Angry....grrrrr!
 

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? :mad:

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:D

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

Love
Rach x:eek:

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:eek:

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

thank you 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 :D we all do it and we all listen. Once again Annie is right on target!