointed me to a head MRI as well that is happening somewhere within 2 months. Then she said if these symptoms are still on and don't get any better or they can't find anything wrong with MRI or spinal fluid, they are gonna take a new EMG after 6 months.
My symptoms are still on and been around 3 months now and getting worse. I can still move normally, I can walk on my heels and toes, and I have this vibration feeling inside my legs but it cannot be felt with hands nor seen outside my leg. I have these fasciculations many times a day, but they are not present all the time, and provoking my muscles doesn't seem to affect it anyhow. I have pains now and then on my left leg, and it's like burning or muscle pain, but it's not extremely painful. As I wrote earlier I have these symptoms mostly on my left leg.
I've read pinned posts, but after my last neuro said my muscles are not normal I've been terrified more and more because that's something that tells me I'm not the only one seeing or feeling this. Something is wrong. And I'm not sure if my left leg has always been smaller, but the last neuro said this is not quite normal, and actually my physiotherapist said that a little odd as well.
I also hope someone with leg onset can say something.
If you have any questions, I will answer them ASAP.
I've attached my ENMG reports to this post, so you can take a look at them. I've attached picture of my legs as well, but I know photos are not the best way to say anything.
Thanks beforehand and as you know, this is VERY important for me, so I beg you please say something.
Ps. On my first EMG, places examined in the attached photos are mentioned in Finnish,but "vasen" is left and "oikea" is right.
Somewhere around the new year, I've had these symptoms which are that my left leg feels weak and now I think my left arm is going the same way as well. I have no clinical weakness/failure, but I'm sure I have to use much more power on my left side leg when moving it than my right side. I have fasciculations all over my body, but mostly on my left leg primary muscles, and around my knee. I think these fasciculations are mostly happening on my left side of the body. I have had these fasciculations even on my left eye. Sometimes they are just 1 quick twitch and sometimes they are many twitches on the same spot before they disappear.
I've had 2 EMG's, the first 2.2.2021 and the second 19.3.2021 both mostly clear, but my last one had peroneus profundus F-wave latency relatively longer than on my left side but within reference value. Right lower limb had L5-S1 slight polyfacy mostly on myotomes on single potencies. No fibrillations or spontaneous actions on muscles were examined. Single potencies and activation were normal. No signs of polyneuropathy nor MND. No signs of myopathy as well. Slight features of old L5 radiculopathy on the right side, no signs of active or new radiculopathy.
The first one had all values within reference values and no signs of any MND or anything. All were normal.
I've seen 3 neurologists and one was a leading ALS specialist in here where I live. He checked me 18.2.2021 He made tests and statement were this:
Speaking is normal, no dysarthria no dysphasia. The tongue is clean, with no middle line no fasciculations, or atrophy. All ORL-motor functions are normal as well. H2O test was fine, no problems. Chvostek -, palmomental reflex -/-, limb reflexes are middle active, symmetrical. Hoffman -/-, Babinski -/-. No atrophy, strength is normal. Fine motor functions normal right sensory-motor are ok and normal. No fasciculations even when provoked. Coordination skills normal, no SNK or KPK. No ataxia. Checked extarpyramidalsystem: Glabella is suppressing, muscle tone normal, doesn't highlight on contralateral activation, no teeth wheel symptoms.
Result: No signs of ALS. ALS and other same kinds of diseases can be excluded.
I've taken a head MRI twice last year because of pulsating tinnitus on my ears. Everything was normal. I also took my lower spine MRI a month ago and there was minimal protrusion on my spinal that might be connected to S1 nerves. However, this doesn't fully explain my symptoms as my orthopedic said. My orthopedic didnt found anything that is not normal, but my vastus medialis was a little smaller than on my left side. He said my proximal muscles on both of my legs weren't too good as well.
Now I've seen 3rd neurologist and he said that my muscles on my left leg are not really normal vs. my right leg. My left leg muscle circumferences are 1-2cm smaller all around my leg. They took a sample of my spinal fluid and it takes 1,5 weeks to get answers if anything is wrong with it, she pointed me to a head MRI as well that is happening somewhere within 2 months. Then she said if these symptoms are still on and don't get any better or they can't find anything wrong with MRI or spinal fluid, they are gonna take a new EMG after 6 months.
My symptoms are still on and been around 3 months now and getting worse. I can still move normally, I can walk on my heels and toes, and I have this vibration feeling inside my legs but it cannot be felt with hands nor seen outside my leg. I have these fasciculations many times a day, but they are not present all the time, and provoking my muscles doesn't seem to affect it anyhow. I have pains now and then on my left leg, and it's like burning or muscle pain, but it's not extremely painful. As I wrote earlier I have these symptoms mostly on my left leg.
I've read pinned posts, but after my last neuro said my muscles are not normal I've been terrified more and more because that's something that tells me I'm not the only one seeing or feeling this. Something is wrong. And I'm not sure if my left leg has always been smaller, but the last neuro said this is not quite normal, and actually my physiotherapist said that a little odd as well.
I also hope someone with leg onset can say something.
If you have any questions, I will answer them ASAP.
I've attached my ENMG reports to this post, so you can take a look at them. I've attached picture of my legs as well, but I know photos are not the best way to say anything.
Thanks beforehand and as you know, this is VERY important for me, so I beg you please say something.
Ps. On my first EMG, places examined in the attached photos are mentioned in Finnish,but "vasen" is left and "oikea" is right.
