Sleep Study Quesrions

[Uptown]

I got in early for my sleep study and the results were apnea and 70% o2 sat rate. The respiratory therapist asked me if I wanted to come back for titration of CPAP or positional training. I forgot to ask and am curious if these two events are going to happen over time or one cancels the other. I haven't seen the doctor or reviewed the report yet. Thanks in advance. I am at FVC 70 and O2 sat 70 and struggling with aspirating with all meals but I seem to be the only one slightly concerned. Trying to keep a step ahead as things deteriorate.

 

[Nighthawk]

"Uptown",

With the symptoms you describe (%FVC, %O2, and food aspiration) you need a BiPAP, a.s.a.p.(as soon as possible) , not tomorrow, not within two weeks but now.
Have you made an appointment with your Pulmonologist and your Respiratory Therapist at the ALS Clinic so they can look into the issue? If you haven't, try to do it quickly.

In regards to food aspiration into the lungs, have you got the PEG-tube?
I don't want to scare you but with an FVC still on the 70% you are still good for the PEG-tube procedure. If you wait longer when your FVC drops below 50%, it's going to be very unlikely for you to get the PEG-tube procedure done.
FVC doesn't hold steady on PALS during the course of the disease. It tends to drop constantly as the disease progresses. And, food aspiration into the lungs can lead to pneumonia which is very dangerous and life threatening.

So, the sooner you get all these problems sorted, the better for you.

Take care.


NH

 

[Uptown]

I sense the same urgency in your reply that I feel. They just keep scheduling things about a month out as if it is no big deal since they believe I am doing a fine job managing all this. I do cough up huge amounts of goo with lots of particulate matter for a couple hrs after eating and in the morning. My sleeping O2 sat was 70% last summer but 97-100 standing. As I can't sit long because most of my shoulder and back muscles have atrophied I just stand and walk all day. My neurological pulmonologist is the ALS specialist in the area and one of the inventors of the diaphragm pace device so I think he is on top of it.

 

[Nighthawk]

I know what you mean by the "no sense of urgency" by your Pulmonologist and Respiratory Therapist at the ALS Clinic.
Here, the waiting time is about 4-5 months between visits to be seen by the ALS Clinic team.
In the mean time, your symptoms of the ALS progression could get worse but, you have to wait 5 months! Yes, 5 months to be seen again.
I believe the problem lies in the huge amount of PALS they schedule to see on monthly basis.

But, it's better to be seen by people at the Clinic in a scheduled checkup than having to go through E.R. (Emergency Room) with a pneumonia problem.

If your O2 level is at 70% right now, that means that not enough Oxygen is being transported by the blood to your brain and that's why the headaches.
The brain is Oxygen hungry. It's the organ in the body that needs the most amount of O2 to function and, at 70% , it's not receiving enough and that would be a motive of concern.

I am at 98% O2 (per my last visit to the Clinic last Nov.) but, I can't rely that this figure is going to stay constant the next time I see them this May. It would be correct to assume it will drop slightly over time as I have Bulbar onset.


Regards,


NH

 

[Uptown]

Don't forget I fall into the "black hole". My disorder is classified as "other motor neuron disease" and although I am losing all the muscles in my body and have lower motor neuron issues, it is not ALS per se so I don't go to clinic but manage everything by separate appointments. If I hadn't stumbled on you all...I would not be alive! Since it is often misdiagnosed as ALS I just do the same symptom management. My neck and head muscles are all going rapidly now in the final stages of fibrosing and atrophy. Up to now I have found tips and tricks to keep going. Not sure about the swallowing and chewing in the future but I see an Otolaryngologist in June for a follow up. Don't know if losing my chit eating grin will be a good thing or not.

 

[Nighthawk]

Oh, I see.

But, with Lower Motor Neuron (LMN) issues your body gets affected more quickly than when it's Upper Motor Neuron (UMN) issues as with LMN issues your body atrophies at a very alarming rate. That's why people with ALS but with UMN dominant issues or PLS tend to progress at a slower rate.

Just hang in there and I do sincerely hope everything gets sorted out for you with your Doctors.


Take care and be safe.


NH

 

[lgelb]

Eddie, if you do everything w/ separate appointments, why not get an appt w/ a pulmonologist ASAP to get a BiPAP rx? The CPAP may well be doing more harm than good.

Do you have a hospital bed? That's the best "positional" thing to have.

And I don't believe Texas Neurology would refuse to see you as an MND pt just because you are not an ALS diagnosed. They have an ALS "clinic" but treat all manner of neuro pts, obviously. Technically, lots of our PALS reading this are suspects, not formally diagnosed, because of the criteria.

I have a vague memory you are VA but believe Tricare would still reimburse outside the system?

 

[Uptown]

The sleep study was done by the area neuro-pulmonologist. The tech called afterwards and asked if I wanted to come in for positional training or CPAP titration. I have been seeing this office since October. Initial diagnosis was thoracic paraplegia.

I suppose the wording of "refusing to see me" might be a bit harsh. More accurately I made an appointment there and after 2 visits the neurologist referred me to the MND specialist and he spent time asking a bunch of questions and said the things I am doing on my own are what they would suggest and I don't have ALS. He suggested PT rehab as the MND doctor that originally diagnosed me did. He said otherwise just see your ENT for the swallowing problems, pulmonologist that I am seeing for breathing problems and whoever is working with the structural issues seems to be helping. The good news is I am in excellent shape and although half the size I was, I did manage to get out of the wheelchair and somewhat trudging forward.

The oddest part of all this is all the doctors other than the neuros keep telling my I am near death with advance stage MND. The EMGs have progressed rapidly showing fasiculations first in the neck area to now head to toe with atrophy in all areas for all types of muscles. The neuros keep saying since i have no UMN signs I don't need to worry about rapid progression although muscle loss in the head has partially paralyzed my tongue and swallowing muscles. Since it was "caused" by high dose radiation it is not technically even classified as a "disease". Initial prognosis was paralysis from the neck down that has now been modified to add the neck up. Breathing impairment is caused by muscle atrophy in breathing accessory muscles including loss of intercostal muscles. I shake like a leaf on a tree from all the fasiculations but I still appear to be non-deciduous.