[PMCPMC]

SELF INDULGENT BUT HOPE IT HELPS OTHERS
I have just recently been diagnosed after presenting at A and E with heavy pressure on my chest like I was going to have a heart attack
Ecg was fine but o2 levels were low
Several weeks previous a girl who sits opposite me in the civil service in a call centre commented "do you you know by the end of the day your right eye is nearly closed each day.I thought you were having a stroke."
I checked it on the internet as ptosis of the eye a sign of of possible myasthenia gravis.
I had to go any way as an annual check to my opticions who immediately noticed the ptosis as I entered the room.
She gave me a letter for the gp
The Gp would have on the following tuesday following my entry to hospital on the friday night diagnosed mg from the blood tests.
The neuro saw me over the weekend and started me low dose prednisolone building to mgs a day by the time I left hospital after two weeks.
I have bone and stomach protection medicine to take with it .
With this I also was was started on mestinon 60mg every 8 hrs .
Before I left hospital I was doing some walking in the main hospital corridor and found the same heavness again.
Just last night I was late with the mestinon and the chest preesure returned and my throat felt as if it was closing until the mestinon kicked in after twenty minutes and cleared it completely after an hour .
I guess my diaphram is my weak muscle in this case

[PMCPMC]

I checked again today the throat tickle starts aroung four hours fifteen minutes .
After taking mestinon recovery starts in about 20 minutes and is fully recovered within an hour .
Because I was not sleeping in hospital at night I rarely got even with a sleeping tablet more than four hours sleep.
Now feeling I cannot afford to be asleep now more than four hours .
I am going to GP open surgery first thing in the morning.
At four hours fifteen today while I was doing my one task for the day in local store at the cafe tickle started and I could not speak properly to the assistant .recovery as above .

[ewizabeth]

Welcome to NeuroTalk PMC! It sounds like you're getting good treatment from your doctors. There's lots of good information here and people who have experience with MG as well.

I'm glad it wasn't a stroke, that's always a worry with so many diseases since they can look the same at times.

I remember when I had my first big MS attack and I immediately thought stroke, but it was affecting both sides of my body so I blamed my back next before seeing a doctor.

Anyway, I'm glad you found us. Take care.

[PMCPMC]

Originally Posted by ewizabeth

Welcome to NeuroTalk PMC! It sounds like you're getting good treatment from your doctors. There's lots of good information here and people who have experience with MG as well.

I'm glad it wasn't a stroke, that's always a worry with so many diseases since they can look the same at times.

I remember when I had my first big MS attack and I immediately thought stroke, but it was affecting both sides of my body so I blamed my back next before seeing a doctor.

Anyway, I'm glad you found us. Take care.

Thank you for your kind words

[PMCPMC]

I explained how mestinon had only lasted for me about 4hours .he replied that it is difficult to know what dose suits each individual.
He agreed at going foreward at 60g every four hours.
WE do have slow release approved for use in the uk so have set my watch alarm for every four hourseven during thee night.
The throat closing problem was a very white spotted throat infection.
now on a course of 500mg penecillin four times per day.
urine sample also taken for possible kidney infection .
I have to drink at least a pint of water per hour to stop sharp pain in my side.

[Pat 110]

Hey PMCPMC,

Welcome to the group! Maybe you will need to take the mestinon more often like every 4 hours. It's good you are going to see your doctor tomorrow so you can discuss it with him/her. Be sure to let them know about ALL your symptoms. I'm glad the mestinon is working for you. Good luck with your appt. and let us know how you make out.

Hugs,
Pat

[Pat 110]

Good to hear he changed the Mestinon dosage to every 4 hours. Sorry to hear you have a throat infection, but glad it's not anything more serious. Does he think the possible kidney infection is related to the pred? Feel better.

Hugs,
Pat

[PMCPMC]

I had already raised the issue of urinary track infection as part of a list of problems related to symtons that had arisen around the same time they were investigating the myasthenis gravis possibilty and so was on the to do list.
thanks for asking

Originally Posted by Pat 110

Good to hear he changed the Mestinon dosage to every 4 hours. Sorry to hear you have a throat infection, but glad it's not anything more serious. Does he think the possible kidney infection is related to the pred? Feel better.

Hugs,
Pat

[AnnieB3]

PMCPMC, Do you have an "informal" name? Welcome.

It isn't self-indulgent at all! When I first suspected that I had MG, another forum was invaluable for me to figuring it all out (plus finding a good neuro).

The amount of time Mestinon lasts is not "different for everyone!" It's basically a finite amount. It can differ depending upon someone's metabolism but this is how it works, according to the drug company, MG experts and my own experience.

Mestinon will kick in anywhere from 20 minutes to an hour. About 2-1/2 hours after taking it, it's effects will either begin to run out or run out completely. Most people have a good solid two hours of "extra acetylcholine" because of it. I know that the standard dosing is every four hours but some people do take it up to every two hours. I take mine every 3.

Of course, no one should change their dose amount or the frequency of it without consulting with the prescribing doctor! There may be some doctors who aren't as knowledgeable about it though. Work with your doctor, like you did, to figure it all out.

You are so lucky that you got diagnosed quickly. That's fantastic.

Annie

[PMCPMC]

Originally Posted by AnnieB3

PMCPMC, Do you have an "informal" name? Welcome.

It isn't self-indulgent at all! When I first suspected that I had MG, another forum was invaluable for me to figuring it all out (plus finding a good neuro).

The amount of time Mestinon lasts is not "different for everyone!" It's basically a finite amount. It can differ depending upon someone's metabolism but this is how it works, according to the drug company, MG experts and my own experience.

Mestinon will kick in anywhere from 20 minutes to an hour. About 2-1/2 hours after taking it, it's effects will either begin to run out or run out completely. Most people have a good solid two hours of "extra acetylcholine" because of it. I know that the standard dosing is every four hours but some people do take it up to every two hours. I take mine every 3.

Of course, no one should change their dose amount or the frequency of it without consulting with the prescribing doctor! There may be some doctors who aren't as knowledgeable about it though. Work with your doctor, like you did, to figure it all out.

You are so lucky that you got diagnosed quickly. That's fantastic.

Annie

Hi Annie ,
Patrick here,
thanks for your advice.
Learning a lot very quickly.
Mestinon every four hours even during the night,all alarms set on my watch,
has given me control over my breathing at no point under stress.
Still learning that I have the disorder and still think I can do everything I used to after the medication is taken.
Very often giving myself muscle strains and then wondering why I am sore.
Throat closing going.
Kidney infection also seems to being trated by the antibiotic.
Repeatable use of my neck muscles and then strain is hard to remember not to do as you use your head for everything.
I am left sided and find my left side and arm which I use normally a lot are the ones most coming under strain