Maxime
New member
- Joined
- Sep 3, 2018
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FR
- State
- PA
- City
- paris
Hi everyone, I’m Maxime from France and I’m 39, have a past of intensive sports practice (but I smoke), tall and apparently strong – 1,93m, 110kg.
First, I wanted to congratulate you for your wonderful empathy and the time you take to support those who desperately need it. It's pleasant to see such humanity.
I read quite a lot of messages on this forum as well as the stickies of course but I’m lost and scared since 4 months now particularly for my family, although I’m experiencing health issues since early 2017.
Sorry in advance for the length of this post, I’d rather be exhaustive.
So, early 2017, I began to experiment an intense and sudden pain between scapula and spine on the left side that reduced until the pain gained shoulder territory. After MRI in June 2017, I was diagnosed a strange “out of the blue” infra spinatus tearing (muscle that’s on the scapula pulling the shoulder down). Problem with that muscle is that it can’t heal and dies (becomes fat) within a year after such a wound. No specialist could tell me if the pain near the spine could be related. I didn’t do anything that could cause this, I’ve been told that happens and mainly without cause
shock. After a couple of months, I began to have the same pain (spine / scapula, shoulder) on the right side, pain stopped in November 2017.
Had a normal life with some fatigue and regular aches in thighs until March of this year.
During this episode, I had regular neck pain with neck tingling and burning ears.
March 2018: lumbar and radicular pain + left leg aches. MRI of the Spine, 2 lumbar disks injured but not herniated, went to a therapist, lost some weight, got better. Shortly after, in April, pain between spine and scapula on the right side came again, I live with it as I tried all sorts of therapists to get some relief.
I do not know if the episodes above are related to what’s coming next and brings me today among you.
1st week of May 2018 explosion of symptoms: twitching in calves, tingling in both hands, paresthesia / numbness in both arms waking me up at night, jelly legs, tingling in legs, strong perceived weakness in left leg and left arm, general fatigue, lump in throat, short breath, stiff throat and stiff jaw muscles, all in the same week.
Though some of these symptoms subsided a bit for the last 4 months, only tingling more or less disappeared. All these symptoms were more or less present with 1 or two more prevalent at a time, but no day of peace. Difficult to work and focus in this condition.
Twitching became generalized all over the body but mostly in calves and feet and especially in the morning with some cramps at wake up (tibial anterior muscles, calves) as well as lump in throat that is the far most unpleasant thing.
Since then, I have unstoppable series of yawning, 20 to 30 in a row with throat and jaw spasms. I had two months of very painful thenars under thumbs as well as space between thumb and fingers and on top of hand.
Exercise intolerance and short breath, I yawn a lot when I make efforts or try to play tennis.
I did spine and cerebral MRI, nothing seen except the two lumbar disks mentioned before.
My GP sent me to a neuro for an EMG (quick one 20 minutes), nothing for him, has to be BFS.
One month later (early July), went to another neuro who is apparently linked to the Paris hospital specialized in neuro diseases and ALS, he wanted to reassure me but seen very low potential for the right common fibular nerve and completely atrophied right foot toes muscle. This can be explained by an old motorcycle accident that dislocated my right knee (all ligaments torn) so no panic at this stage. I can move my toes up and walk on heels without notable problem.
But the neuro found low potential on the left leg nerve also as well as mild atrophy of the left foot toe muscle. No reason for that.
But he concluded that I had several little wounds due to sports (or accident) and suspected no motoneuron disease. I tried to stick to that conclusion that becomes more and more difficult to accept.
My GP gave me anti depressor and Lyrica and I left for 1 month of vacation. He assured me it would calm my symptoms down. Medication didn’t do a lot except for the tingling and numbness perhaps, I yawn more and feel tired.
Today, back from vacation with painful ankles, I’m not sure I’ll be able to perform in my demanding job and I’m very concerned by my lump in throat and very stiff throat and jaw. Sometimes it’s difficult to swallow and talk clearly. Twitching won’t stop and my left limbs are weak, perceived it seems.
