john80
New member
- Joined
- Oct 12, 2023
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
I first just want to say thanks for all the support this forum has given to everyone. I've read through all the stickies and have some questions. Mostly about UMN onset and/or PLS as that's my most concerning thing at the moment.
I'll begin with a rough timeline of events and Dr's visits. I'm 43 Male. Very athletic before all this.
Symptoms first started May 2023 with left leg feeling of "numbness." Not numbness in the sense I can't feel touch to the skin, but an odd numb type sensation of the leg running down from my knee down my shin. Primary Care Dr ordered a brain MRI which came back clean. Thought it might be nerve entrapment so ordered PT. Went to PT for the month of June and that helped a bit but also started to get minor cramps at night in the back of my thighs. Maybe due from overstretching.
June 2023, Continued PT and left leg improved a bit. Right leg started to get general tightness around the right quad. Noticed it a lot when walking, tennis, biking, etc. Just didn't feel right anymore. Dr ordered panel of blood tests. All came back clean. Also ordered thoracic lumbar spine and that was normal.
July 2023. Continued tightness, muscle twitching body wide. Not constant but maybe 3-5 pulses and then stops. Continued tightness. Saw general neurologist in July and indicated my concerns for possible ALS, and he said didn't think I had anything going on but to get an EMG.
Aug 2023. EMG done and did the leg, arm and was clean. Was told no ALS. At this stage my left leg, thigh were getting tight and fatiguing easily. Walking a few city blocks would cause fatigue/soreness.
Sep 2023. Saw a neuromuscular neurologist that specializes in ALS. Said no ALS due to clean EMG but couldn't rule out upper motor neuron issues due to my brisk reflexes (bilateral 3+) but said he saw no evidence of ALS or PLS on my neuro exam. I have no pathological reflexes (hoffman, babinski, jaw jerk). No spasticity. Was told PLS would cause weakness and my strength tests have been 5/5. Was told I could push through the fatigue and try to improve my stamina, which I have been doing as of late but with lots of discomfort. And when I say "push it" walking more than a mile causing a lot of discomfort/pain.
Oct 2023. Continued muscle tightness, fatigue. I can walk totally normally for shorter distances but my stamina is low. If I walk upwards of one mile fatigue sets in the quads, soreness and achiness. I read the posts on here about feeling like an intense workout (lactic acid) and that's how it feels to me when I push it. I even have a hard time standing for more than 20-30 min now. I can fight the fatigue/soreness/pain and walk/stand but it is painful and uncomfortable, so most of my days now consist of short bursts of walking with a lot of sitting. If I really overdue it, my legs (quads) hurt the next day.
I should also say I have not been sleeping at all since these symptoms started. Very low quality of sleep even with sleep aids such as trazadone. Maybe a few hours of sleep at night for the past few months.
The Drs tell me my anxiety is high and that I should try an anti-anxiety med such as zoloft to help. I am willing to try it but I just don't think this has anything to do with anxiety. I am feeling very defeated lately and I am burning people out including my wife, family as I don't know what's going on.
I guess one of my questions is, I understand PLS/UMN can start in the legs. Is major stiffness/fatigue/soreness/achyness/pain in the legs (primary in quads) one of the presenting symptoms? I read the PLS/UMN stickies that what happens is "resistance to movement" For me, shorter bursts of walking is not a problem and my gait is totally normal and I don't have a feeling of resistance. It's more tightness/fatigue/pain. In fact, this is one of the most frustrating parts of what is happening to me as I can walk freely around the house, out at a restaurant, etc., and anyone that would observe me would say I am fine.
Another question. I was a really great sleeper before all of this started back in May/June. Does PLS/ALS cause circadian rhythm/REM changes? Not in the sense of physical symptoms such as pain, twitching keep you awake, more like your body just can't fall asleep. That's what's happened to me. Everyone tells me it's anxiety but it sure feels like something has been changed with my body to cause this abrupt change with my sleep cycle.
I have a followup with the neuromuscular Dr in a few months. In the meantime I am working with a PT that is trying to help but the PT person I met with this past week said I was a "very unique case" that he hasn't seen before. This makes me more suspicious.
