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Double A

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Hello, I would've reffered to my last post but due to time it was closed so I'm back reporting my results from April 2018 from Houston Methodist.

The NCS/ emg were basically the same as 6 months prior, emg still showing chronic denervation with partial reeinnvation and NCS showing 40% slowing of peroneal and tibial motor nerves. Dr told me I don't have ALS and of course I'm excited but still concerned bc according to the stickies I've read it says denervation with reeinnvation happens with ALS and that's what I have.

According to another sticky I read it says that motor nerves get damaged first and then weakness and atrophy occur, my question now is why do they say NCS is usually normal in ALS but then sticky says motor nerve damage occurs first?? I'm confused.

Also, my lurking eyes see where some ppl don't actually see weakness for a couple years after a dirty emg. I'm going on 2 years of minor toe and ankle weakness of right foot and fasiculations. I can still walk and toes and heels but struggle a lil when doing single leg raises on right foot, it goes about 75% of the way and left is no problem. I'm 37 years old now. Sorry for long post just wanted to be somewhat detailed. Thanks for listening.
 
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Nikki J

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Hi please point me to the section in the sticky about nerve damage( which sticky and paragraph). It sounds like it needs editing it is the motor neuron damage that comes first that is reflected on emg not ncs. Thank you

aLS is characterized by chronic and acute denervation yes. It needs to be widespread and progressive. There are other causes though. All ALS has acute and chronic but the reverse is not true. Not all acute and chronic is ALS.

You are going to a great place. Your doctor said not ALS. What did they think and what is their plan?
 

Double A

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Hi Nikki, the Dr just said I definitely do not show acute just chronic denervation w reeinnvation but with a abnormal ncs. And to just keep checking up every 6 months or so. I was afraid of posting my results bc I didn't wanna get chewed out or anything, it's just sometimes I feel the nueros are just playing the waiting game to see if anything gets worse and mentally it is frustrating. Last thing, can acute show up at a later time with chronic denervation or is it usually they're already with chronic if it's ALS, I have many fasiculations noted on emg is that considered spontaneous activity? Thanks
 

KimT

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The spontaneous activity that occurs in ALS: 1. Positive sharp waves and 2. Fibrillations. Fasciculations are pretty much ignored for everything since they are common in normals.

They are probably having you come back so they can figure out what it is you do have. My guess is that if everything stays the same, they'll stop doing EMGs.
 

Double A

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God bless you Kim. Thank you so much for replying. And to all others suffering from this horrible disease.
 

Double A

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One last thing I forgot to mention is that a few months ago I started noticing shortness of breath while just walking and sometimes even when talking in a conversation. I thought hmm maybe im out of shape or something, so made an appt with a pulmonologist and did a PFT, it was abnormal also and showed minimal obstruction of small airways and overinflation. Is this something you would see in someone with ALS ? Thank you.
 

lgelb

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The PFT report would be helpful if you want to post it. But in any case, you have 2y of minimal progression, of something that your docs/EMGs say is not ALS.

Best,
Laurie
 

KimT

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Pulmonary function tests in people with ALS show restrictive patterns, not obstructive patterns. An obstructive pattern with overinflation makes me think of COPD. Have you ever smoked?
 

Double A

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No Kim I've never smoked a day in my life but I do work at an oil refinery and do inhale sometimes some pretty nasty toxic chemicals such as h2s, benzene, ammonia's, sulfur dioxide and coke dust. I just feel like I'm too young to have COPD and my pulmonologist Dr was so in and out that he didn't explain anything to me, just said well u have obstructive lung disease and walked out..
 

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Obstructive lung disease is not associated with ALS. It could be asthma or some other form of COPD. Mild COPD is more common than you think. My housemate has it and he was a long-distance runner who never smoked. The CPap helped him a great deal. Ask for a copy of your PFT and an explanation of any treatment necessary to help with breathing. Have you had a sleep study done? You might need a CPap machine. Yes, those chemicals can contribute to COPD. I knew a guy who had asthma and chemicals from a carpet cleaner sent him to the hospital for 8 days.
 

Double A

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Ok awesome thank u for you're time you've given to me. It's greatly appreciated, have a great day.
 

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hi again, I was happening to read some pictures here of symptoms of als from the forum. It mentioned excess saliva as one, funny I read that BC for over two plus months now thats exactly what I've been having and I'm having to constantly swallow my saliva or spit it in the trashcan or wherever I am. Only time it really scared me was at night for a couple days the saliva wld make me choke in the middle of the night, until I elevated my head with another pillow and that allievated the problem. My question is when that happens in ALS , does it describe what I'm experiencing? Is it part of bulbar? I'm not drooling or anything as of yet.. But definitely frightened now BC I saw this as a symptom.
 

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Hey buddy-

You are very concerned about ALS despite having no pattern of symptoms that indicates it. You have not listened to the people here who are very knowledgeable about ALS and who have suggested politely so far that you do not belong on an ALS forum based on your reported symptoms and the diagnosis by a doctor that you have obstructive lung disease.

You have a diagnosis (obstructive lung disease of some sort), you need to keep following up with the specialists you are seeing to get care and ask about your symptoms. You can't keep trying to wedge your symptoms into an ALS diagnosis, as decided by you- it's preventing you from seeking appropriate care and is taking the time up of people to keep answering you on this forum when there is no need for you to do so.

There really isn't anything anyone on this forum can do for you except urge you to continue seeking care with actual doctors in person. Sitting on a forum for a rare neurological disease nets you zero benefit and may actually divert you from pursuing wellness and treatment for what you DO actually have. This is unfortunate.

Please seek appropriate, in person medical care. All of your questions can be posed to your doctor. Ask what your symptoms mean and what your next steps should be- that is your right. Not saying there isn't something wrong or of concern- but you have been assured multiple times by people here and by your doctors (one of whom was an ALS specialist) that you do not show signs of ALS.
 
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Double A

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shiftkicker , totally understand. I don't wanna be one of those ppl who are 19 yrs old with a eye twitch and normal EMG and think they have als. I'm not one of them, I do very much listen to the great ppl on here and heed theyre advice. I was simply asking about the saliva issues which I've never discussed before, but I have an appt with my nuero next month and of course I will ask him ,I'm just pretty anxious as cld be expected. Appreciate the honesty though and I won't post anything until I see the nuero next month. Thanks.
 
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