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scaredals

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Feb 21, 2011
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Learn about ALS
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NJ
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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!
 
Just curious -- what symptoms does your husband have that lead you to believe that he might have ALS? He's been examined by a neurologist and, from what you've related here, things in the diagnostic process seem to be well in hand with no indication toward ALS. What did you find on the Internet that would possibly lead you to start worrying about ALS?

For the record, the onset of respiratory symptoms with ALS isn't anything like what you have described. What you have described sounds very much like sleep apnea. Patients with early respiratory onset don't stop breathing. They simply breathe less deeply. Additionally, if the muscles which are responsible for exhalation become weakened, the patient will begin to retain CO2 which results in daytime drowsiness, excessive yawning, and headaches.

My advice to you is to stop trying to diagnose your husband's condition from the Internet and let the doctors finish their work and tell you what is going on with him. The more you poke around in the ALS misinformation minefield that is out there on the Internet, the more confused you will become and the more fearful you'll get. Why get yourself worked up over a rare disease when so many more probable, less serious, and easily treatable alternatives are available for you to be concerned about?
 
For what it's worth I had sleep apnea tests run during the pre diagsosis phase and should none but a slight breathing abnormality at night. Trfogey is right stopping breathing is sleep apnea not ALS. My absormality was probly due to the ALS very slight muscle weakness in the diaphram. Very diffrent things. Try not to worry, breathing is usually associated with bulbar which isn't in the legs. Voice, swallowing, and breathing. My legs weren't affected untill some latter in the diagnosis. I know it's hard to do but like my doctor told me, leave the diagnosis to the ones with the medical degree.
 
Thank you guys! What led me to start worrying about ALS was the Internet. Everytime I typed in a symptom, like twitching for example, ALS came up, lost weight, etc. As for the breathing, I think he stops breathing. That doesn't mean he does, it can just be that his breathing becomes less deep as you say and I don't hear it (which is what our general practioner thinks, he doesn't think he actually stops breathing). Like I said, it's not like he wakes up gasping for air or anything. I just suddenly hear him take a louder breath. That's what I'm scared of, that he has slight weakness in the diaphram and they'll say it's the beginning of ALS...because again if it is apnea it's the central kind which everything says it's a neurological problem and again ALS shows up everywhere related to the central apnea kind. And I don't think it's true apnea because he doesn't stop breathing for as long as the seconds they say...just maybe a little less than 10 seconds. Again, I say stop breathing but it's probably just shallower breathing that I can't hear compared to the when he breathes heavier/louder. Another thing, I always feel like when he's sleeping his breathes are shorter...I try to match mine to his and I he breathes in and out more or faster than me.
He is tired during the day, but I guess he always has been, since he doesn't sleep well and sometimes has insomnia. Just today he felt again his arms pulsing while sleeping (or during one of the times he woke up). Guess we'll see.
 
Not ALS. Period.

Don't read anymore about ALS - it will cause undue anxiety on your part. That ain't his issue.

Best wishes.
 
That is simply not the story of someone with ALS (or PMA), despite what you have been led to believe via the internet.

Twitching means nothing in the absence of weakness, despite what you have been led to believe on the internet.

PMA is not typically going to present with sensory symptoms, despite what you have been led to believe on the internet. PMA is a disease of lower motor neurons and not sensory neurons.

Central sleep apnea and ALS (or PMA) have absolutely nothing to do with each other, despite what you have been led to believe via internet.

Please stop worrying about ALS (or PMA) because nothing of what you have shared would lead anyone to believe that your husband's symptoms are related to it. It sounds like you are in good hands and I believe you will have your answers soon enough with further testing.

I hope we have helped quell your ALS fears and let us know how things go.
 
Thank you so very much. I can't tell you have stressed out I've been because of all the reading I did on the internet. I had to go on Xanax, or be admitted for a nervous breakdown, because I have convinced myself that my husband has onset respiratory als. I just kept reading that the first signs of the respiratory onset would only be seen while sleeping...sleep apnea or shallow breathing. Well, he has that....and then body wide fasciculations with the respiratory and rapid weight loss.....he lost 10 pounds in a month (maybe it's stress related). I had myself so convinced! I will let everyone know what the sleep study and emg say. Again thank you for giving me some peace of mind.

I have to say that after everything I have read about this disease, my heart and prays go out to everyone that is affected by it. I didn't know anything before wonderful Mr. Google frightened me! I truly cannot express how I feel for all those going through this disease and their families!
 
Go enjoy life and don't waist another moment worrying or wondering. It is all out of your control know matter.
 
