[PMCPMC]

Originally Posted by Pat 110

Hey Patrick,

Sorry to hear about your chest infection and hope you start feeling better soon. Take care.

Hugs,
Pat

My belief I am under the control of the consultant for MG and not GP nor Accident and Emergency.
Therefore met registrar told him my problems,cried a little and got a movement foreward.
I am back to mestinon 4 * 60mg during the day,nothing at night
Predisone 60mg in the morning .
Realised when I was in A&e on sunday It had started working the day before .
All the chest pressure was coming when walking from the fact that my neck muscles at the back of my neck are weak giving rise to pressure being put on all other muscles that can hold the head up.
Got agreement to use a soft neck collar to support my head until my next appointment on Seventh december .it is working well.
no mestinon problems .
Predisone quite obviously working well but leaving me open to numerous infections.

[PMCPMC]

Originally Posted by PMCPMC

My belief I am under the control of the consultant for MG and not GP nor Accident and Emergency.
Therefore met registrar told him my problems,cried a little and got a movement foreward.
I am back to mestinon 4 * 60mg during the day,nothing at night
Predisone 60mg in the morning .
Realised when I was in A&e on sunday It had started working the day before .
All the chest pressure was coming when walking from the fact that my neck muscles at the back of my neck are weak giving rise to pressure being put on all other muscles that can hold the head up.
Got agreement to use a soft neck collar to support my head until my next appointment on Seventh december .it is working well.
no mestinon problems .
Predisone quite obviously working well but leaving me open to numerous infections.

FOT TO MENTION THE PREDISONE WILL NOT LETME SLEEP EITHER AND FOR TWO DAYS THERE DID NOT GET ONE HOUR .
EVENTUALLY HAD TO TAKE SLEEPING TABLET LAST NIGHT ZOPICIONE 7.5MG.
SLEPT PORBABLY WITH NO REM SLEEP AS I HAVE NO DREAMS THIS MORNING BUT THE TIREDNESS IS MUCH REDUCED.
i KNOW i HAVE SLEEP APNIA FROM A HERNIA OPERATION TWENTY YEARS AGO.
I WAKE NORMALLY FREQUENTLY BEFORE THIS CONDITION AND CANNOT BREATHE BECAUSE THE LITTLE FLAP ENTRANCE TO MY LUNGS HAS STUCK DOWN AND STOPPED ME BREATHING.
I USED TO JUMP OUT OF BED IN BREATHING CRISI GARGLE SOME WATER AND IT WOULD RETURN CANNOT DO THAT NOW SO MY WIFE WATCHES ME AND HAS WATER WAITING .BIG STRIAN ON HER AS SHE ALSO DOES CLASS ROOM ASSISTANT DURING THE DAY KIDS WITH SPECIAL NEEDS .WATERFORN THREE NGHTS 5-9 EACH WEEK MINIMUM.
NEEDS HER SLEEP.

[PMCPMC]

Originally Posted by PMCPMC

My belief I am under the control of the consultant for MG and not GP nor Accident and Emergency.
Therefore met registrar told him my problems,cried a little and got a movement foreward.
I am back to mestinon 4 * 60mg during the day,nothing at night
Predisone 60mg in the morning .
Realised when I was in A&e on sunday It had started working the day before .
All the chest pressure was coming when walking from the fact that my neck muscles at the back of my neck are weak giving rise to pressure being put on all other muscles that can hold the head up.
Got agreement to use a soft neck collar to support my head until my next appointment on Seventh december .it is working well.
no mestinon problems .
Predisone quite obviously working well but leaving me open to numerous infections.

The neuro registrar wrote the dosages on a scrap of paper whick Margaret ,my wife had come across in my jacket .
I had assumed he wanted me back to 4*1 tablet of sixty during the day and none during sleeping hours but the scrap says 90mg 1.5 tablets four times per non sleeping hours

[PMCPMC]

Originally Posted by PMCPMC

The neuro registrar wrote the dosages on a scrap of paper whick Margaret ,my wife had come across in my jacket .
I had assumed he wanted me back to 4*1 tablet of sixty during the day and none during sleeping hous but the scrap says 90mg 1.5 tablets four times per non sleeping hours

Slept six hours with sleeping tablet zopiclone 7.5mg.last night
predisone 60mg
mestinon 90mg 4 times in waking hours
felt very weak today .
Organised myself as a scooter driver with shopmobility to avoid walking around town .
While walking even with the soft collar neck support the muscles in my upper back and chest increase the pressure on my breathing .
http://www.shopmobilityuk.org/
wonderful organisation with generally free equipment for use .
realised on this type of transport regular trousers let in too much cold air on a wonderful sunny,cold saturday so bought some double layer waterproof trousers with warm interiors .organised sweet !!!
Had my eyes tested again and new lenses ordered .
Sent an email to department of motor vehichle licencing informing them of mg condition to keep insurance correct on my DLA Car.
My employer is considering a written warning already for ineffiency because of my absence in preparation for dismissing me in time .What a wonderful organisation.!
I had a call from the lady who sent the letter and after great difficulty speaking to her she then said send a letter to explain everything you just told me with difficulty over the phone .
Talk about stressing you out.!The letter raising the issue of a warning letter arrived this morning .
I will be forewarding it on to my local Mp and of course the union for this harassment !
The welfare officer is coming to see me on Monday from the same organisation to help?

