[PMCPMC]

predmsdlone(steriod)

60 mg first thing in the morning.

mestinon 60mg

first thing in the morning then by my watch alarm every four hours.

pro-banthine(propantheline bromide) 15mg

every time I take mestinon
for stomach protection.

fastab(lansoprazole) 30 mg

first thing every morning
for stomach acid reduction while on steroid

adcal-d3(calcium carbonate)

first thing each morning and last thing at night.
bone making

alendronic acid 70mg

once per week for bones on a friday

aspirin 75mg

once in the morning
heart

alipurinal
once in the morning for gout

simvastatin 40mg

last thing at night
for cholesterol of 7.0

zopiclone 7.5 sleeping tablet
last thing at night

asthma preventer 2 puffs

for ashma
last thing at night.

[PMCPMC]

wheni was taken into hospital for only the second time in my 58 years of life,I realised I had come to a new low in my life.
I was fifteen stone thirteen pounds.
As an adult my lowest had been 11 stone seven pounds.
I was at a crossroads.
Do I setup my weight regime for a new longer life or decline inearly death.
I chose the former.
The RVH Hospital meal menu made it easy with listing of three or four choices .
I decide to return the food to real food .
Nothing reprocessed.

Breakfast
Porridge or weetabix
pint of cool mountain water

mid morning
cheese
pint of water with no cal contentrated juice

lunch
fruit
a banana for potassium and fibre or bowel movement.
an apple or other fruit
pint of water and no cal juice

dinner
midsize plate
chichen,turkey,pork,lamb,fish as from the animal or fish
pint of water and no cal juice

evening
more pints of water and no cal juice
monkey nuts from the shells(no salt) for roughage for bowel movement.

my weight now after four weeks is fourteen stone
continuing to loose one pound per day

target weight eleven stone seven pounds

then adjust quantities to aintain balance

How do I stick to it,easy I must .
No hunger pangs at all.

I have lived a life of fast food and nightly two or three glasses of wine.
I have had a life where I sail to great heights mentally and then next day be in the depths of despair.

Since changing my food regime my mood is happy,no huge highs or lows.

[AnnieB3]

Hey, Patrick! Thanks for telling us your name.

First, way to go on losing weight and eating better. It's such a hard change. I did it back in 1997 and felt better too. I mean, changing my diet. The weight issue continues to be difficult due to inability to exercise much.

Before I comment on any of your drugs, know that I am NOT a medical professional. AND you should not make any changes to meds without speaking to the doctor who prescribed them!!! Very important, especially with Mestinon. Mestinon can make you better but too much can make your MG worse; making you weaker.

I'm a little concerned about some of your meds! Do you have one pharmacy for all of them? I'm surprised they haven't "red flagged" some of them.

Sleeping pills can be taken with MG but you have to be careful. They probably should've done a sleep study beforehand to make sure you don't have sleep apnea. If you do, sleeping pills could make you stop breathing! They can make breathing muscles even weaker.

Those "statin" drugs (cholesterol) can make MG worse, so be careful with that. I don't know the numbers you are using for your cholesterol - they are different here in the states. Do you know the normal range for cholesterol there?

Most asthma drugs are taken twice a day, like Advair or Flovent. And Mestinon can actually make asthma worse. It may be what started my asthma.

Do you take vitamin D too? If not, you should! D and calcium work together and many people are deficient in D.

Have you ever been tested for celiac disease? It's so rampant in Ireland and England - and in other Northern Europeans.

Has your neuro discussed going down on the amount of Pred you take at some point? Watch out for any signs of Pred-induced diabetes!

If you have an internist/primary doctor, you may want to list all these meds and go over them. One of the biggest causes of injury and death are drug interactions.

I would make one other comment about your diet. It's best to have carbohydrates with a protein, especially on Prednisone. Cheese is not a very good protein, not really. Nuts and seeds are better. I personally like almonds and pumpkins seeds. And since you are on an acid blocker, you may not digest nuts well enough. Nut butters may be easier to digest. Again, that's so great that you are making those changes. I felt better too.

It takes awhile to learn about MG. Here are a couple websites, though there are many others.

www.myasthenia.org
www.mdausa.org

Annie

[PMCPMC]

Originally Posted by AnnieB3

Hey, Patrick! Thanks for telling us your name.

First, way to go on losing weight and eating better. It's such a hard change. I did it back in 1997 and felt better too. I mean, changing my diet. The weight issue continues to be difficult due to inability to exercise much.

