Anacrusis, I didn't want to muck up Llonghair's post but I do want to discuss a few things - if you're open to doing so.

You wrote:

Anacrusis, I honestly don't think sarcasm helps you or anyone else. No one is saying that you have an imaginary illness or are not deserving of care or asking stupid questions - because no questions are. I honestly don't know if you are keeping anything from us because you haven't been talking about your situation specifically.

I am sincerely concerned about your situation, Anacrusis. As far as I know, you haven't had any positive test results for MG. You have had some weakness but now you say that you are fine. You had breathing issues on planes but, as far as I could surmise from your posts, you said it was from sedatives.

If it were me, I'd want to know exactly what is going on and have proof for it. I sure wouldn't want to be treated for something I don't have though nor would I want doctors to miss something and not be treated. It's a difficult situation you're in.

So the problem remains: What is making you sick? What disease state do you have?

If you have MG, you deserve to be treated for it. My concern is that it doesn't appear, from what you've said, that you have had any positive test results. Is that correct? Do you have a positive clinical test for MG? Do you have ptosis? Are you on Mestinon?

My reasons for asking is that I am sincerely concerned that if you don't have MG, you need someone to help you figure out what IS going on. I'm not trying to upset you, only trying to ferret out what's going on so that you can get help.

What if doctors have missed something? What if it's something else and that something else is insidious or is getting worse? Or what if you do have MG AND something else?

Many of us know how hard doctoring can be. Sometimes finding the right answer of what's going on might take time. But taking too much time can end up hurting you.

So, how can we help? I'd really like to cut through the silliness and sarcasm to see what we can honestly and sincerely do to help you out. That is, if you want help.


Annie

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 it´s 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 else´s ego. So great in fact, that it eradicates all in that is in it´s 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

Anacrusis, I see you've chosen to leave the site. I sincerely hope that this was your decision, and that you were not influenced by anyone. Change can be difficult, but change can lead to some pretty wonderful adventures.

Perhaps I'm too late, and you've left, but I'm hopeful that you will see my message. You certainly don't need to respond so I'll say that my question is rhetorical. You are very expressive, and gifted, and I wonder if you have ever given thought to being a writer.
All the best....

No - it´s not like that at all! I am still´Anacrusis´and I still have my account. I´m just no longer active as a myasthenic member...

And yes, I may one day like to have written a paper called ´The effectiveness of brain rewiring during flucutuating disease´ and perhaps write a´Disease and dignity´post. However, I think my writing has gone into good remission now!

When my weakness got worse some years ago, it was a gradual process over a 3 year period. It was such a slow process and in the beginning involving mostly only the deltoids and hands. I could not even finish waving goodbye to my little son going to school.
I call that my climbing up Mount Everest period - alone to the top and without the correct equipment. There were not many that saw me leaving. And even fewer that were able or willing to observe a fatigable weakness journey in a professional and experienced manner. And that made it easy to be left alone to one´s increasingly creative, fantastic, adaptive and sometimes ridiculous strategizing methods on how to try and get things done with minimal amount of muscle exertion!

However, it was quite another story on the way back down from that long expedition! Everyone saw me coming and suddenly wanted me to start running! Everyone sensed I was getting stronger. Everyone wanted to party - and all day long! People who had held back for so long suddenly developed semi-neurotic high maintenance behaviors! I felt like I was being dragged into others´hectic schedules before I was even back on my own, and I even had to answer one family member who expected me to make up for the 5 or so years that I was out of action, by doing double the amount of work - since I was now feeling better. I´ve been extremely busy reintegrating myself back into my old life. It has come with plenty of challenges I did not even expect. Things have calmed down now though and expectations and energy levels are all synced nicely, just as they should be....It took a long time....And a lot of energy......


All my best summer wishes 2 U Fortunatos,


Anacrusis