Originally Posted by AnnieB3
I´m at work and just saw this and almost fell off my chair!
Can answer some right away.
No Mestinon. Metacholine was the last test. The muscles started trembling almost immediately after the first inhalation. The assistant kept touching my forehead (checking temperature) Gradually with more inhalations the muscles were shaking. She kept asking me if I wanted my coat and I kept saying no. After a while it got worse and she kept looking out the door to see if the doctor was done! I felt bad for her! She then tried to ask me lots of questions about my family and keep me talking. After a while I was asked to sit outside the room by myself. I did not panic. The doctor was ages before he came, and in that time the muscles started shaking more and more violently until my head started nodding. It´s as though all the muscles were dancing uncontrollably and the bones just had to go along with them.
Once I got into the doctors I was just shivering and mentioned this. As he said nothing about it I assumed it was what happened to everyone after taking Metacholine and just a normal occurrence.
Then Ventolin which is the albuterol equivalent?? came before I went out into the corridor but did nothing to stop the shaking.
An hour later in the car my breathing was noticeably easier than ever but that is most likely from my elation to be back on that lovely´happy road´ again
The tests are in another language which you would understand! (Is there anything you can´t do???
About Mestinon, like with any drug (sedative, antibiotic) I only needed a small amount to notice an improvement/worsening of symptoms. So my max Mestinon was 30 mg but I noticed improvements even at 5mg. To see a worsening of symptoms with sedatives only 1.25 mg is needed - any smaller and that quarter pill becomes dust.
So that makes a contradiction then......worse with Metacholine but better with Mestinon.....
I will read the rest of your notes later on - thank you for your attention, Annie.
you are right about this then I can truly understand why it is important to see neuromuscular specialists since an asthma/COPD pulmonologist might miss important clues.
We don´t have any private ones here and I do like the way this pulmonologist has not yet made up his mind about things whereas the neuro had already decided even before I walked in the door