Hey guys,

I've been feeling so crappy the last few weeks...I started plasmapheresis again on Monday...I started to notice I could talk for longer...Then after my treatment yesterday, I had no tongue paralysis AT ALL! I'm so happy right now...I swear, when the body parts get that weak, I go into panic mode...

Something else that was pretty cool happened...I met another MG patient...She was having an exchange as well...She mainly has limb weakness, no more bulbar/ocular weakness...She got MG 2-years ago when pregnant...Anywho, we started talking...She has the same neuro. as me and was talking about seeing Dr. Nicolle in London...She said that she's heard great things about him, as have I from this site...She also mentioned that she ordered a book from the internet that was edited by him and written by an MG patient called, 'You, me and Myasthenia Gravis.' I was thinking that I should go ahead and order that book as well as it's so hard to find anything about MG anywhere other than the internet...

So after the exchange, I go to visit my sister and she tells me she just got a book that she ordered for me...IT was the book! I was so excited...So many funny coincidences...

Anyway, it's a terrific book...It talks about autoimmune MG, LEMS and congenital...It's very reader-friendly, easy to understand...Great book!

Nicky

Nicky, That is fantastic! It IS really scary to have increased weakness in any area of the body. The tongue is such a weird weakness. It feels pretty darn awful and strange. I don't talk/socialize too much anymore or mine would probably be bad too.

Isn't life funny? I'm glad you got that book. It's sounds very good.

I'm glad you have a doctor who will take good care of you. Isn't that such a relief? Wish I had that situation.

Now just because you feel like Superwoman, don't go and overdo it!!

Annie

Hey Annie,

Thanks, Annie...I'll try not to, even though it's a bit tempting (to overdue it, I mean)...lol

The book's great...It's like having a little Annie that you can read at any time-seriously! lol....Many of the things in the book are the same things that you say...It talks about heat, caffeine, all the medications to avoid...Also gives patient accounts...and the best part about it, is that it's for an MG patient, not another doctor...

The doctor who edited it seems to be fantastic...My doc. is pretty good, too...She makes sure MG patients get IViG/plasmapheresis...The treatments don't seem to be limited to people who are about to go into crisis, but people who are disabled by persistent symptoms, whether it be ptosis, limb weakness, bulbar, etc., so that's really good...

Has your doc. ever recommended IViG/plasma-exchange for you? If so, how did you do on it?

I know what you mean about the socializing...I'm still not socializing too much either just because I'm afraid I will run out of gas...lol...I'm going to wait 'til the exchanges are all done, then I might go out somewhere and do something a bit fun--hopefully, the old helium balloon will stay high up in the sky and not creeping it up on my shoulder in wait

Nicky

Nicky,
So glad to hear that you are feeling better with the plasma exchange. I have never had it done before but I have had the IVIG and it worked wonders. Take care ~ Melanie

Hi Nicky,

so glad things are better. and glad you have a thoughtful sister. I have one also, they are great to have!!!
take care
Kate

Thanks, Kate...My sis. and my aunt are my saving grace...I'm glad that you have a great support in your sis. too!

Nicky

Thanks so much, Melanie...I'm so happy that it's working...It's such a relief when something works.

Nicky

Hi Nicky,
yes my sister(older) is my best friend, and has a great sense of humour when it comes to my mg, she also hates seeing me how I am.
I'm lucky to to have an Aunty(Mums twin) she lives 2 doors down from me, and we often get together for a cuppa and a talk. I really do appreciate how wonderful all my family are.

How are you doing at the moment, I hope you're having an ok day
Kate

Hey hon! Are you still feeling better? Sounds like your plasma exchange is like my IV IG - great stuff! LOL!

Just got home yesterday from the hospital - YAY! Had my port put in and am now waiting on my shunt......that way I can be "accessed" for either one with very little fuss or muss!

Can't wait to hear from you!
LOve,
ERin