A good place right here.........
 

I thought this thread would be an appropriate place to stop by and write just a few sentences…..

It was only a month or so since I posted on this site….Yet it feels like an entire year has passed since then

My biggest problem these days is finding enough time - Rather than finding enough energy ..........

This has been a long process…..and this is far from what we/any of us expected.

Although I am confident and secure about my experiences I no longer feel it appropriate to write about them on a regular basis on this forum, especially when they no longer match anyone else´s.....(although I mirror and can relate to most of the myasthenic experiences that people write about here. The slow progressive remission of my own symptoms, and my own descriptions of them may only serve to give false hope to others especially when my own tests have turned out negative for MG (except to Mestinon which worked on symptoms - but I no longer have a need for)
And anyway, going into a remission (of whichever type) brings a whole new set of questions, unfamiliar issues and dialogue to the family table.

I must be the happiest person alive :)

Even all my bad posture habits are returning - and I am so grateful I have muscle strength to even resume them all over again without medication or even the vaguest contemplation of exercise! During a 5 year period, fluctuating muscle weakness reached a peak and then confusingly continued to spread to other myasthenic muscle sets but with gradually lessening intensity, frequency and duration of symptoms themselves.

I was very fortunate to pass by this forum on the tail end of a remission that was by no means clear cut and was able to process most of those experiences involving the muscles over many years. I am extremely confident and secure of what I have been through now - yet at the same time I cannot believe that I am the one, for a change, looking around and observing healthy people and those younger than myself - struggling to keep up with a busy schedule while I have stamina enough to keep on going :)

I also realized this is the first time I do not even need a doctor – Forget a neurologist!

I Very humbly accept and appreciate this unusual position….


Thinking of you all......a lot.....(((((((((((:heartthrob:)))))))))))

Thanks so much for stopping by and I am soooooo glad you are doing soooooo well. It gives us all hope.
kathie

I've never seen this post before, or I would have given a reaction. Hope it's not toooooo late :)

Wow.
Well, I don't take real offence, but I really think you do not stop and think about the variation in the severity of MG. I just must admit, it does kind of does something to me when people say it's the best out of all auto immune diseases or that you would even "choose" MG.

Of course, some people with MG have good lifes, just take some pills and you're able to do a whole lot of stuff. BUT this is also the case with cancer, MS, rheumatic diseases, and so on. Some people get a mild version, need little treatment and can on with there lifes. Just because you don't see the disabled MG's (it's much rarer than MS-which in most cases doesn't even lead to wheelchair as you see it-) doesn't mean they aren't there.

I have had cancer. I still have rheumatic disease which distroys my bones and even some of my organs. I have MS. I have thyroid disease. I have diabetes.
But MG is my worst one. It disables me the most. If I could choose (?) I would have all my other diseases combined rather then only MG.

I'm sorry for my reaction, but I just don't get how people could say such things...no offence, but it doesn't help to live in a society where most people think my MG is easy peasy to live with. Please remind that even if your MG is mild, it's still yours, not MG in general.
I still get the question: eh, but that's the disease where only your eyes get a bit droopy? Of course.


Anacrusis, such good news! I hope this will just continue, and it's great to read you haven't have enough time!! I hope you're doing great :hug:

Remission
 

How time has flown just a day before I go on that journey I've become so much better stronger able to do things I only dreamt of
Anacrusis I am the happiest person well we both have to share that I was worried can anyone be so happy is that normal !! The last five years has been differcult being alive is what matters when I get back to the UK I'm having surgery parathroidecrtomy to get my calcium back to normal at last will be a new start I'm so grateful for all the advice and support that this forum gives
Shame that Drs and Neurolagolists don't!!
Alan:)

The other day the doctor asked me how I was feeling and I said I'm doing alright. I realize now that I wasn't alright, but I was alright in comparison to how I've been feeling lately. Maybe it was a mistake on my part to say that I was alright because I'm not. If I take it easy and do hardly anything during the day and take my pyridostigmine, I feel better than the days when I exert myself. I imagine the doctor now thinks that I'm in some kind of remission because he seemed pleased that I said I was doing alright.

Yesterday I pushed myself and now I'm paying the price. I haven't been able to push myself for almost a year now without negative results. Previous to this there were breaks where I didn't feel as tired and was able to climb mountains, but now it seems that those days are over. I hope for a remission, but in order to know if a remission is in the cards for myself, do I need to keep pushing to test whether I'm headed towards a remission? I'm not sure if my better days are now my normal. I can say that my better days are not anything like my better days before ten years ago.

My better days are 1. when I can breathe. 2. When I can reach out in front of me without causing a rhomboid strain. 3. When I can swallow without choking. 4. When double vision isn't too bad. When my arms don't feel like lead weights. 5. When I can hold my head up. (These are just a few of my symptoms). I can only do any of this because of Pyridostigmine.

I might appear to be alright, but I'm not alright. I'm glad when those day come but if I do anything like shopping on one of those days, some...if not all of the above, will reverse. However, it does give me hope to read that some of you are in remission.

Pingpongman, Ravenclaw, Celeste, Tracy9, Kathie, Quandry, and Jana too…Wishing u all well for the month of April….

Alan, .....SO GREAT!...:)

I do also hope that you manage/d that long journey to your daughter´s wedding.....

I am aware of one quite Exceptional exception..... :)