Recent content by Salomeaa

Thank you for moving the thread! I have the opportunity to get a wheelchair, even an electric one, reimbursed by the Polish State. Thank you! Yes, I'm still tired after waking up, maybe it's the malnutrition and hypoxia to blame - maybe I should use NIV more. Yes, unfortunately, it looks like...

good morning, I haven't written for a long time, I wanted to ask at the beginning if I can move my thread to the section where there are people with a diagnosis - because I already have a diagnosis of G12.2 I was recently examined by a neurologist and compared to the last very thorough...

and my NIV is like this prisma VENT30-C

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 :-)

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...

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...

I have an appointment with a pulmonologist on Wednesday and we're going to talk about NIV From the spirometric test, I only know that I have a flattened expiratory curve - there is a plateau of the expiratory curve, which indicates obstruction in the upper part of the respiratory system - which...

Hello dears, I have not been writing for a long time. Turns out I have bulbar type ALS. Neurologists convince me to PEG, I am very afraid of the procedure. As for the news - I can't wake up in the morning, I feel terribly tired, as if poisoned, despite the fact that I sleep sometimes for 10 - 12...

Yesterday I tried to make an EMG appointment, but I couldn't. I can only call on Monday. Yes, it's been known since November that I have MND - now they say it's ALS, I don't know why the neurologist doesn't give me Riluzole.. I also have a date for genetic tests at the genetic clinic on August...

as I wrote to you once, in Poland we have one diagnostic code G12.2 ALS into which everything is thrown - ALS, PLS, bulbar ALS, spinal muscular atrophy.. My neurologist is afraid to give me Riluzole because I may turn out to be PLS (primary lateral screrosis) and then in Poland Riluzole is not...

Thank you for replying. I have clinical signs of upper and lower motor neuron damage. I had an EMG done on November 28, 2022, but the doctor did only one muscle with a needle and it showed no changes - it was a muscle in the thigh. ENG both legs were examined. Now the neurologist wants an EMG of...

Guys, my battle with MND continues.. on 16.01 I visited a neurologist who specializes in MND and during the examination there were some CLINICAL damages of the upper and lower motor neurons - fasciculations on the tongue, trunk, limbs, muscle atrophy on the tongue, hands, muscles above the...