Differential diagnosis towards MND

[KimT]

We have other PALS here who have PEGS and are doing well with them. Lisa still swims in her pool and I knew others who did physical activities with a PEG. It just takes a little time to heal and you have to keep the area around it clean.

Can you listen to audiobooks? That's what I do because my neck gets sore when I read. If I do read it's on my iPad and I have it at eye level.

 

[lgelb]

From what you describe and the test results, you could benefit from NIV.

No one here that has had the tube placed, that I can recall, really finds it bothersome to walk around or move. If you read threads here using the search button on top, you can find many positive experiences like not having to worry about choking or getting enough nutrition. Without enough nutrients, ALS progresses faster. And when it is hard to breathe and you do not have NIV, it progresses faster as well because you are using up energy maintaining air flow that could be used by your muscles and are not using BiPAP to rest the muscles that are weakening.

 

[lisa g]

Salomeaa,
There's no reason to fear getting a Peg placed, especially if your having trouble swallowing and losing weight. I had mine done almost a year ago and haven't regretted it. It will make it easier to gain weight and maintain it which is very important with this disease. Also, mealtimes will become less stressful, no choking and coughing.

As Kim mentioned, I swim and do light exercising everyday and have never had an issue. Feel free to ask any questions about the Peg and I or anyone else that has a Peg can answer them.

 

[Salomeaa]

Dear !!
I have visited a pulmonologist (private office) the doctor said that patients with ALS do not need a pulmonologist, only a ventilator, he sent me to the ER - yesterday I was in the ER, I spent 4 hours lying on a blanket on the stairs (my blanket from home), the pulmonologist talked to me for 2 minuty, they didn't do any tests, only gasometry from the earlobe. The pulmonologist said after my symptoms that most likely my saturation at night goes to 50 or lower. I have to go to the hospital to get NIV. The anesthesiologist also advises to do a PEG right away, because I hardly eat at all. I'm showing you my gasometry. I hope that your standards are similar to those in Poland.. I don't know what to do next..
Despite high potassium, low calcium, very thickened blood (hemoglobin, hematocrit above the norm), slight alkalosis in the blood - no one even tried to explain or help me, they did not even offer me symptomatic treatment. Nothing.

 

[Salomeaa]

Hello dears,
I have a NIV
I was in the hospital in the intensive care unit for two days, they took half of my blood, monitored all my parameters (blood pressure, ECG, saturation);
during these two days, I had gasometry tested with venous and arterial blood practically every hour, at night 5 times,
I was also physically stressed - they told me to walk up the stairs


Also to the diagnosis of ALS came the diagnosis - chronic respiratory failure. Of course, everyone reccomended PEG, the weight is still flying. Overall, I'm mentally okay. Now I have to make friends with the ventilator

 

[KimT]

I hope the NIV helps you get more energy. Surely it will help your breathing. Please consider a feeding tube. Don't let the procedure scare you. It may help you gain weight back.

You've had to deal with so much during these last few months. Some have told me doing meditation while on NIV helps them get used to it. What is the name of your NIV machine?

Keeping you in my thoughts.

 

[Salomeaa]

Thank you with all my heart for your answer, that's how I practiced yoga for 12 years, sessions with NIV are like mechanical pranayama I receive NIV very well - I treat it as a friend

 

[Salomeaa]

and my NIV is like this

prisma VENT30-C