Hi Cooley! Welcomeeeeee! This site is great, the people here are absolutely wonderful and helpful, you can count on them to be your source of support! Am sorry it took sooo long for you to get a proper diagnosis, it must have been tough dealing with everything without any answer! Do hope you're getting all the care u deserve now, let us know if you hav any questions!!

Thanks for all the welcomes.

I am from Nova Scotia and I guess I'm not sure if I have mg yet.

Here is how it works in NS you go to GP. GP refers you to another (who is not a neuro) this guy is a cardiologist. Cardiologist refers you to a neuro.

Haven't seen the neuro yet.
Waiting for ach levels had it done first week in June blood was sent to the States.
Cardiologist was going to run tenslon test. He went to do it waited 4 hrs
for him to tell me they don't make the drug anymore. They stopped 1 year ago. So Cardio guy comes and tells me... I have MG
I have a Thyomoma.
I need to have my thymus out.
Having my thymus out will make me all better.
Puts me on 30mg mestinon 3 times a day.
Tells me to come back in two days to see him.

Well I went to see him looks at and says your better. I told him Iwasn't sure
My energy had improved some what. Length of time before I become tired has increased. He saysa well you should know if it's working by now and he was going to up my amount but now he is not. I have been on vacation for the last week I'll know for sure if it's working then.

Anyway I could go on. But long story short Cardio guy doesn't seem very informed about MG. Still frustrated a bit I mean it is what it is.
He didn't even know that heat or other drugs could make it worse.
And told me mestinon wouldn't do any harm to me if I was taking it and didn't have MG.

Waiting for ach results and to see neuro not even going to think about what this guy said. Am making appointment with GP to see another doctor other than cardio guy. I hope my GP can handle it.

The overall weakness in by has improved a bit sense Mestinon I haven't even been taking it for a week yet. But my left eye still isn't open as much as I would like it.

We'll see what is down the road maybe not MG. But the heat does make things worse and so does the cold we get one extreme to the other here in NS
LOL.

Hope your all well and maybe I'm in the wrong place after all.


Cooley

I just went on to the MGFA web site.

I read the some of the manual for health care.
The mestinon is working the way it is suppose to.
When I told my doctor that it stops working after a couple of hours then I crash. His response was that's not how it works and that I should feel better in general all the time. He was wrong.
He told me having my thymus out would make it all better. Cure me is what he said. Wrong again even less of a chance with a thymus issues.
I explained that I felt certain meds made me worse. I was given baclofen for last bad spell they thought I had MS. This made me worse. He gave me a blank stare and moved on to the next subject.

As well as several other issues...
I am going with this info to my GP.
I don't know if I should present this info to cardio guy or just let it go.

MG must be not a well known thing in Nova Scotia.

The neuro I'm seeing in October has a special interest in the area of MG hopefuly he has a better understanding than the doctor I'm seeing at the local hospital.

Little wonder why it takes so long to find out what's wrong.. I'm tired just thinking about it all..LOL

Maybe you can be lead to the proper channels in Nova Scotia through:

Muscular Dystrophy Canada – Atlantic Region

56 Avonlea Court
Fredericton, NB
E3C 1N8

Tel: 506-450-6322
Toll free: 1-888-647-6322
judy.spink@muscle.ca
www.muscle.ca

Judy Spink, Director of Services,
Atlantic Region

First off, let me say your dr sounds like an idiot! Mestinon is to be taken every 2-4 hours to help you feel better. When it wears off, you crash and feel awful again.

Not much is known about MG - in Novia Scotia or the US. I had EVERY symptom, yet it took a FULL blown crisis b/4 I was given the medical treatment I needed in order to STAY ALIVE!

Is there any way to get a NEW dr? One who actually knows something about MG? Someone who will acutally LISTEN? Sadly, women are overlooked when we complain of fatigue. We are considered neurotic or depressed.......it is truly sad!

Even if you DO NOT have MG, please check in with us. I know I love to hear from everyone. It makes my day!

Hang in there hon!

Erin

Going to gp Tuesday

I understand that there is not very much known about MG.

However that is what should be said by the doctor rather than BSing me. I can Understand a simple I'll have to look into it rather than a bunch of info that is not accurate.

I want someone who will at least take a few minutes to do that.

During my first appointment with cardio guy there was a student doctor in the room he went to draw the diagram on how the mecle reseptors get blocked and don't recieve the message they are suppose to. The student corrected him
he was giving me the wrong info.
My next appointment with him in office there was a new student he drew
the same diagram only this time he knew it all.
If he went as far as to look up the diagram he should have took a couple of more steps to look up the rest.

Anyway we will see how it goes with GP.

Lots of questions Mestinon seems to be working. I take it will I feel I need it
and my eye has opened back up.
I will continue to read here and ask questions till DX.

Hey Cooley,

Wow, how frustrating! It took me 2 years to be diagnosed and I know what that felt like. It sounds like your best chance for a diagnoses & treatment is with the neuro in Oct. Is there any chance your GP can get you an earlier appt. with him? Good luck on Tues. I'll be keeping good thoughts. Take care.

Hugs,
Pat

Thanks had to work Monday night 12 hour shift and I canceled my appointment.
I don't think I'm going to complain about the cardio doctor. I'm going to wait until I get all the facts in blood work (already have ct scan with thyomoma) and the nerve response test. Then if I have this I will request that the cardio doctor not me my go between for neuro in Halifax.
I was just ticked I'm tired of people who asume the know everything. No matter what proffesion you are in you still need to do a little research from time to time to know how to handle some siduations. .....I will wait for Oct. That's the way a free Health Care works here. And I'm fine with that. There are people with much more serious Health issues.