Yes! Didn´t you know?!!!!

Today I received the message from the hospital neuro …..that Mestinon helps alleviate general fatigue in lots of people so just keep taking whatever you are taking until your neuro appointment in February next year. That neuro was responding to my symptoms which at the time of referral were mostly bulbar and respiratory but I´ve never even met him.

Don´t want to mention the country I live in as it´s a fantastic healthcare system in so many areas. But the minute you present with vague, chronic myasthenic symptoms and a negative SFEMG then you clash with the core medical approach of the handful of neuros running the show in the entire country!! (an example of the choices we have: when I happened to look up pulmonologists in one town in America there were 300 yet here there were none!)

Just as well I´m feeling much better – what a stroke of luck! Luck is better than nothing. A complete remission might even help me appreciate this great ´free´ healthcare system that we have much much more than I already do,

Annie – this really does make sense and that was certainly what I was working towards.....


But now, instead of finding allegiances/making progress/working with the public health system I think I may get somewhere faster by sticking around here and working with my own favorite icons….


´Oh neuro, good neuro – wherefore art thou good neuro?´


As the only one I know is:

On the beach

Having a lie in…....

Or perhaps awake and working on his cognitive skills....

Trying to win the Grand National....

Doing a spot of fencing......

Learning how to sail......

Learning to tightrope walk.......

Maybe even learning to do the salsa.......

When he has some free time he is sitting at his desk.......

Jumping to conclusions.......


Thank you kindly for listening! I just needed to vent about the system rather than my own symptoms at this present moment.

Anacrusis

Only the last thing is a plausible activity for the people with whom you've been dealing.

Because well, if they were doing the rest of what you described, they might have been given a heavy prescription for the med and gotten a rude awakening ...

"Mestinon helps alleviate general fatigue in lots of people...."

Say WHAT???????

Has this guy even READ the drug literature?? (Sorry to be so blunt. Docs like this really get under my skin.)

Sounds to me like those folks with "general fatigue" that are helped by Mestinon are UNDIAGNOSED MGers or people with POTS (not actually sure if POTS causes fatigue, but know that Mestinon is also used for this condition).

I think I'd have to ask him to give me a copy of the literature/studies/medical texts that support his "claim".

Bless your heart, Anacrusis. JUST when I thought I'd heard it all.........................

With your wits, sense of humor and determination you will find him.

Just keep searching.

He may be just right there where you will least think you will find him.

That good neuro. doesn't have time to do any of those things.

He doesn't have time to go to conferences and tell everyone how great he is , he doesn't have time to write papers on how he treats patients , he does't have time to meet with drug reps

He is too busy taking care of his patients.

That's why it is so hard to find him.

Oh no! Just when I thought I´d heard it all!!!

A friend of mine over here has been off work for a year. She developed chronic fatigue, loss of sensation and plenty of neurological problems.
She was sent to countless group psychotherapy sessions against her will. So after one year decided to take affairs into her own hands and fly abroad to try to dig deeper into the problem....

The story roughly goes that she ate some kind of sushi with a friend at an airport over a year ago and gotten a tapeworm - She did not contact that friend at all until recently and then found out that this friend had also developed similar symptoms. She has lost most of her hair as well now after aggressive treatment and possibly vitamin depletion.

I´m sure things happen all over no matter where you go.

Thanks for your support, Jana - just when I most needed it...

Well I think I maybe at my wits end!

But wait! We found YOU here - so there is hope

There ARE pulmonologists in your country. Do a Google check and you'll find them!!! You need one.

Annie

Well I must need a course in better googling AND on being a more assertive patient. When my doc told me in all earnestness that there weren´t any private ones in the country and the ones that work in the hospital are reserved for cancer patients, I believed him. It is so hard to be assertive when your symptoms are vague AND fluctuating. Either way, if the pulmonologists have the same approach to breathing as the neuro has to myasthenic weakness then I´m in BIG trouble ......Also it is unlikely I will get a referral here without a more dramatic symptom presentation.

I will PM you about this.

I do have a recommendation for an excellent one in a neighboring country
The more I think about it the more I am convinced that at least I would have a trustworthy solid base from which to start with.
And after all these years of mediocre investigation whilst symptoms have had time to spread further, I really really do deserve at least that much.


Have a lovely day

A.