Before I comment on any of your drugs, know that I am NOT a medical professional. AND you should not make any changes to meds without speaking to the doctor who prescribed them!!! Very important, especially with Mestinon. Mestinon can make you better but too much can make your MG worse; making you weaker.

I'm a little concerned about some of your meds! Do you have one pharmacy for all of them? I'm surprised they haven't "red flagged" some of them.

Sleeping pills can be taken with MG but you have to be careful. They probably should've done a sleep study beforehand to make sure you don't have sleep apnea. If you do, sleeping pills could make you stop breathing! They can make breathing muscles even weaker.

Those "statin" drugs (cholesterol) can make MG worse, so be careful with that. I don't know the numbers you are using for your cholesterol - they are different here in the states. Do you know the normal range for cholesterol there?

Most asthma drugs are taken twice a day, like Advair or Flovent. And Mestinon can actually make asthma worse. It may be what started my asthma.

Do you take vitamin D too? If not, you should! D and calcium work together and many people are deficient in D.

Have you ever been tested for celiac disease? It's so rampant in Ireland and England - and in other Northern Europeans.

Has your neuro discussed going down on the amount of Pred you take at some point? Watch out for any signs of Pred-induced diabetes!

If you have an internist/primary doctor, you may want to list all these meds and go over them. One of the biggest causes of injury and death are drug interactions.

I would make one other comment about your diet. It's best to have carbohydrates with a protein, especially on Prednisone. Cheese is not a very good protein, not really. Nuts and seeds are better. I personally like almonds and pumpkins seeds. And since you are on an acid blocker, you may not digest nuts well enough. Nut butters may be easier to digest. Again, that's so great that you are making those changes. I felt better too.

It takes awhile to learn about MG. Here are a couple websites, though there are many others.

www.myasthenia.org
www.mdausa.org

Annie

Thanks annie for your comments.
In the Uk consultants can only be seen onthe National Health service by hospital appointment .My first outpatient appointment is seventh of december.
AS I said earlier in another post I presented at accident and emergency with chrushing chest pain which he eventually missed the bulbas nature of my condition referring me to heart and lungs specialist for further work outside his field.
General pratitioner approved the mestinon change on the basis that my breathing deteriorated from four hours onward .
The consultant had sent me home from the hospital with mestinon every eight hours.
I have used the sleeping tablet not in continuous use but on an as used approach.
cholesterol level normal is below 5 which mine had been in May 2009 during a previous blood test
on the asthma side I believe from my experience so far this may be an earlier mis diagnosis from the GP .
The inhalers do not help my breathing when I have the two feet dancing on my chest pain but mestinon clears it up.
The food post was completed in a hurry and I omitted to say that cheese is an occasional luxury .
I also omitted to say that the evening meal would have multiple vegetables with it except potatoes which put weight on me.
In hospital and since I have now dropped all sweet foods like chocolate snacks etc.
Celiac disease I met an older man in hospital with this and he told me a choke about it.
One man to another said he was a celiac and the other replied I don't mind speaking to people with another religeous persuasion. I myself he said am a methodist.
Funy guy ,great singer very positive guy but now diagnosed with terminal cancer at 85 years of age.
I have always known gluton products do not agree with me and I put on weight when I eat them.
I don't miss it on my new regime.
Monkey nuts as I describe them are peanuts.
They are used for bulk and it working very well with no constipation which is what I had before I used them.
Initially I had been having some muscle cramps but the bananas stopped that I will post again about my vitamin regime which also has changed dramatically.
Still building the content day by day.

[PMCPMC]

made another mistake today took a KALMs
made up of hops 40mg
valerian extract 33mg
gentian extract 22mg
Went for a walk round supermarket and my head felt heavier than my body neck muscles under strain but evreything else ok.
Drop that but it calm me down

[AnnieB3]

Patrick, Don't mess with those herbs unless the are 1) researched fully and 2) gone over with your doctor.

Drugs are made from plants. The strength of any dose of an herb is hard to calculate. That's one reason drugs are made - to ensure consistency of dosing.

Valerian is a sedative and will indeed make your MG worse. And you really don't know if that means a little worse or it's sending you into a breathing crisis worse. Very dangerous.

You are still learning and I think the best lesson is what can happen to MG. That heaviness you describe can quickly - and I mean VERY quickly - turn into an MG crisis where you can't move or breathe. What if that happened while you were alone or driving? This disease can trick you into thinking you're "ok" when you aren't. You can get increased weakness so slowly that you don't realize how bad you are. Everyone can identify a sudden increase but it's the slow and steady increase that'll trick you every time!!!

