Could this be respiratory onset ALS?

[Bestfriends14]

As Tillie said, individuals with respiratory onset ALS would not be able to lie flat on their back; their weak diaphragm would crush their lungs. So far, your issues seem to point away from ALS, and that's a great thing. Please update with your diagnosis when you get one.

Take good care.

 

[Morgannon]

Thank you so much for listening guys. If I have this disease then im happy at least that I have you guys. If I don't have this then thank you and I apologize for bothering you.

Im upset I can't handle the epap at all. Feels like an insurmountable amount of air. That's why im hoping I can get a cuirass - I feel like im pretty far along down the road towards respiratory failure, whatever this is.

Thanks guys. Seriously. Will update after Cleveland visit.

One last question before I go: is it better to exercise the muscles or conserve charge or a mix of the two?

Thanks!

 

[ShiftKicker]

I think that is better answered once the doctors figure out what is going on. It's dependent on the issue. Please let us know how things go after your clinic visit. Hopefully you will get some answers then.

Take care

 

[affected]

Ask your doctor that 'last question'. Honestly, they can answer you in light of your situation and examinations. We can't give that kind of medical advice.

Do let us know the outcome, I hope you get answers soon.

 

[Morgannon]

Hey everyone;

Cleveland Clinic is a bust. No neuro appointment before 3 months out. Turned around halfway there.

Edit: removed upsetting and insensitive things I said in panic and fear.

Update: going in to CC for EMG on 1/31.

 

[ShiftKicker]

Hello-

Whoever prescribed the BiPap is the person you should be approaching about your settings. This is something that can be addressed regardless of when you may be seeing a neuro. This forum isn't really the place to provide support for BiPap settings. I understand you are very worried about your health, however, it really is inappropriate for folks here to be dealing with complex medical issues, settings for medical equipment, etc, based on what you think you may have. That is a lot of responsibility to place on people you don't know and who don't know your full medical history. Please see your medical care provider for assistance with your BiPap for best results. It can take a while and a few adjustments before it feels comfortable.

Take care

 

[Morgannon]

Sorry - you have a very good point. Will talk to sleep doctor.

 

[Bestfriends14]

Who prescribed you the bipap? I can't believe you'd be prescribed such a device without a diagnosis.

BTW, using a bipap when not necessary, can actually cause CO2 build up.

 

[affected]

How do you know CO2 is building up?
TBH to say you are going to be a death before diagnosis is incredibly insensitive.
I think we are done.

 

[lgelb]

Though I do help PALS here and others with settings, I can't parse what your diagnoses actually are and your account is confusing.

Do discuss what is going on with your team. I can only assure you again that if you have a condition for which BiPAP/NIV is indicated, appropriate settings can be of great benefit.

All the best.

 

[Morgannon]

Guys I am so sorry I said that. I was scared and not handling things well. Please accept my apologies - I do not want to upset or offend anyone. I was just despairing that I could not get in to Cleveland Clinic.

Luckily they got me in at the Clinic next week on an emergency slot at 9 am. I will be having the conduction studies that day. I will be posting those results on that day.

Affected, I again am so very sorry. I haven't been handling this crisis very well at all. I also do not want to alienate someone who has been so kind and helpful to me in my search for answers.

Regarding my BIPAP - the sleep doctor is scrambling to figure out what's going on with my breathing. I have CSAs OSAs hypoventilation - you name it I've got it - all with normal lungs on CT scan. I am going tonight to get a sleep titration study to see if they find anything. Thank you for the warning about inappropriate BIPAP use.

There was a question about Co2 levels - I was in the hospital and they noted I had hypoxia at night but they didn't wake me up to draw a blood gas. Instead they deduced on the small amount of air I was moving in sleep that I was oxygenating sufficiently but not ventilating sufficiently.

I'm really sorry that I upset people. I was doing ok with a possible diagnosis until Cleveland couldn't get me in. Then I panicked and posted. And I hate that I did that. You folks are dealing with this terrible illness and I did not want to add to the things you all have to deal with on a daily basis.

 

[KimT]

BiPaps can be prescribed in situations other than ALS. Look how many cPaps are being used, probably at wrong settings. BiPaps are usually routinely prescribed when the PFT shows restrictive patterns as opposed to obstructive patterns. The OP states hypoventilation which might justify the use of BiPap. Nobody here has seen the PFT or sleep study.

The poster needs to go back to whomever prescribed the BiPap for clarification and adjustment issues.

 

[affected]

Thank you for explaining things.
Please don't post again now, for your own sake, until you report the results of your clinic visit next week.
All the best.

 

[Morgannon]

Hey everyone - sorry to ask this but I need some advice on a testing location. I have the option of getting tested locally in Indianapolis at a decent neuro group or getting tested at Cleveland Clinic. Both appointments are tomorrow so I have to pick one.

Is the test accuracy highly dependent on operator skill? Or is this something that anyone who is trained can do? Is it worth a five hour one way drive to Cleveland Clinic or will I be able to get accurate results locally in Indianapolis?

Thanks - any opinions are most welcome. Don't really want to drive that far because we will be away from medical aid if I need it for much of the trip. But I also need an accurate diagnosis.

Thank you all.

 

[Morgannon]

First neuro visit done. No atrophy or weakness noted in upper or lower limbs but had brisk reflexes. Memory is a little spotty. Upper arms a little uncoordinated - did the touch my nose touch her finger test at fast as possible and the right hand wasn't hitting her finger spot on so there's some sort of coordination deficit there.