scaredals
Member
- Joined
- Feb 21, 2011
- Messages
- 13
- Reason
- Learn about ALS
- Country
- US
- State
- NJ
- City
- Marlton
Hi All,
I appreciate any advice you all can give. I know you can't provide a diagnosis and I'm not looking for one. I'm worried about my husband, who is 34. We are in the process of a bunch of testings by his neurologist. His brain MRI came out clean, his lumbar MRI showed one herniated disc and a few bulging discs. His EEG had a few bursts of beta on it but the neurologist didn't seem concerned. All his lab work has come back fine....except for high blood pressure and high cholestrol which runs in his family. The doc didn't put him on meds because it's not bad enough yet and he's too young. What brought him to the doctors is that he started about a year ago feeling his feet start to get hot and traveling up to right under his knees, sometimes it starts feel more than hot like burn. It comes and goes and usually only last about 30 seconds...when it lasts more he runs them under cold water. I know this isn't typical of ALS but I know some sensory problems can occur with PMA. He also twitches/shakes/jerks at night...over the last few years it's really only been his hands and toes/feet, which I know is normal during some stages of sleep. Lately, it's been more like his feet actually move, his body jerks sometimes and he shakes while sleeping....sometimes the shaking is just in an arm or hand, other times I feel like it's the whole upper body. He used to in the past make funny sounds breathing while sleeping (sometimes like gasping for air, other times mild snoring, other times like a little "pop" sound after exhaling). Recently, I haven't heard these sounds but I also put a humidifier in our room in hopes of helping to stop them. However, I am monitoring him now because I'm so on edge and I notice that he stops breathing (or seems like he is maybe I'm wrong). Almost like he just forgets to breathe for a few seconds and then starts up again...no gasping for air anymore, just starts breathing. He'll shake or jerk or something during this time too...he doesn't know he's doing this. He knows that sometimes he wakes up for a second and goes right back to sleep but he said he doesn't realize that he's not breathing. They are now sending him for a sleep study to see if it's sleep apnea but since he doesn't snore (no sounds anymore), doesn't smoke, is thin (he's lost 10 pounds in the last month but no apparent disproportionate loss in an area or weakness and is probably from anxiety about what's going on and me worrying him...I've lost weight too during this time) I'm thinking it's central sleep apnea, which is neurological, which brings me here because all the stuff on the internet says ALS. He doesn't seem to have any problems breathing yet during the day. I swear sometimes he sounds breathless but he tells me he's not (could just be lying) and he said he can breathe while lying flat on his back while awake. I'm scared to death. They put him on Lyrica which seems to be helping for his neuropathy like symptoms but is giving him bad nightmares that make the sleeping problem worse I guess.
More info....He doesn't have the babinski reflex or have brisk reflexes but does have one achilles tendon diminished which is not symmetrical to the other one, but the dr said this could be explained by his herniated disc on his left side. He is going for an EMG in 2 weeks. His arches and calves sometimes get tight and his calves have on occasion been a little sensitive to touch when they are tight. He doesn't get cramps per se, but has had a feeling of like needles in his calves. Granted he does stand a lot at work and has just been told he has high arches. He has not lost any feeling and when the neuro did the vibration test he was fine so it's not damage to a sensory nerve, I think. He's had some twitching on his left side but nothing major...comes and goes...under his eye, his left thigh and once in his upper tricep (I'm always on his left side so not sure about twitches on his right).
Please have any of you presented with sleep apnea type symptoms only (the central kind)?
Thanks for any insight you can give!
I appreciate any advice you all can give. I know you can't provide a diagnosis and I'm not looking for one. I'm worried about my husband, who is 34. We are in the process of a bunch of testings by his neurologist. His brain MRI came out clean, his lumbar MRI showed one herniated disc and a few bulging discs. His EEG had a few bursts of beta on it but the neurologist didn't seem concerned. All his lab work has come back fine....except for high blood pressure and high cholestrol which runs in his family. The doc didn't put him on meds because it's not bad enough yet and he's too young. What brought him to the doctors is that he started about a year ago feeling his feet start to get hot and traveling up to right under his knees, sometimes it starts feel more than hot like burn. It comes and goes and usually only last about 30 seconds...when it lasts more he runs them under cold water. I know this isn't typical of ALS but I know some sensory problems can occur with PMA. He also twitches/shakes/jerks at night...over the last few years it's really only been his hands and toes/feet, which I know is normal during some stages of sleep. Lately, it's been more like his feet actually move, his body jerks sometimes and he shakes while sleeping....sometimes the shaking is just in an arm or hand, other times I feel like it's the whole upper body. He used to in the past make funny sounds breathing while sleeping (sometimes like gasping for air, other times mild snoring, other times like a little "pop" sound after exhaling). Recently, I haven't heard these sounds but I also put a humidifier in our room in hopes of helping to stop them. However, I am monitoring him now because I'm so on edge and I notice that he stops breathing (or seems like he is maybe I'm wrong). Almost like he just forgets to breathe for a few seconds and then starts up again...no gasping for air anymore, just starts breathing. He'll shake or jerk or something during this time too...he doesn't know he's doing this. He knows that sometimes he wakes up for a second and goes right back to sleep but he said he doesn't realize that he's not breathing. They are now sending him for a sleep study to see if it's sleep apnea but since he doesn't snore (no sounds anymore), doesn't smoke, is thin (he's lost 10 pounds in the last month but no apparent disproportionate loss in an area or weakness and is probably from anxiety about what's going on and me worrying him...I've lost weight too during this time) I'm thinking it's central sleep apnea, which is neurological, which brings me here because all the stuff on the internet says ALS. He doesn't seem to have any problems breathing yet during the day. I swear sometimes he sounds breathless but he tells me he's not (could just be lying) and he said he can breathe while lying flat on his back while awake. I'm scared to death. They put him on Lyrica which seems to be helping for his neuropathy like symptoms but is giving him bad nightmares that make the sleeping problem worse I guess.
More info....He doesn't have the babinski reflex or have brisk reflexes but does have one achilles tendon diminished which is not symmetrical to the other one, but the dr said this could be explained by his herniated disc on his left side. He is going for an EMG in 2 weeks. His arches and calves sometimes get tight and his calves have on occasion been a little sensitive to touch when they are tight. He doesn't get cramps per se, but has had a feeling of like needles in his calves. Granted he does stand a lot at work and has just been told he has high arches. He has not lost any feeling and when the neuro did the vibration test he was fine so it's not damage to a sensory nerve, I think. He's had some twitching on his left side but nothing major...comes and goes...under his eye, his left thigh and once in his upper tricep (I'm always on his left side so not sure about twitches on his right).
Please have any of you presented with sleep apnea type symptoms only (the central kind)?
Thanks for any insight you can give!