I hope you will go over all your drugs with both your doctor and pharmacist. There could be interactions you may not be aware of too.

Just take it easy, okay?

Annie

[PMCPMC]

Originally Posted by AnnieB3

Patrick, Don't mess with those herbs unless the are 1) researched fully and 2) gone over with your doctor.

Drugs are made from plants. The strength of any dose of an herb is hard to calculate. That's one reason drugs are made - to ensure consistency of dosing.

Valerian is a sedative and will indeed make your MG worse. And you really don't know if that means a little worse or it's sending you into a breathing crisis worse. Very dangerous.

You are still learning and I think the best lesson is what can happen to MG. That heaviness you describe can quickly - and I mean VERY quickly - turn into an MG crisis where you can't move or breathe. What if that happened while you were alone or driving? This disease can trick you into thinking you're "ok" when you aren't. You can get increased weakness so slowly that you don't realize how bad you are. Everyone can identify a sudden increase but it's the slow and steady increase that'll trick you every time!!!

I hope you will go over all your drugs with both your doctor and pharmacist. There could be interactions you may not be aware of too.

Just take it easy, okay?

Annie

thanks Annie ,I am learning and following you advice.

[PMCPMC]

Patrick here,top of the morning to you,
I have been recently been diagnosed with MG.
I had found over the last six months I had had bladder problems made worse when I started taking mestinon every three hours for breathing difficulties.
I would rather breathe ,as I am now the best for thirty years and put up with the inconvience of bladder weakness.
I have while I am waiting on a uroligist taken to wearing a very smart slimline men's incontinenance throwaway underwear.
No more washing for my wife of underwear.
When the bladder overspills when full,no wet trousers .
I is certainly different but the concerns tend ot beall in your mind as noone knows what you are wearing and you are protected.
It has also led to sexual dysfuntion at the moment ,a little embarrasssing.
Thank god it is the internet I am saying this on.
I am afraid poor Penis has all but disappeared inside and hence when using the bathroom I sit down now like a women.
It is embarrassing for us men but better to breathe and live

[PMCPMC]

give him computer generated list of problems as follows:-

1. Medication updated on computer prescriptions for blister packs. cannot remember all meds making mistakes
2. Examination 12:00 pm last tablet of mestinon here is my current position .please exam.
3. heavy pressure on my diaphragm
4. neck muscles under pressure to keep head up
5. lower limbs no flexibility
6. fingers cannot write more than a few lines
7. cannot lift arms above my head
8. When bladder is full it releases no control.
9. presciption for throwaway pants.
10. Need assessment for care as I can do nothing for myself.
11. Need confirmation of condition for housing executive to apply for sheltered dwelling. We are probably going to loose our house to reprocessions.
12. Dark thoughts of suicide have entered my mind.
13. heart at times racing

picked up on no 12 and prescribed citalopram and referred me to mental health team for assessment .
refeered to incontinence team and for assessment by social services team as currently i can do nothing for myself .
They will llok at home help and medication supply.
Will wash and dress you.

[Nicknerd]

PMCPMC,

I'm sorry that you're having a tough time. Please let us know when you're feeling depressed- we're here to support you! Don't let this illness get you, you will have more control over it eventually!

By the way, you mentioned something that stood out to me. You said that your lower limbs have no flexibilty. Do you mean that you have reduced reflexes? You also talk about lack of control of your bladder and sexual problems. Has the doctor ever mentioned something called Lambert Eaton Myasthenic syndrome? Were you having problems with your bladder before starting mestinon? Myasthenia gravis does not cause problems with the bladder or sexual dysfunction, but Lambert Eaton Myasthenic syndrome causes those types of problems as well as muscle weakness that mainly occurs in the legs and arms. It can seldom cause ocular weakness, but usually starts at the legs. It can also causes the reflexes to be non-responsive.

Sorry to throw this your way. I'm sure that you have the correct diagnosis, but some of your symptoms are sorta worrisome in that they seem to point to that illness. I've never heard of Mestinon causing sexual dysfunction.

EDIT: I found someone else who experienced the same problem as you re. sexual dysfunction and mestinon. Just ignore my post about that other disease...Sorry if I confused/worried you!

Here is the link if you are interested: http://neurotalk.psychcentral.com/thread91129.html

Anyway, you can talk to us anytime you're feeling blue.