Clearly, I don’t know what to think or do and I’m scared to death for my three adorable little girls and my wife.
Thanks a lot for any advice you could offer.
Maxime
First, I wanted to congratulate you for your wonderful empathy and the time you take to support those who desperately need it. It's pleasant to see such humanity.
I read quite a lot of messages on this forum as well as the stickies of course but I’m lost and scared since 4 months now particularly for my family, although I’m experiencing health issues since early 2017.
Sorry in advance for the length of this post, I’d rather be exhaustive.
So, early 2017, I began to experiment an intense and sudden pain between scapula and spine on the left side that reduced until the pain gained shoulder territory. After MRI in June 2017, I was diagnosed a strange “out of the blue” infra spinatus tearing (muscle that’s on the scapula pulling the shoulder down). Problem with that muscle is that it can’t heal and dies (becomes fat) within a year after such a wound. No specialist could tell me if the pain near the spine could be related. I didn’t do anything that could cause this, I’ve been told that happens and mainly without cause
shock. After a couple of months, I began to have the same pain (spine / scapula, shoulder) on the right side, pain stopped in November 2017.Had a normal life with some fatigue and regular aches in thighs until March of this year.
During this episode, I had regular neck pain with neck tingling and burning ears.
March 2018: lumbar and radicular pain + left leg aches. MRI of the Spine, 2 lumbar disks injured but not herniated, went to a therapist, lost some weight, got better. Shortly after, in April, pain between spine and scapula on the right side came again, I live with it as I tried all sorts of therapists to get some relief.
I do not know if the episodes above are related to what’s coming next and brings me today among you.
1st week of May 2018 explosion of symptoms: twitching in calves, tingling in both hands, paresthesia / numbness in both arms waking me up at night, jelly legs, tingling in legs, strong perceived weakness in left leg and left arm, general fatigue, lump in throat, short breath, stiff throat and stiff jaw muscles, all in the same week.
Though some of these symptoms subsided a bit for the last 4 months, only tingling more or less disappeared. All these symptoms were more or less present with 1 or two more prevalent at a time, but no day of peace. Difficult to work and focus in this condition.
Twitching became generalized all over the body but mostly in calves and feet and especially in the morning with some cramps at wake up (tibial anterior muscles, calves) as well as lump in throat that is the far most unpleasant thing.
Since then, I have unstoppable series of yawning, 20 to 30 in a row with throat and jaw spasms. I had two months of very painful thenars under thumbs as well as space between thumb and fingers and on top of hand.
Exercise intolerance and short breath, I yawn a lot when I make efforts or try to play tennis.
I did spine and cerebral MRI, nothing seen except the two lumbar disks mentioned before.
My GP sent me to a neuro for an EMG (quick one 20 minutes), nothing for him, has to be BFS.
One month later (early July), went to another neuro who is apparently linked to the Paris hospital specialized in neuro diseases and ALS, he wanted to reassure me but seen very low potential for the right common fibular nerve and completely atrophied right foot toes muscle. This can be explained by an old motorcycle accident that dislocated my right knee (all ligaments torn) so no panic at this stage. I can move my toes up and walk on heels without notable problem.
But the neuro found low potential on the left leg nerve also as well as mild atrophy of the left foot toe muscle. No reason for that.
But he concluded that I had several little wounds due to sports (or accident) and suspected no motoneuron disease
. I tried to stick to that conclusion that becomes more and more difficult to accept.My GP gave me anti depressor and Lyrica and I left for 1 month of vacation. He assured me it would calm my symptoms down. Medication didn’t do a lot except for the tingling and numbness perhaps, I yawn more and feel tired.
Today, back from vacation with painful ankles, I’m not sure I’ll be able to perform in my demanding job and I’m very concerned by my lump in throat and very stiff throat and jaw. Sometimes it’s difficult to swallow and talk clearly. Twitching won’t stop and my left limbs are weak, perceived it seems.
Clearly, I don’t know what to think or do and I’m scared to death for my three adorable little girls and my wife.
Thanks a lot for any advice you could offer.
Maxime
