[Scots Kat]

Hello everyone!

Hope everyone is feeling strong. I wanted to post a little bit about my weekend. Yesterday my husband and I drove to Glasgow for the MGA conference. I've never "met" anyone with MG (although I feel like I know loads of you through your posts). Interestingly the majority of the people there were, ummmm (how to put this delicately) ... of the older persuasion. Since I knew a lot of women were diagnosed in their mid 20s I thought there would be a lot of young women but there were only 3 of us (each dragging along our husbands/partners). Everyone was really nice though.

There were two speakers, Dr Maria Farrugia and Dr Angela Vincent. They were both good. They spoke about the way MG works and the treatments available. They were interesting, but I already knew the majority of what they said (and I'm pretty sure the majority of the people there - moatly people with MG - did too). They showed a lot of the same type of diagrams that I think most of us were presented with when diagnosed ( you know, "this is the nerve, this is the muscle, thisis the gap between them, etc etc). I know Dr Maria Farrugia is doing research right now contrasting thymectomies and medical treatment and Dr Vincent works at Oxford which is a huge research facility so it would have been neat to hear some "new stuff".

The lunch was excellent - a huge hot and cold buffet. Then there were 4 sessions to choose from. I did an aromatherapy session and a Q and A with Dr Farrugia. The other sessions were about benefits (I'm not able to claim any as an immigrant) and a mediated chat session to get to know what works for others. overall a very interesting day and there was a big turn out (easily 150 people from all over Scotland).

The head of the Myasthenia Gravis Association, Alasdair Nimmo spoke about the work the MGA is doing currently as well. That was really interesting and he distributed a fantastic DVD the association had made that explains MG and shows real patients suffering (and they look "normal" which is nice). It showed the huge age range as well (I was in tears when there was a little boy trying to climb upstairs - i could just FEEL the frustration). I'm thinking I might try to host a fundraiser to support the MGA in my community but it'll take some work so maybe I'll wait until after the summer (school is a bit hectic at the minute).

It was a really great day and I look forward to going to more MGA events. I hope I haven't rambled on tooo much. I thought some of you might want to hear about what is going on in Scotand.
Take care,
Kathy

[redtail]

Hi Kathy,

wow, you lucky thing, sounds like it was great.

[ras1256]

Kathy,
That's so neat that they held that and you were able to go! I agree, too bad they didn't have anything really new for you. Frankly I wonder how many here have seen the charts without looking them up themselves. The docs seem to give the dx and send you on your way with scripts and a schedule of test without much explanation of the disease or how it works.

It's wonderful that you want to organize a fundraiser - seeing children with a disease is a BIG motivator!

Thanks for the post!

[korbi_doc]

Hey Kathy, you were certainly lucky to be able to attend that mtg...I would have loved to hear the experts talk 'bout this madness....BTW, I'm one of those of the "older persuasion", lol, but I bet if I had known more or read more of the "extreme fatigue" condition, would've been dxd a lot younger...hindsight is 20:20....can look back now & see that I've been dealing with this for sev'l decades, but just worked harder & mucked along making excuses 'til it hit with both barrels & put me down...even then it took 2 yrs to get a dx & I was so lucky that my breathing (exertional dypsnea) problem didn't put me in ICU with a crisis...one crazy doc actually just pinned me with total heart failure..said "what did I expect, afterall, course I'd have trouble breathing"...wasn't my heart at all.. .when I read 'bout all you young guys'ngals with such symptoms, realize mine was mild enough for me to keep working for yrs 'til I retired & moved to Tn..(always felt something was really wrong with me tho, cuz I couldn't keep up)....then the proverbial "sh$$ hit the fan....now I can't do much of anything physical & it's killing me....&, now I find out that my OLDER sister is experiencing the same symptoms....wonder how many of my family had this....

Maybe the reason you don't see more young ppl yet is cuz of the difficulty we all meet trying to get a dx of this dreadful disease...way too many doctors pat us on the head & push pills, like my rheumatologist who just said fibromyalgis, take Lyrica, what a jerk.....at least now it is recognized & they are trying to get more meds to help....I hate to see the reports of young toddlers & teens starting out with this...sorry for the long post/rant..lol...

Dottie

[leaningin]

IS there any way to get a copy of the DVD that was shown at the conference?

Originally Posted by Scots Kat

Hello everyone!

Hope everyone is feeling strong. I wanted to post a little bit about my weekend. Yesterday my husband and I drove to Glasgow for the MGA conference. I've never "met" anyone with MG (although I feel like I know loads of you through your posts). Interestingly the majority of the people there were, ummmm (how to put this delicately) ... of the older persuasion. Since I knew a lot of women were diagnosed in their mid 20s I thought there would be a lot of young women but there were only 3 of us (each dragging along our husbands/partners). Everyone was really nice though.

