a REGULAR neurologist:
is the gatekeeper to the only two myasthenia specialists over here. I wanted a safety net in case things ever get worse again
(being out of breath before the end of a short sentence, unable to finish a round of applause due to deltoid weakness etc etc)
I´m afraid I´ll have to leave them all behind in the Emerald city where they belong and find an ordinary private neuro
since it seems like a neuro with a good attitude will get me further than one that already
, I don´t think that neuro was a whacko - just a classical
neuro fit to deal with classical
diseases with classical
But thank you for supporting me
I did actually appreciate that!!
Those are horrific situations you describe, Alice, Ravenclaw
with your daughter.
I can just see you using incredible survival instincts and imagine how others may not have been so fortunate
because of a combination of mediocre
medical intervention and simple bad luck
´Telling a patient that their breathing difficulties are the result of their understandable fear and being very supportive
about it, allows them to be both ignorant and caring physicians at the same time. It is a good solution for them,
but a very dangerous and cruel solution for the patient.´(Alice)
This is exactly
how I feel about being told that the Mestinon working is just
my imagination and to just keep taking small doses if
I really thought it was helping me. Over the years by the time anyone suspected anything, myasthenia had gradually had time to
slowly crawl into new muscle areas including trunk, neck, swallowing, breathing and finally eyes (which seems like the opposite
progression to the usual one) I can see if things were to ever get any worse I may run into big problems with my local hospital if I am unlucky.
, what do you think is the reason it took so long for you to get diagnosed?
Alice suggested it was a good idea to get my normal breathing tests during a good time then they can be used as a reference later on.
So the ones I did take were normal. (no MVV taken but a free asthma and allergy test included)
I did like the feeling of a little squirt of Ventolin making you breathe so effortlessly all the way home.
I´m coughing intermittently on my saliva and I went to the dentist and found I could no longer swallow unless I lifted my head
all the way down onto my chest, but yet I was still able to get home and eat my food without problems.
So my symptoms are very light
and my breathing feels normal at the moment.
you make up for at least a 1000 neuros and their stagnant attitudes
for that lovely note. I do appreciate my new coat of many colors! Hope to hear your story one day
It just fits to write and end on a positive note, today.....
a GREAT pulmonologist:
- I saw him on google and was able to predict from the photos and all the info and research that this would be a good pulmonologist
even though he was not a NM specialist (there are no private ones)
- He was interested in Mestinon working on parts I did not expect it to. He was not surprised it worked on my breathing
- He was not surprised that less than 2mg of sedative contraindicated for MG could in very rare cases like mine cause breathing,
swallowing and severe choking problems. He said that the fact that my 10 rechallenge doses caused consistent delayed payback
symptoms therefore it was highly unlikely to be of psychosomatic origin
- He was the first person to understand when I described a recurring pattern:
Sedative followed by restrictive breathing followed by severe general limb weakness
- This pulmonologist was the first doctor in four years to show interest in when it was that respiratory difficulties actually started
(during 9 courses of consecutive antibiotics) He was also the first person to ask why I actually needed them
- My description of breathing issues and head falling down on chest onboard an aircraft were referred to as neuromuscular
- I mentioned Alice and Annie´s info (without naming them) and he was really interested in that and also in how much I had done on my own
- He was an instigator/researcher/original thinker as opposed to an ambitious compliant academic
- He told me to get another neuro (in a way that I realized he wasn´t saying those words for the first time....)