Hi,

I apologise in advance for venting! I hope you enjoy!

I just thought I would review my footage of my tensilon test as I popping it in the post tomorrow. Just out of interest I watched and timed when the tensilon started to provoke a reaction to when it finished. The whole thing lasted just over 2 mins. I watched from when you can see my top lip start to move as it wasn't before and when the ptosis comes back.

I was informed at the hospital that this effect had only lasted less than a minute.

I have also spent a bit of time looking up the tensilon test this evening. ( yes you guessed it the cricket is on AGAIN!!!). From what I have read from several sites including one for UK gps is any change in weakness is a positive result and can last several minutes.

What are they playing at?

If I can find this info out why can't they? Grrrrrrr

My best mate said on the phone today Cortical Plasticity what a load of Horse **** they've fobbed you off again. I hadn't discussed it with her as I didn't want to look like I was clinging onto MG.

And another thing ( its ok Im nearly Done - and mum if you read this before I speak to you tomorrow Im fine just angry!). The mestinon I can take "if I feel better on it, as its just a stimulant...." my neuros words not mine, made the difference of me not being able to walk to being able to walk after 120mg and one hour. You may wonder as I do how I manage to maintain this consistent placebo effect? It also resolved my ptosis. Magic.

I hope you can put with me! No heel walking for me tonight. Sorry if anyone wanted a race!! LOL

Thanks I do feel a bit better now, hubbys pleased as I have been ranting all evening about it.

Love
Rach x

venting is also a form of therapy!! its cheap with few side effects except on those who feel that they need to find a solution. my sweet hubby of 37 yrs finally understands the difference between venting and asking for solution to a problem that i can't seem to slove. hope the day is a good as it can be for everyone!!!

Thanks Xmas!

I actually reviewed the footage and put a stop watch on. The effect lasted over 3 mins!

I would post it on you tube if I didnt look like a beached whale!!

Cheers
Rach

Hi Rach,

vent away, I think its better to vent here, where we can understand each other, rather than vent to our families, I think mine get upset at not being able to do anything.

take care
Kate

Rach, Caffeine is a stimulant. Speed is a stimulant. I think your doctors are on stimulants. Or they are on drugs that cause someone to be out of touch with reality.

Mestinon is a cholinesterase inhibitor. It never has been nor will it ever be a stimulant. It's one and only job is to keep the enzyme called acetylcholinesterase from "cleaning up" acetylcholine; so we have more acetylcholine in our neuromuscular junction to use and for a longer period of time. And in case they say it's just a benign drug, it can cause a cholinergic crisis where you can't breathe. If someone with a normal amount of acetylcholine takes it - like your doctors - they will be drooling and falling on the floor, unable to move or breathe.

Did any of your doctors/neurologists actually get a medical degree? Do they have a "Physicians Desk Reference" or even access to the internet so they can look these things up in order to not look like complete fools?

I swear I do not understand how they can so screw up your health care. It's reprehensible.

I hope someone will grab a clue and diagnose you soon.

Annie

My mum told me to have a nosey as someone called annie had written a brilliant response! She wasn't wrong. Well done mummy!

I dont think they have the reference book you quoted, but they do have one called "how to ******** a patient when you are out of your depth" I believe its a best seller!

The point you make about mestinon has been my point for the last two years.

I think they got their medical degrees from the internet!

Cheers you really really made me chuckle!

Love Rach

Vent away we all do it and we all listen. Once again Annie is right on target!