CJay
New member
- Joined
- Jul 19, 2017
- Messages
- 5
- Reason
- Learn about ALS
- Country
- UK
- State
- London
- City
- London
Hi I am a 41 yr old male. I would like your advise on a set of symptoms that seem to at least put ALS as a possible diagnosis.
I was diagnosed with ME./C.F.S in 1999 typical symptoms , at this time I did have muscle twitches for a few months shortly after onset, thought nothing of it.
Late 2008 I seemed to relapse with more M.S. like symptoms. My arms started to shake when I lent back on them, my left hand became weak and it became difficult to do buttons. Although this fixed to about 70% of its normal function over two years. At this time I also experienced a tickling feeling in the backs of my legs between my butt and my knee joint, like the nerves where letting go, loss of balance and needed a walking stick for about three months.
I was referred to neurology and given an MRI of my spine and Lumbar puncher. Both came back ok, was told M.S was possible but no evidence.
Since then I have always suffered with balance problem, the left hand issue and cognitive problems, remembering which word, more recently forgetting how to spell words I've known my whole life. I began to complain I felt old for my age and had pain in between my ribs, which hurt when I pressed on them. Also find it harder to breath during the night, like my body wasn't supporting itself when I slept on my side, sinking into the bed and my ribs closing round my lungs. The breathing issues feel muscular and not from the diaphragm, more the upper ribs.
Forward to July 6th 2017.
I start noticing unscrewing bottles is harder, like I've sprained my index finger, but I hadn't. This lasts a week and begins to repair itself until I go to open the fridge and my finger tips fail a bit, like somebody was holding the fridge door closed, it jerks my hand. Same happens with the dishwasher, feels like it needs twice the amount of strength to open it.
I put this down to an M.E/CFS relapse, but a few hours later middle to little finger on both hands become harder to control.
The episode in 2008 had left the ring finger on my left hand weak and it would sometimes move about by itself, which was spooky as I could not feel it moving, but could see it. Also when ever I raised my arms for more than a few minutes, e.g holding an iPad , middle to little would go cold and numb on both hands very quickly.
These same fingers are effected, it made it hard to hold scissors or hold a teaspoon, buttons etc. The middle on each hand seemed to want to steal away from my index, I had crushing feeling in the finger tips and numbness down the outer side of each ring finger.
Over the next three days they begin to heal , I am left with finger pain in both pinkies when I make a claw. Sometimes the right hand feels tight and springy when I flex it, making a fist and opening.
About 3 days into repair my balance is effected and my right knee becomes weak instantly, I find it hard to stand on my right leg and it slips to lock at the knee in a backwards position , I start using a stick.
The same evening my mouth feels funny and my bite is out of position , banging my front teeth against the bottom, my jaw has clearly shifted slightly, makes chewing soft foods harder like noodles. At this time I kept gurning, pushing my bottom teeth out as if the bottom jaw wants to go forward. I thought it might be stress, but now I don't think so.
At the same time I feel intense fatigue different to M.E/CFS, that is like a flu fatigue , you feel more fever than tired and shakey. This was more a 'I've just been down the pool I need my bed' tiredness. Uncommon for me.
At this point at rest I feel like my neck is stiff, like I have a metal plate in my upper back pulling my neck backward. Then I get intense burning sensation, like sunburn running down my back, also in lumber region like vibrating going in waves from lumbar to tail. Moving about reduces this.
I go to sleep that evening and I am woken up short of breath and feel paralysed unable to move with an electric shock running down the whole of my spine, vibrating like somebody is rattling a metal rod inside it. Burning again in my back , back of hands and legs, intense pins and needles in the soles of my feet.
This happens about three more nights and settles to just burning in my calfs with constant muscle twitching in them on and off for about four more days. Some twitching in backs of hand and below the thumb, but mainly after holding stuff.
I notice my finger tips have regained strength, but my wrists are weak when holding things, also when putting my iPad down , instead of placing it, it snags my wrist, like the last bit of support is gone.
I now at this point remember other stuff, my cat feeling heavier when I pick it up, he has not put on weight. Plates seem heavy, stuff that needs wrist strength more than arms.
A couple of times I've yawned and it's turned into a grunt. Only once have I had vocal modulation when talking, like I'm crocking from the back of the throat. I can't even be sure of that, it happened too fast before it fixed.
My hands seem fixed, my arms, apart from wrist seem ok, right leading side seems slightly weaker. Still using walking stick but legs are better, although longer distance they seem to give up a bit, especially pushing off from the toe, like my toes get too tired so I'm just walking on the other parts of my foot.
Small amounts of exercise , as in walking, using hands seem to improve function until rest though, then then become weak again.
Still having twitches, increase while anxious, writing this under my nose has started twitching.
I'm confused about the intense sensory stuff though, I wonder if stress has made that worse, or whether it is a stress response on its own ?
At the moment I fear the worst as the more accounts/case studies I read, the more it seems like ALS not M.S and certainly isn't M.E relapse.
I'm not slurring words at this point. Mainly balance , weak legs, slightly weaker arms, some nasal backflow, new clicking joints, not very clicky normally. Tiredness , having mini naps, this is when sensory problems happen, stress ?
Anxiety subsided , did have a swallon , fuzzy tongue, slightly stiff at back, but this has gone somewhat, I put this down to stress as well, or maybe the nasal backflow ?
Mainly confused that some parts seem to have repaired themselves to a degree ? A lot of posts say once something fails it gets worse ? But from some of the case studies I've read this isn't true always? and some people have even repaired to go down with ALS a few years later ?