[PMCPMC]

Originally Posted by PMCPMC

Slept six hours with sleeping tablet zopiclone 7.5mg.last night
predisone 60mg
mestinon 90mg 4 times in waking hours
felt very weak today .
Organised myself as a scooter driver with shopmobility to avoid walking around town .
While walking even with the soft collar neck support the muscles in my upper back and chest increase the pressure on my breathing .
http://www.shopmobilityuk.org/
wonderful organisation with generally free equipment for use .
realised on this type of transport regular trousers let in too much cold air on a wonderful sunny,cold saturday so bought some double layer waterproof trousers with warm interiors .organised sweet !!!
Had my eyes tested again and new lenses ordered .
Sent an email to department of motor vehichle licencing informing them of mg condition to keep insurance correct on my DLA Car.
My employer is considering a written warning already for ineffiency because of my absence in preparation for dismissing me in time .What a wonderful organisation.!
I had a call from the lady who sent the letter and after great difficulty speaking to her she then said send a letter to explain everything you just told me with difficulty over the phone .
Talk about stressing you out.!The letter raising the issue of a warning letter arrived this morning .
I will be forewarding it on to my local Mp and of course the union for this harassment !
The welfare officer is coming to see me on Monday from the same organisation to help?

Every evening I visit my 93 year old mother two miles away from my home in a sheltered dwelling ,a small apartment .
As I left my house the temperature was at freezing point and I felt as if I was looking through a fog thinking it was the cold air on my glassenot further of it.
As I drove along on cruise at 30 mph I heard aan almighty bang and it shocked me.
It took me a few minutes to work out what was wrong.
I then observed that my wing mirror housing was gone .
I had obviously now realised that I had struck while driving
my wing mirror on that of a parked car.
No More Driving!!!!!!!!!
Went to A&e at 21:00pm as required by my consultant .
result a new infection don't know where yet to contact family doctor.
Refferral to eye outpatient clinic for follow up on double vision and loss of sight below first three lines .
Oh well more changes !!!!!!!!!!

[PMCPMC]

Originally Posted by PMCPMC

Every evening I visit my 93 year old mother two miles away from my home in a sheltered dwelling ,a small apartment .
As I left my house the temperature was at freezing point and I felt as if I was looking through a fog thinking it was the cold air on my glassenot further of it.
As I drove along on cruise at 30 mph I heard aan almighty bang and it shocked me.
It took me a few minutes to work out what was wrong.
I then observed that my wing mirror housing was gone .
I had obviously now realised that I had struck while driving
my wing mirror on that of a parked car.
No More Driving!!!!!!!!!
Went to A&e at 21:00pm as required by my consultant .
result a new infection don't know where yet to contact family doctor.
Refferral to eye outpatient clinic for follow up on double vision and loss of sight below first three lines .
Oh well more changes !!!!!!!!!!

After examination have catarachs on both eyes mild so far brought on by the pred
what next eh!
AS posted earlier my employer deal with long term absense by keeping the emotion out it and takes about you being a anineffienct human machine or an efficient one .
An effient one is one who is work signed off from its doctor and reporting to its supervisor and an inefficient machine is one stting at home.
I signed off from from GP YESTERDAY HAVING BEEN SENT A LETTER WARNING OFF POSSIBLE ACTION BEING TAKEN LEADING EVENTUALLY TO DISMISSAL A SAN INEFFIENT HUMAM MACHINE.
i PRESENTED MYSELF AS AVAILALBE FOR WORK AND THEREFORE EFFIEICIENT .
WATCH THIS SPACE!!!!!!!!!!

[PMCPMC]

Tried to lie down on my 93 year old mother's three seater,chest wheezing and difficult to breathe boths.Try first to lie on right side then left side,left side worst.
Have to arrange for Gp referral to Hospital for PR bleeding .
As She is going to A&e decide to go myself again.
Wiat six hours for the ambulance to pick her up
Now 21:00pm in the evening .She gets examined by 23:00ysical tests by Excellent A&E dcotor(has experience of MG patients)
Nebulisor given of sabutinol
Identifies higher white cell count and chest infection .
Put back on previous antibiotic for chest infection.
Ah WELL!!!!!!!!!!
03:00pm mother transferred to city hospital from royal hospital
Speak to A&E doctor about her at 05:30
Says Pr bleeding not constant nor serious enough for taking her in.
Discharge )6:00am
She is made to wait seven and half hours for ambulance to take her home
She comments they ignored me ,treated me no better than a dog in the street and I am a blind 16year old trapped in a 93 year old body
I get blood test ,o2 tests ph

[AnnieB3]

Patrick, I am so frustrated by this post I don't even know what to say. I'm sorry both you and your Mom aren't getting the care you need. I am powerless to do anything but say I'm sorry and hope you get to feeling better soon.


Annie

[PMCPMC]

Originally Posted by AnnieB3

Patrick, I am so frustrated by this post I don't even know what to say. I'm sorry both you and your Mom aren't getting the care you need. I am powerless to do anything but say I'm sorry and hope you get to feeling better soon.


Annie

saw neuro today strengths all ok including neck muscles for his liking.
says while on pred will get infections
he took blood tests to check for enzenes present to change to another drug .
margaret came with me to better understand what was going on.
A differnt person,neurotic,angry.never sleeps.
all pred side effects he says
was surprised by catarachs early onset
did not want to go to higher pred hence change to something else
see again 14 march

[AnnieB3]

Patrick, Cataracts can also be caused by a B12 deficiency. Please ask him to check that and your folic acid levels!!! Completely fixable situation by taking extra B12, preferably sublingual (under the tongue) methylcobalamin (B12).