Hi,
Im probably confirming what I have already worked out. But the Drs have destroyed my belief in myself so I have to take advice from others to confirm what I already suspect.

Yesterday I wasn't too good. I had problems with my eyes not being able to track things properly. Felt quite weak. Then around 4pm started to feel quite breathless, it progressed to the point where I honestly felt like I was going to pass out. Husband realised that I was pulling a fast one by telling him I was ok and gave me three mestinon, as he knows when Im that bad I need 3 in one go. After 45mins I came back to life but was exhausted, my ribs hurt, not agony, but uncomfortable.

Today my ribs are still uncomfortable, but my breathing is fine. Im tired and weak but am able to move at own pace etc. Are my ribs hurting due to the exertion of the episode yesterday. I don't think they went into spasm as my back does that and it wasn't that painful, just increasingly uncomfortable.

I have got a pulse ox comming through Amazon tomorrow.

Did peak flow checks half hourly. Initially ok but just before the mestinon dropped to 200. It was pretty scary stuff.

What made me laugh though is once the mestinon kicked in my husband says (as he was with me at the drs last week) "Its a bloody good job those mestinon don't work, I don't know what we would have done!"

I am ok today just taking it very very gently! So no one panic please!!!

Love
Rach x

Rach, that must have been scary the ribs hurting could be from the extra work you were putting into breathing {you know better than that} ALWAYS take your mestinon, YOU know your body and know when you need a boost. Don't let the Dr's make you feel you are wrong, YOU are right as you know yourself. Dr's always seem to try to make us feel dumb when in fact it is they that don't know what is going on. Always trust yourself!

So scary Rach, hope you don't have another episode like that ! Must have scared hubby also, our spouses suffer with along with us, so sad. I am glad you are doing a little better today.
Take care
Mary

Hi,

I had taken my mestinon but only 2/3 hours before this happened!!

It was scary stuff, the only way I can describe my ribs is like Ive had a really bad cough, they are aching!

Yeah it was pretty scary and I think next time I will call an ambulance regardless, as it could have got worse.

Taking it easy today, have been on top of the mestinon dosing at 120mg around every 3.5 hours just to make sure!

Thanks for your replies.

Love
Rach

wow. sounds like almost crisis. this is a somewhat new world for me. i can actually feel when my mestinon is wearing off. i've timed it and max duration for me is 5 hrs.. i try to dose every 3.5-4 to stay asymptomatic. my doc and i experimented on dosage and i've settled to 90 mg.. he told me that was still safe. hope you're feeling better.

Rach, Did the doc say to take 120 mg? That's a wee bit high, although I know that some people can handle it. My neuro said the same thing MH's did - 90 mg. is a good place to stay at.

I'm glad you're getting that oximeter. Then take photos or videos of it! Why do we have to "prove" this stuff to doctors, especially when you've already proven it with the oximetry.

You just take it easy. I agree too that you sound like you are nearing a crisis. A peak flow of 200 is VERY low. I would bet your arterial blood gas or chemistry (like bicarb/Co2) is off too. What is your normal peak flow? Here they say to go in if it's nearing 1/2 of what it is normally.

I truly do not understand what part of a person's soul gets buried into their subcranium, or lower, in order for them to treat another human being is such a reprehensible way.

Annie

Hi,

my peak flow is normally between 350- 400. I have been told to go in if it goes below 200.

Ive been on 120mg for ages, I up and down the dose as and when required. Sometimes I know 60mg is enough, sometimes like yesterday I took 180mg in one hit to get me out of the situation.

I try not to take it in the evening as it stops me sleeping, although if Im rough I will take it but I try and stick to 60mg.

My neuro knows I take 120mg, but he reckons I dont respond to it anyway. Thats why I need to get to France!

Thanks
Im still a million times better than yesterday!

Love
Rach

Rach,

wow.........I'm so glad you are feeling better.
I'm also glad you have a great husband, who seems to have a good sense of humour, just a pity you have to think this way isn't it.
take care of yourself
Kate