Sorry for such a long detailed post, at this point I'm waiting on blood tests for vitb12 etc. Then I will seek a Neuros advice I guess.
Any of this chime with anybody ?
Best regards
Chris
I was diagnosed with ME./C.F.S in 1999 typical symptoms , at this time I did have muscle twitches for a few months shortly after onset, thought nothing of it.
Late 2008 I seemed to relapse with more M.S. like symptoms. My arms started to shake when I lent back on them, my left hand became weak and it became difficult to do buttons. Although this fixed to about 70% of its normal function over two years. At this time I also experienced a tickling feeling in the backs of my legs between my butt and my knee joint, like the nerves where letting go, loss of balance and needed a walking stick for about three months.
I was referred to neurology and given an MRI of my spine and Lumbar puncher. Both came back ok, was told M.S was possible but no evidence.
Since then I have always suffered with balance problem, the left hand issue and cognitive problems, remembering which word, more recently forgetting how to spell words I've known my whole life. I began to complain I felt old for my age and had pain in between my ribs, which hurt when I pressed on them. Also find it harder to breath during the night, like my body wasn't supporting itself when I slept on my side, sinking into the bed and my ribs closing round my lungs. The breathing issues feel muscular and not from the diaphragm, more the upper ribs.
Forward to July 6th 2017.
I start noticing unscrewing bottles is harder, like I've sprained my index finger, but I hadn't. This lasts a week and begins to repair itself until I go to open the fridge and my finger tips fail a bit, like somebody was holding the fridge door closed, it jerks my hand. Same happens with the dishwasher, feels like it needs twice the amount of strength to open it.
I put this down to an M.E/CFS relapse, but a few hours later middle to little finger on both hands become harder to control.
The episode in 2008 had left the ring finger on my left hand weak and it would sometimes move about by itself, which was spooky as I could not feel it moving, but could see it. Also when ever I raised my arms for more than a few minutes, e.g holding an iPad , middle to little would go cold and numb on both hands very quickly.
These same fingers are effected, it made it hard to hold scissors or hold a teaspoon, buttons etc. The middle on each hand seemed to want to steal away from my index, I had crushing feeling in the finger tips and numbness down the outer side of each ring finger.
Over the next three days they begin to heal , I am left with finger pain in both pinkies when I make a claw. Sometimes the right hand feels tight and springy when I flex it, making a fist and opening.
About 3 days into repair my balance is effected and my right knee becomes weak instantly, I find it hard to stand on my right leg and it slips to lock at the knee in a backwards position , I start using a stick.
The same evening my mouth feels funny and my bite is out of position , banging my front teeth against the bottom, my jaw has clearly shifted slightly, makes chewing soft foods harder like noodles. At this time I kept gurning, pushing my bottom teeth out as if the bottom jaw wants to go forward. I thought it might be stress, but now I don't think so.
At the same time I feel intense fatigue different to M.E/CFS, that is like a flu fatigue , you feel more fever than tired and shakey. This was more a 'I've just been down the pool I need my bed' tiredness. Uncommon for me.
At this point at rest I feel like my neck is stiff, like I have a metal plate in my upper back pulling my neck backward. Then I get intense burning sensation, like sunburn running down my back, also in lumber region like vibrating going in waves from lumbar to tail. Moving about reduces this.
I go to sleep that evening and I am woken up short of breath and feel paralysed unable to move with an electric shock running down the whole of my spine, vibrating like somebody is rattling a metal rod inside it. Burning again in my back , back of hands and legs, intense pins and needles in the soles of my feet.
This happens about three more nights and settles to just burning in my calfs with constant muscle twitching in them on and off for about four more days. Some twitching in backs of hand and below the thumb, but mainly after holding stuff.
I notice my finger tips have regained strength, but my wrists are weak when holding things, also when putting my iPad down , instead of placing it, it snags my wrist, like the last bit of support is gone.
I now at this point remember other stuff, my cat feeling heavier when I pick it up, he has not put on weight. Plates seem heavy, stuff that needs wrist strength more than arms.
A couple of times I've yawned and it's turned into a grunt. Only once have I had vocal modulation when talking, like I'm crocking from the back of the throat. I can't even be sure of that, it happened too fast before it fixed.
My hands seem fixed, my arms, apart from wrist seem ok, right leading side seems slightly weaker. Still using walking stick but legs are better, although longer distance they seem to give up a bit, especially pushing off from the toe, like my toes get too tired so I'm just walking on the other parts of my foot.
Small amounts of exercise , as in walking, using hands seem to improve function until rest though, then then become weak again.
Still having twitches, increase while anxious, writing this under my nose has started twitching.
I'm confused about the intense sensory stuff though, I wonder if stress has made that worse, or whether it is a stress response on its own ?
At the moment I fear the worst as the more accounts/case studies I read, the more it seems like ALS not M.S and certainly isn't M.E relapse.
I'm not slurring words at this point. Mainly balance , weak legs, slightly weaker arms, some nasal backflow, new clicking joints, not very clicky normally. Tiredness , having mini naps, this is when sensory problems happen, stress ?
Anxiety subsided , did have a swallon , fuzzy tongue, slightly stiff at back, but this has gone somewhat, I put this down to stress as well, or maybe the nasal backflow ?
Mainly confused that some parts seem to have repaired themselves to a degree ? A lot of posts say once something fails it gets worse ? But from some of the case studies I've read this isn't true always? and some people have even repaired to go down with ALS a few years later ?
Sorry for such a long detailed post, at this point I'm waiting on blood tests for vitb12 etc. Then I will seek a Neuros advice I guess.
Any of this chime with anybody ?
Best regards
Chris