Could this be respiratory onset ALS?

[Nikki J]

Kindly stay on this thread in this subforum unless you are diagnosed with ALS ( I moved it for you)

a competent board certified neurophysiologist is certainly more than capable of doing your emg. I don’t know the credentials of the person locally. However if you believe you might be diagnosed I would go to Cleveland as it is not unusual for ALS specialists to want their own emgs if they don’t know the examiner

 

[Morgannon]

Thank you - I really don't want to chance the five hour drive because I'm having such breathing difficulties and have a BIPAP that I cannot tolerate as my only "protection" during the drive. I'm thinking of telling Cleveland I got in locally and am worried about my safety during the drive. Plus we are having extreme winter weather here so there's the very real chance of a crash.

 

[Bestfriends14]

So, if you cannot tolerate a bipap as your "only protection" during a 5 hour drive, what do you do to protect yourself for the other 19 hours a day? Every PALS I know (who is bipap dependent) relies on their bipap 24/7, so I am not sure why you're hesitant to use it, unless yours does not have a battery.

If I can be honest, your posts are laden with anxiety, yet I really do not see anything pointing to ALS. In any case, please post the EMG summary results with your ID removed, after your appointment tomorrow. I can say with confidence, it will not be ALS, however, only a doc can tell you this. If you are told no ALS, will you even believe them? You seem to have convinced yourself that you have this insidious disease without having the typical symptoms.

 

[Nikki J]

Then your question should have been is the local neurologist competent to do an emg I can’t get to Cleveland. The answer is assuming they have reasonable credentials yes. Where was today’s appointment?

 

[lgelb]

Clinical "coordination deficit?" Or shakiness/anxiety/your own evaluation?

I could make the same comment for memory, which fragmented sleep degrades, reliably.

If she felt the reflexes or anything else to be pathological, I would expect followup to that effect. What is the plan?

 

[Morgannon]

Best;

I can't tolerate the BIPAP. The mask hurts like hell, I feel like I'm suffocating, and when the pressure is turned up to where my doc wants it to be everything in my throat starts spasming/flapping. I swallow convulsively over and over. If I turn down the pressure then things calm down but I feel like I'm not getting enough air. When I was in the hospital I did much better with the AutoServ but I hear that is not good for hypoventilators like me. I'm pursuing an alternative breathing aid currently to replace my BIPAP - maybe a sip and puff for the day and BIPAP for the night. I'm getting the tests done here in Indy. I hope it shows negative. If it does I'm going back to Cleveland in a week for further follow up.

Todays appointment was with JWM Neurology on Indianapolis. Huge group, decent people. Crappy reputation because their support staff apparently sucks. But the neuro I saw seems to want to get me tested asap.

Clinical coordination deficit. Not my assessment. Reflexes were brisk but not pathological. Her clinical assessment. Same thing with memory - she wanted me to remember "banana, love, Bobby Knight", and I was a little slow on "love" after a few minutes but I've always had a bad memory.

Follow up is EMG, nerve conduction study tomorrow. EEG st 10am Thursday. Will be posting after noon tomorrow with results. She plans to poke me everywhere.

I'm anxious, who wouldn't be? I'm trying not to think about all the stuff I stupidly read on the Internet about RespnOnset and how dismal the prognosis is. I'm trying not to think about the fact that i seem to be progressing really rapidly. I'm trying to take heart in the fact that my symptoms at first didnt resemble ALS but were closer to PPMS. We will know tomorrow.

I will either be gone for good tomorrow from this forum or I will be posting in newly diagnosed. I know you guys deal with a lot of anxiety cases.
And I hope I'm one. I'm just ready for the waiting to be over one way or another.

Thanks for the advice guys.

 

[Morgannon]

On a happy note, my 10 year old son and I are watching Boss Baby while snuggling on the couch. I highly recommend this movie it is ridiculous

 

[Morgannon]

Laurie really quick - I was going over some old posts I made and I noticed you said PALS dont often use breathing cuirasses...any idea for the reason? I'm trying to find a maskless option for my sleep apnea and this is the closet I've been able to come.

 

[affected]

I'm sorry, but I am honestly rolling with laughter with what you wrote:
"she wanted me to remember "banana, love, Bobby Knight", and I was a little slow on "love" after a few minutes but I've always had a bad memory."
How the hell did you remember this hours later to type into the message if you couldn't remember it at the time. Wait, you couldn't remember well at the time, but you can even remember what one you couldn't remember well?

I think once you have a diagnosis, please come back and let us know. Until then, 15 messages and 3 pages. We just can't say anything more until you have your EMG and diagnosis discussion after that.

All the very best.

PS the sip and puff is used to use the bipap, it isn't something different to a bipap

 

[lgelb]

If you're claustrophobic about a face mask, I doubt you'd like a machine that wraps around your torso and squeezes.

I would look seriously at every mask on cpap dot com. Some are very minimalist and many have free returns if they don't work out.

There is always a middle ground between pressure that is too high and low, once the machine is synched with your own breathing. A cuirass is not designed for typical sleep apnea.

Let us know how it goes tomorrow.

 

[Morgannon]

Ok guys. Got my results. They only tested my right arm and right leg. No abnormal findings except for carpal tunnel and ulnar neuropathy I. The right arm.

I realize that I've worn out my welcome here. So im leaving for good and will not be returning unless there is some sort of profound change like a subsequent nerve test that shows definite proof of ALS.

My only question is and im sure you've heard this a lot: is it at all possible to have a negative result in part of the body not yet affected by the disease or does it not work like that? I made it very clear to my neuro that I was having trunk and respiratory symptoms and some bulbar. I even asked her to test my phrenic nerve and she firmly refused due to the chance of lung puncture. Also told her I was getting fascics in the back and abdomen and she similarly refused and said it was not needed that the disease would show up everywhere.

I'm sorry I have wasted everyone's time here. You guys have been more than patient with me. I'm going to treat my symptoms with BIPAP (if I can stand it). I'm going to follow up with Cleveland Clinic to try to figure out what this is exactly.

Im also getting an EEG from the neurologists. It's probably a good idea. Because maybe im going insane .

I'm sorry I bothered you guys . So very very sorry . Going to Cleveland asap.

 

[Nikki J]

Thank you for letting us know. Best of luck to you

 

[Bestfriends14]

Good news as suspected. Best of luck to you and take good care.

 

[lgelb]

Great news. To answer your question, ALS shows up in multiple areas of the body on EMG, including areas that you think are fine. Neuros do not order EMG testing based on trying to get in every area you are worried about. They are doing a representative sampling that will show them if there is the kind of damage to motor neurons that we see in ALS.

In your case, there is not. CTS and ulnar neuropathy are very treatable. So you are good to go, and I'm closing this thread so you can focus on addressing what's in front of you, which is not ALS or anything like it.

All the best.