Annie.....

Thank you for the concerns and ideas you presented some months ago now.

It is with the greatest relief that I can report that I actually no longer need help from anyone.

I have been re-reading a few of my own older posts thus summarizing my own experiences:

http://neurotalk.psychcentral.com/thread175640.html

http://www.mga-charity.org/forum/pre...contradictions

http://neurotalk.psychcentral.com/thread168624.html

http://neurotalk.psychcentral.com/thread184074.html

http://neurotalk.psychcentral.com/thread173582.html


I know that my fatigable myasthenic weakness progressively reached itīs highest peak after 3 years. And I remain with only my suspected sero-negative myasthenia gravis diagnosis and physiotherapist reports stating presence of fatigable weakness during worst peak.

It took 2 years to regain the use of my hands and fine motor skills, yet at the exact same time myasthenia would start up in new myasthenic muscle areas but with much less intensity than before.

I have now, over the course of the last 7 months, become 100% symptom and Mestinon free.
(And I am also very happy to report I am also doctor and neuro free since January!)


Here are just a few of the simplest things I have enjoyed appreciating – (without needing any rests whatsoever to complete any of the tasks):

• Finishing turning the pages of a newspaper

• Finishing standing in line at the supermarket

• Finishing speaking a sentence

• Finishing reading a bedtime story in the same voice that I started with

• Finishing chewing my meal

• Finishing sharpening a pencil

• Finishing a round of applause

• Finishing pouring a cup of coffee

• Finishing climbing the stairs

• Finishing writing my own signature

• Finishing brushing my teeth

• Finishing the day, with left over energy to spare….

About energy:

After years of fatigable weakness that also dragged down my overall energy level state, like a lot of people, I gave up on ever finding my way back to that original energy state again. However....last November unexpected pre-myasthenia energy level sparks began to ignite for the first time in over 5 years. Eventually these sparks became more frequent until there were so many you would think that a never-ending spectacular display of fireworks had just taken over!
In the end the old heavy mass of lava-like myasthenia which was absorbing all traces of energy was also now transformed into smaller myasthenic flashes that were becoming less frequent and shorter in duration, until they eventually disappeared completely. Triggers also backed off and lost all their power, and pay-back time is now just a bad memory.


About exercise:

I have deliberately not exercised my upper body the last few months to be able to observe any continued changes with minimal external interference. To go from the strength of a debilitated 90 year old trying to lift a cup of coffee that feels like a bucket of concrete to that resembling an energetic 20 year old jumping on a trampoline - all at the age of 50 and without a strength training program, is just going to have to be what I call the miracle of my own lifetime. I am very excited about the huge, and gradual - but also very startling improvements to muscular strength without the use of medication, exercise program or change in mental status.


About Marie Walker:

She also eventually gave up with that cheeky little phenomenon of hers: whilst using one set of muscles she would surprise you with weakness in another. And all muscles are now acting like beautifully behaved children in the classroom


About gratefulness:

I am grateful to the person who started this forum, the moderators, the person who even thought about the possibility of editing our posts once they are written, even the person who threw in so many little icons that helped keep me sane and express my self when words would fail me. I came to NT looking for a diagnosis, but instead walked away with my dignity intact precisely because of the people around here. I hope I never return, but I know that I am a better person for having been by here.


About doctors & egos:

As most people know it is hard enough to hold onto your dignity with unpredictable fatigable muscle weakness - never mind throwing a bunch of negative blood tests and a few predictably arrogant doctors into the mix - just to zap your already limited energy levels. For a while I thought I would suffer a huge blow to my psyche after going round and around in the diagnostic tumble dryer. But that did NOT happen precisely because the regained power in just one single set of fully functioning previously myasthenic muscles is way way greater than the preservation of my own ego - or anyone elseīs ego. So great in fact, that it eradicates all in that is in itīs path, silencing all opinions, and leaving you with the peace you had before it all started, and inevitably a little bit - Or perhaps, even a great deal wiser.


About the future:

If at any point an opportunity should arise - or I create one myself - to help this disease in any way, I will give back by doing whatever my cerebral powers allow me to do to change things for the better for all those still struggling with myasthenia gravis, whilst I still can.


Best Wishes


Anacrusis