There were two speakers, Dr Maria Farrugia and Dr Angela Vincent. They were both good. They spoke about the way MG works and the treatments available. They were interesting, but I already knew the majority of what they said (and I'm pretty sure the majority of the people there - moatly people with MG - did too). They showed a lot of the same type of diagrams that I think most of us were presented with when diagnosed ( you know, "this is the nerve, this is the muscle, thisis the gap between them, etc etc). I know Dr Maria Farrugia is doing research right now contrasting thymectomies and medical treatment and Dr Vincent works at Oxford which is a huge research facility so it would have been neat to hear some "new stuff".

The lunch was excellent - a huge hot and cold buffet. Then there were 4 sessions to choose from. I did an aromatherapy session and a Q and A with Dr Farrugia. The other sessions were about benefits (I'm not able to claim any as an immigrant) and a mediated chat session to get to know what works for others. overall a very interesting day and there was a big turn out (easily 150 people from all over Scotland).

The head of the Myasthenia Gravis Association, Alasdair Nimmo spoke about the work the MGA is doing currently as well. That was really interesting and he distributed a fantastic DVD the association had made that explains MG and shows real patients suffering (and they look "normal" which is nice). It showed the huge age range as well (I was in tears when there was a little boy trying to climb upstairs - i could just FEEL the frustration). I'm thinking I might try to host a fundraiser to support the MGA in my community but it'll take some work so maybe I'll wait until after the summer (school is a bit hectic at the minute).

It was a really great day and I look forward to going to more MGA events. I hope I haven't rambled on tooo much. I thought some of you might want to hear about what is going on in Scotand.
Take care,
Kathy

[erinhermes]

I find it amazing that over here in the Us there is NOTHING about MG - nothing!

No idea why!

How are you doing? Are you still swimming? How are all of your "kids"?

Do you have a copy of the DVD from the conference? I'd love to see it!

Big hugs!
Erin

Originally Posted by Scots Kat

Hello everyone!

Hope everyone is feeling strong. I wanted to post a little bit about my weekend. Yesterday my husband and I drove to Glasgow for the MGA conference. I've never "met" anyone with MG (although I feel like I know loads of you through your posts). Interestingly the majority of the people there were, ummmm (how to put this delicately) ... of the older persuasion. Since I knew a lot of women were diagnosed in their mid 20s I thought there would be a lot of young women but there were only 3 of us (each dragging along our husbands/partners). Everyone was really nice though.

There were two speakers, Dr Maria Farrugia and Dr Angela Vincent. They were both good. They spoke about the way MG works and the treatments available. They were interesting, but I already knew the majority of what they said (and I'm pretty sure the majority of the people there - moatly people with MG - did too). They showed a lot of the same type of diagrams that I think most of us were presented with when diagnosed ( you know, "this is the nerve, this is the muscle, thisis the gap between them, etc etc). I know Dr Maria Farrugia is doing research right now contrasting thymectomies and medical treatment and Dr Vincent works at Oxford which is a huge research facility so it would have been neat to hear some "new stuff".

The lunch was excellent - a huge hot and cold buffet. Then there were 4 sessions to choose from. I did an aromatherapy session and a Q and A with Dr Farrugia. The other sessions were about benefits (I'm not able to claim any as an immigrant) and a mediated chat session to get to know what works for others. overall a very interesting day and there was a big turn out (easily 150 people from all over Scotland).

The head of the Myasthenia Gravis Association, Alasdair Nimmo spoke about the work the MGA is doing currently as well. That was really interesting and he distributed a fantastic DVD the association had made that explains MG and shows real patients suffering (and they look "normal" which is nice). It showed the huge age range as well (I was in tears when there was a little boy trying to climb upstairs - i could just FEEL the frustration). I'm thinking I might try to host a fundraiser to support the MGA in my community but it'll take some work so maybe I'll wait until after the summer (school is a bit hectic at the minute).

It was a really great day and I look forward to going to more MGA events. I hope I haven't rambled on tooo much. I thought some of you might want to hear about what is going on in Scotand.
Take care,
Kathy

[Scots Kat]

Hi everyone!

I just got home from a school trip so I apologise if I'm not making any sense. I have a copy of the DVD myself but the MGA had loads made. I would be willing to contact them and ask for some copies to send out to a few people. I'll try to get in touch with them tomorrow or monday and see what they say.

I hope I didn't offend anyone about my "older persusasion" comment! I didn't mean any harm - it just surprised me! I was speaking to one woman whose daughter has MG and is in her 20s but she sends her mom because she is too scared to go to the conference. I thought that was sad - I think it would be helpful to meet people who are functioning with the condition. Although, I guess on the same note it was hard to see people way worse off than me - I wondered, gosh, will I get worse until I'm like them? Or why are they so much worse than me?

Anyways, sorry - I'm rambling! I'll be in touch with the MGA and post later!!