• Dev keshav

    September 9, 2021 at 4:46 am

    We all have fears at some or the other, even in normal life situations. But, my worst fear at the moment while writing this is that of suffering from respiratory muscle weakness, and dying because no one will realize that is what my problem is.
    I have had an allergy problem for a long time, and often had breathing difficulties.  It was most prominent in the evenings , so I would take a cetirizine tablet. I think it’s only about 4 times in the last 40 years that I needed to use an inhaler. However, the neurologist who confirmed my diagnosis said that Myasthenia’s cannot use antihistamines, and that I should manage with a mild  hay fever nasal spray.

    About 3 weeks ago, when the weather started warming up , by coincidence I began to have swallowing difficulties. I first thought that it was a cholinergic  crisis, as happened before, and stopped taking my Pyridostigmine. I soon realized that I was wrong, as I started slurring and getting worse. I immediately took a tablet and was okay then except for the excess mucous causing swallowing difficulties, coughing and breathing problem.
    My GP has put me on a nebuliser with salbutamol/ saline solution 3 times a day. Every time I use it , my pulse rate is very high over 100 upto 128, and my chest has a burning feeling like I have rum miles. My doctor says these are side effects of the treatment, but it will settle down.
    I am really afraid that if it’s my myasthenia Gravis that causing my breathing difficulty, then it won’t come right. My wife and are old and live alone and even if I have an emergency which requires a specialist,  we would need to drive 80 km to the city.
    In these covid times, we need to test for covid before even entering the hospital. All this takes time, and we know of people  who have died in the car park before being attended to. Dying because of struggling to breathe is like how fish feel out of water. It’s a nightmarish thought.

  • Charles Karcher

    September 10, 2021 at 8:51 pm

    The symptom I fear most is the inability to swallow.  Actually my first symptom was double vision.  That soon progressed to inability to swallow and slurred speech.  It took 4 hospital stays over a three month period to stabilize my condition.  Each time I was fitted with a nasal feeding tube to receive nourishment and oral medicines.  Getting those inserted was one of the worst experiences of my life.  I lost approximately 35 lbs during this period.  After I reach stability in my treatment regime I was constantly eating to reassure myself that I was able to swallow gaining back over 45 lbs.  After being stable for approximately 20 months I have been able to psychologically convince myself to not eat all the time and my neurologist has given me leave to exercise again I have managed to get back to my prediagnosis weight and a little less.

  • Amy Cessina

    September 11, 2021 at 12:08 pm

    Well Charles and Dev summed up both my fears breathing and swallowing. Can’t live without those functions. And no one knowing what’s wrong. I have recently switched most of my doctors and just go to one of the top hospitals in another state which is only about an hour away. That way they can all see my records. Im more comfortable with knowing that care is coordinated.
    I kind of decided that after being hospitalized last year and two doctors having a shouting match outside my room as to what was wrong with me. Calling each other stupid.

  • Ronald E. Clever

    September 14, 2021 at 12:53 pm

    I consider myself lucky when I read some of the responses here.  I have only been hospitalized on one occasion so far and that was for respiratory distress.  Like the person before me I am constantly nervous about breathing and swallowing to the point I bought myself a large recliner to sleep in.  In addition to MG, I am extremely overweight since all the meds that I take make me hungry.  I also have asthma and sleep apnea.  If I sleep upright it helps a lot.  I worry about going to sleep and not waking up.  Some nights even in my chair I wake up gasping for breath.  It is a constant fear.

    • Dev keshav

      September 14, 2021 at 1:05 pm

      Hi Ronald, it looked you were describing me! Hope we can carry on without more distress. Wishing you, and everyone the ability to cope.

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