Very cool! Here is a link to the conference program

https://na.eventscloud.com/ehome/2020mgfa/996348/

It looks very good! I was thinking this would be mainly for the research community but it looks like patients/caregivers will find value in it.

And here is the link to register (free):

https://onlinexperiences.com/scripts/Server.nxp?LASCmd=AI:4;F:QS!10100&ShowUUID=07D7F333-7640-46DB-B031-5802297414BB&Referrer=https%3A%2F%2Ft.co%2FStbzXKKD4e

TJ, are you from California or Canada, where I am (west coast)?

Cheers,
Doug

Hey Doug,

Born and raised in California. Heading to Canada some day. Just haven't made my way up, but it will happen after flu season.

Cheers,
TJ

Go to the ER. Cannot take chances with breathing..

Hi TJ, love to visit California--have had many great trips in/around San Fran and wine country. Many of the places we have visited have been hit hard by fires the last couple of years, sadly, but looking forward to a return trip sometime down the road.

If you are coming to the Vancouver area in BC you will have to hit me up. I am hoping to find some other MG folks in the area where I live (given the population there must be some).

I am going to try to attend the conference--thank you for posting about that.

Cheers,
Doug

Thanks Doug! I hope you were able to check it out. If I get out that way, I will let you know. Cheers buddy!

TJ

To those of you who saw the conference -- what is your report? I wasn't able to see it. Maybe there will be some videos available of the conference later?

Thanks
Russ

Russ, to be honest, it didn't do much for me, but I have lived with this and consistently improved over the last ten years. Learned a lot over time. Seems much info.is out for those getting started rather than those that have been through it all. While it is great to see new meds and trials, we don't have funding to do as much as we would like to rid the world of MG.

New treatments don't seem any safer or more effective than what we currently have, but when people are refractory, choices become limited. We need a cure.

Can any one please give me any advice,my breathing is not it's best I get out of breath very quickly even if I'm just resting ,if I walk for a short distance I get out of breath I'm not gasping for breath but I know it's not right .

I called my doctors last week but told he can not help as needs to be my neurologist my appointment was cancelled for may 4th but hopefully I will get a phone call near to my appointment date .
My doctors just said if it gets to bad I must go to hospital on a 999 call .

My neurologist told my doctors off for increasing my mentinon to 4 a day from 3 but it seemed to work better
So I'm back to 60mg x3 a day I'm also taking 135mg mebeverine to settle my stomach before I take Melatonin .

So any advice would be a great help .

You must have a fool for a neuro. I needed 6-8 meeting per day to breathe at the worst. Find another one of contact this one a d INSIST on treatment that works. You .must!!!!

My last post got garbled by my "smart phone" trying to spell check and me not wearing my reading glasses.
Littlechef: If 4 mestinon pills were better than 3, and you have so much difficulty with breathing your situation is like many of us had early on. I took 6-8 Mestinon per day to be able to breath and function before immune suppression kicked in (prednisone).
My neuro, who was an expert in MG at Mayo Clinic, Rochester, MN -- top notch place-- told me to take up to 8 pills (60mg) per day "as needed." And some days I took one every 3 hours and others less. When my first neuro said three per day, I ended up in the hospital unable to breath and there they put me on double that much and I got out again without machines. My first neuro admitted he didn't know about MG and he passed me on to my second one who did know.
You really have to take this on yourself to get adequate treatment. If you have MG, have trouble breathing, you are headed for disaster soon. Many of us try different doctors until we find one who actually knows what he/she is doing.
If it were me, I would try a day with a Mestinon every 4 hours and see what that did--and if it helps tell your MD. And get yourself into immune suppression treatment now. MG progresses and without treatment, something like 40% of untreated people died in the first 2 years before drugs like prednisone came along.
It is distressing to see you having the breathing problems and not improving and being ignored by your doctor. You are the only person who can change this - and it means demanding treatment that works.
I worked in medical research most of my career, working for doctors, and what I have found is being a patient patient is not a successful strategy.

Russ