Apply the same thought processes that you are using to eliminate obstructive sleep apnea to your fear of his having ALS. You read some Internet material on obstructive sleep apnea, decided (wrongly, in my view) that your husband neither had the symptoms of OSA as described in that Internet material nor did he fit the profile of the typical sleep apnea patient. Therefore, in your opinion, your husband did not have obstructive sleep apnea and you aren't concerned about that possibility (once again, wrongly, in my opinion).

You should have a similar lack of concern about your husband having ALS. Your husband has no symptoms of ALS. Not all twitches are fasciculations and not all fasciculations are ALS. In the early stages of ALS, fasciculations are so mild that the patient isn't aware that they have them. The diminished reflex in his ankle is accounted for by the herniated disc in his back. Lost weight in ALS is usually caused by one of two things -- muscle mass lost due to the atrophy of paralyzed muscles, or inadequate calorie intake caused by the inability to eat normally by mouth due to choking and the inability to swallow (bulbar ALS symptoms). Your husband doesn't have either of those, so his weight loss is likely not caused by ALS.

Furthermore, your husband doesn't fit the profile of the typical ALS patient. He is his 30's, not his 50's or 60's. His major neurological complaint is a burning sensation, not weakness or spasticity. You're afraid that he may have respiratory onset ALS, which is the rarest form of an already incredibly rare disease -- less than 5 percent of ALS cases, or fewer than 300 cases in the entire USA in a given year -- rather than limb onset (70+ percent, or 4000+ cases per year ) or bulbar onset (20+ percent, or ~1100 cases per year).

Finally, you are the source of your own fears about ALS. When I told you in my previous post that respiratory symptoms in ALS were shallower breathing rather than stopping breathing (a sleep apnea symptom), you immediately began to doubt your own observation of your husband stopping breathing in his sleep ("I say stop breathing but it's probably just shallower breathing that I can't hear compared to the when he breathes heavier/louder"). Why did you do that? Why try to fit a square peg into a round hole? The symptom either fits the condition or it doesn't. Why is ALS a better fit than sleep apnea?

If you want to stop worrying about ALS, do one simple thing -- stop worrying about ALS. You read a bunch of confusing stuff on the Internet and you misunderstood it. That's all, and there's no shame in that.
 
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Snoring goes with a person with obstructive sleep apnea. There are other kinds......like ALS.(from deterioration of the diaphragm.) It doesn't have to go with snoring. My husband has ALS and is on a Bipap because he stops breathing over 500 times per night... and he has never snored. It wouldn't hurt for your husband to have a sleep test. If his body jumps in his sleep, it could
be a reflex to make him breathe. It's a safety device. If my husband didn't have his machine on, and fell asleep in a chair, for instance, his
leg would jump periodically and then he might breathe.
And don't worry, your husband could have a mild form of sleep apnea and be cured with a simple Cpap machine when he sleeps. If you don't get recuperative sleep, it can cause all kinds of problems in your day.
Good luck!
 
Hi Marjorie,

That's what I'm terrified of. That they will find out that he has central sleep apnea and it's ALS. I guess from what everyone else says, he doesn't show any other signs...no weakness, no atrophy in limbs....just some twitches that come and go and weight loss that has now been maintained (and could've been from stress). I know he's young (34) and that's rare, and I know respiratory onset is rare, but there are people this young that have it. I'm scared to death that he's presenting this way, they'll find central sleep apnea or a mild form of it and then say ALS and then he'll start with other symptoms too.
 
Well, that took you less than 24 hours to start worrying about ALS again, didn't it. We have said what we have to say. You can take it or leave it (you should take it, in my opinion) or you can continue your internet searching, ALS non-sense and worry yourself for no good reason. Good luck with your decision.
 
Actually I was feeling better about it all and was starting to think I was crazy to think it was ALS until Marjorie's post where she talked about the central apnea and ALS and how her husband jerks awake to breathe and made me feel like she agreed with me and this sounded like the onset of the ALS with sleep apnea.
 
I'm sure Marjorie will respond to let you know that you completely misinterpreted what she said. Please relax.
 
Actually I was feeling better about it all and was starting to think I was crazy to think it was ALS until Marjorie's post where she talked about the central apnea and ALS and how her husband jerks awake to breathe and made me feel like she agreed with me and this sounded like the onset of the ALS with sleep apnea.

Actually, you did the same thing to Marjorie's post that you did with my first post. You took the information that she gave you and twisted it to support your fears.

Marjorie said that her husband has sleep apnea, that he has ALS, and that he has never snored. Where did she say that he has central sleep apnea caused by ALS? She didn't say it (although it may be true) -- you put the pieces of what she said together that way to come to a conclusion that I'm sure that she didn't intend to convey.

Once again, I ask you -- why did you do that? If your fear is so distressing to you, why do you cling to it so tightly? You've been given adequate reason to put ALS completely out of your mind, yet you won't let it go. Why is that? What more do you need to break free?
 
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