Out of´a´myasthenic straight jacket
 

I can now:

• Wash my hair without my arms falling down

• Hold a cup of coffee without it turning to´concrete´ in 2 seconds

• Brush my own teeth and squeeze my own toothpaste

• Type more than one sentence without fatigue!

• Grasp an object with very firm grip

• Open jars, packets and envelopes

• Hold the weight of my own upper body and arms up

• Climb stairs without getting breathless & with thighs like rubber bands

• Kneel and do tasks on floor which involve prolonged use of neck muscles

• Speak later in the day without sounding like a drunk

• Speak without loosing my breath

• Chew without tongue fatigue

• Eat safely and manage secretions effortlessly!

• Drink and eat combined consistencies with normal speed and muscle coordination

• Go weeks without choking on my own spit

• Sit, speak, eat during meal times without one muscle set giving out

• Breath freely and without thinking about it

• See the horizon clearly on a daily basis

• Accomplish a 10 second task without taking rests in between to finish it

• Get through the day without diurnal fluctuations of energy/muscle weakness

• Manage heat without illness or exacerbation

• Engage in light exercise without it being harmful

• Feel appropriate strength in previously affected muscles (except deltoids)

• Predict how I will feel 2 days in advance

• Observe someone 50 years my senior and no longer feel that age

• Have a neuro appointment without detrimental effects to my physical wellbeing as a consequence

A short Mestinon trial did work as did ice pack on very light ptosis


But it wasn´t any psychotherapy, good attitude, diet, exercise program or medication that changed things.

It was as if somebody pulled the plug and it took 2 years for the dirty bathwater to empty out.

Recovery continued in slow motion as if from a serious myasthenic accident yet with spreading continuing on its own agenda
to other myasthenic muscle sets but in a lighter & gradually fading manner.


All is now quiet on the myasthenic front........


Thank you :heartthrob:

so glad to hear you are doing so well!!!! So it was all mestinon, no IVIG or steriods or anything else?? that is great!!!! Gotta say I'm jealous!!!- especially of the normal feeling muscles and the prediction of how you will feel in 2 days!!!

I'm so happy for you. Reminds me of when I started this journey. I talked to a local man on the phone and he told me the story of having IVIG and a complete remission. At that time I thought it would work for all of us. Oh! was I wrong.

I just pray this sticks for you. It gives all of us hope.
Mike:grouphug:

So glad to hear this! Sounds like a dream come true.

I am so happy that you are doing well!!!

Are you taking the mestinon now? If so, what dosage?

When I first starting taking Mestinon I felt great. One word of advice though, don't over work your body. I felt so good that I thought I could do everything that I couldn't do before and I soon found out I couldn't do everything I used to do. You might want to try using your muscles slowly and see how you feel the days following.

So glad you are doing so much better. What is your dosage schedule for the mestinon? Are they panning any other medications or treatments?

kathie

Bny - Thanks! I think if it were true MG then surely I wouldn´t feel this good!
You are not supposed to be able to access your original stamina pre-MG once you contract this disease.
I didn´t start Mestinon until the worst peak was already over.

Mike – I was still worried in which direction this should all go until November.
I most certainly did not think my symptoms would ever ease up 2 years ago...

Glad I can be of some hope.....to which patient population I am not entirely sure – hopefully not the wrong one!

Limpy – I´m certainly not deserving – just lucky this time round...

Celeste – I haven´t taken Mestinon for weeks. When I first took it I actually felt like I was defying gravity and I wanted to cry
with this little reminder of how you´re supposed to feel when muscles don´t weigh you down like concrete any more.
I stopped taking it because I was already starting to feel better on my own and could do nothing to stop that process.
As though the muscles began generating their own strength and had more power than the Mestinon itself. :Dunno:

Quandry – They have definitely taken their time but muscles have started behaving themselves in an appropriate and
positively exponential manner. A bit like your analogy of the rock once it starts gaining its momentum :)

Kathie - thank you. I probably could have done with that stronger medication during my worst year, now I definitely don´t need it.

I´m not a typical MG patient with positive tests - or even a typical´atypical´MG patient to take any example from at all,
But still, thanks for sharing my joy with me. I really do think that there won´t be any one else who can truly begin to understand
what it feels like to end up in a myasthenic straight jacket, and then what it might possibly feel like to get out of one.....

:heartthrob: