BEFORE
RIGHT EYE PTOSIS
INABILITY TO DRY HAIR
SEXUAL DYSFUNCTION
SLURRED SPEECH( UNKNOWN TO ME )
PRESSSURE ON CHEST
AGGRESSIVE SHORT TEMPERED


AFTER
NO PTOSIS
ABILITY TO DRY HAIR
STILL SEXUAL DYSFUNCTION
SLURRED SPEECH STILL NOT NOTICEABLE BY ME BUT MY WIFE
PRESSURE ON CHEST WHEN STANDING
UNABLE TO KEEP HEAD UP WITHOUT GREAT STRAIN ON ALL UPPER BACK,SHOULDER AND CHEST MUSCLES.
BLADDER PROBLEMS
BOWEL PROBLEMS
MULTIPLE INFECTIONS
CATARAKS IN EYES
UNUSUAL MOVEMENT OF EYE PRESCIPTION
VERY AGGRESSIVE BEHAVIOUR INTOLERANT OF OTHER PEOPLE.
NEED TO MICRO MANAGE EVERY SITUATION DRIVING MY WIFE AND OTHERS MAD.
NON STOP CHATTER ABOUT CONDITION
NEED TO VOICE MY OPINION STRONLY ABOUT EVERYTHING.
FEEL UNSAFE WALKING WHEN I CAN,NORMALLY PRESSURE BUILD ON NECK,SHOULDERS,BACK AND CHEST IS SO LARGE i CANNOT WALK AND BECOME VERY AGITATED AND MAD AT THE LEAST STRESSER.

TINGLING DOWN LEFT ARM PATICULARLY FROM NECK TO FINGERS.
SAME AREA SORE TO TOUCH ALONG A LINE FROM SHOUDLER TO FINGERS
DRY SKIN WORST ON BACKSIDE.

I WONDER WHAT OTHER DISORDER WOULD SEE THIS AS AN IMPROVEMENT.

AS A RESULT OF THIS REASSESSMENT I HAVE SO FAR CUT PRED FROM 60MG DAY TO SO FAR 15MG OVER 2 WEEKS
PTOSIS NO
STRENGTH YES
REPEATABILITY YES
NECK STILL A PROBLEM
AT 15MG AND 60MG
AGRESSION STILL A PROBLEM
SEXUAL DYSFUNCTION UNTESTED
MESTINON REDUCED TO NIL WHILE ON TAPER
NO CHANGE AS A RESULT

NEXT NEURO APPOINTMENT 14 MARCH 2010 BRITTISH NATIONAL HEALTH SERVICE
NEW GP
REFERRAL REQUESTED WITH GP TO SPINAL CLINIC
REFERRAL REQUESTED WITH GP TO URINARY CLINIC
REFERRAL REQUESTED WITH GP TO LUNG CLINIC
TREDMILL TEST PASSED WITH FLYING COLOURS
REFERRAL MADE BY GP TO EYE CLINIC

2-01-10
reduction to 10mg pred planned today
15yesterday
felt exciteability in my arms but no other effects
neck less pressure when walking
treating it seperately with
2*8mg codeine/500mg paracetomol for pain
will try 2*15mg /500mcparacetomol today as pain less but still there
had a great afternoon in town yesterday with my wife no crowds.
Bed early 9:00pm
slept to 9:00am
impossib;e before

ANOTHER GOOD DAY
2*15/500mg codeine/paracetamal worked for nrck pain but extra codeine did make me feel sleepy late afternoon.
godd muscle strength ,good repeatability.
full vitamin regime stated as per previous recommendationd for mg .
did not take yet potassium supplement but will start today as I had night cramps in my leg muscles.
My brother is over from Boston and I am taking his blood pressure medication to be replaced on monday by my gp as it has reduced by high blood pressure.
bed 1:00am up 08:00am
solid sleep.
reduction today to 5 mg pred
full vitamin
mestinon as req
oh what a wonderful day!

I am glad to hear it!

PMC,

I relate to these things! I know that it's not funny, but I had to laugh about the 'non-stop chatter about condition' and the 'micro-managing' to the point of driving others insane. Sometimes, I want to say, 'ah...will ya shut up!' to myself when I hear myself talking about Myasthenia Gravis.

I get really sick of hearing myself saying those words, especially 'cause no one knows what I'm talking about half the time. I'll bring up things I've learned about acetylcholine, or molecular mimickry, or 'other antibodies at work' to friends/family, and the realization interjects that this is probably really boring for them (usually when the eyes start to glaze over).

I take comfort in picturing the day when MG isn't on my mind 24/7- then I'll know that it's not affecting my life as much as it is now, at least on that day.


Nicky

P.S. I'm glad, after reading your posts lately, that you are doing much better!

I know what I am doing now goes against all I read about neuros but I feel their lack of involvement in discussion of what is my body has forced me down this route.
I feel infinitely better today and do feel in control of my condition.
Am I in remission I do not know ,all I know is at this moment I feel good and apart from my neck which I am working on as atension headache i have no other problem areas today.
5mg of pres mestinon only if I feel I need it.

It may drive others crazy but it is in the micro-managing that I find the most help and the most sanity for myself. Just taking the medicine only helps some, but the best solution is in the exact details.

So many things to micromanage with MG but it is worth it. I still haven't worked out all the details since so many things effect MG, but I do think I have the big items figured out.

This is the place to talk about micro-managing MG.

You're totally right, Desert...Micro-managing is definately key, and totally reasonable...I think that it's my constant talking about MG that drives some people in my life to distraction...

I think that they understand why I talk about it so much, just because it's had such a huge impact on my life, but they don't understand what I'm talking about often...You're right, that here is the best place to share, and to not worry that no one understands.

PMC, I think that it's so great that you're documenting your progress and seeing that when something doesn't work, it has to change. It's excellent that you're such a great advocate for your own health and have taken the wheel in your own care.

I have the same problems as you in many ways, as the prednisone causes me weakness, pain, cognitive/mood issues, poor healing (I think that my sternum has still not healed completely, 5-months post-surgery), high glucose, and the list goes on. Good for you that when you saw that things weren't working, you took charge and are now feeling better!

most neurologists are not aware of it, although they know that in some patients there can be some initial worsening of their symtpoms, before they start to do better.

and it is good that you trusted yourself and what you feel more then what you were told you should.

I hope that you will eventually recieve treatment that will work for you.

adjusting to this illness, and the way it affects your life, takes a while and it is quite normal to try and find what makes your life easier, even if it seems like micromanagement to some people.

alice