Thanks for your time for anyone who reads this. John
I'll begin with a rough timeline of events and Dr's visits. I'm 43 Male. Very athletic before all this.
Symptoms first started May 2023 with left leg feeling of "numbness." Not numbness in the sense I can't feel touch to the skin, but an odd numb type sensation of the leg running down from my knee down my shin. Primary Care Dr ordered a brain MRI which came back clean. Thought it might be nerve entrapment so ordered PT. Went to PT for the month of June and that helped a bit but also started to get minor cramps at night in the back of my thighs. Maybe due from overstretching.
June 2023, Continued PT and left leg improved a bit. Right leg started to get general tightness around the right quad. Noticed it a lot when walking, tennis, biking, etc. Just didn't feel right anymore. Dr ordered panel of blood tests. All came back clean. Also ordered thoracic lumbar spine and that was normal.
July 2023. Continued tightness, muscle twitching body wide. Not constant but maybe 3-5 pulses and then stops. Continued tightness. Saw general neurologist in July and indicated my concerns for possible ALS, and he said didn't think I had anything going on but to get an EMG.
Aug 2023. EMG done and did the leg, arm and was clean. Was told no ALS. At this stage my left leg, thigh were getting tight and fatiguing easily. Walking a few city blocks would cause fatigue/soreness.
Sep 2023. Saw a neuromuscular neurologist that specializes in ALS. Said no ALS due to clean EMG but couldn't rule out upper motor neuron issues due to my brisk reflexes (bilateral 3+) but said he saw no evidence of ALS or PLS on my neuro exam. I have no pathological reflexes (hoffman, babinski, jaw jerk). No spasticity. Was told PLS would cause weakness and my strength tests have been 5/5. Was told I could push through the fatigue and try to improve my stamina, which I have been doing as of late but with lots of discomfort. And when I say "push it" walking more than a mile causing a lot of discomfort/pain.
Oct 2023. Continued muscle tightness, fatigue. I can walk totally normally for shorter distances but my stamina is low. If I walk upwards of one mile fatigue sets in the quads, soreness and achiness. I read the posts on here about feeling like an intense workout (lactic acid) and that's how it feels to me when I push it. I even have a hard time standing for more than 20-30 min now. I can fight the fatigue/soreness/pain and walk/stand but it is painful and uncomfortable, so most of my days now consist of short bursts of walking with a lot of sitting. If I really overdue it, my legs (quads) hurt the next day.
I should also say I have not been sleeping at all since these symptoms started. Very low quality of sleep even with sleep aids such as trazadone. Maybe a few hours of sleep at night for the past few months.
The Drs tell me my anxiety is high and that I should try an anti-anxiety med such as zoloft to help. I am willing to try it but I just don't think this has anything to do with anxiety. I am feeling very defeated lately and I am burning people out including my wife, family as I don't know what's going on.
I guess one of my questions is, I understand PLS/UMN can start in the legs. Is major stiffness/fatigue/soreness/achyness/pain in the legs (primary in quads) one of the presenting symptoms? I read the PLS/UMN stickies that what happens is "resistance to movement" For me, shorter bursts of walking is not a problem and my gait is totally normal and I don't have a feeling of resistance. It's more tightness/fatigue/pain. In fact, this is one of the most frustrating parts of what is happening to me as I can walk freely around the house, out at a restaurant, etc., and anyone that would observe me would say I am fine.
Another question. I was a really great sleeper before all of this started back in May/June. Does PLS/ALS cause circadian rhythm/REM changes? Not in the sense of physical symptoms such as pain, twitching keep you awake, more like your body just can't fall asleep. That's what's happened to me. Everyone tells me it's anxiety but it sure feels like something has been changed with my body to cause this abrupt change with my sleep cycle.
I have a followup with the neuromuscular Dr in a few months. In the meantime I am working with a PT that is trying to help but the PT person I met with this past week said I was a "very unique case" that he hasn't seen before. This makes me more suspicious.
Thanks for your time for anyone who reads this. John