NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Hey ya'll! (https://www.neurotalk.org/myasthenia-gravis/111991-hey-yall.html)

Hello everyone! :hug:

Been gone for a while now due to illness/stress and will prolly be off for a while......needless to say it has been a crazy month or so.....

I love my neuro, but have been going downhill for a while so I went to see a new one who told me I would prolly be too "complicated" a case for her and she wants to send me to a neuro's neuro here in SA.

Bad scare with left breast - biopsy came out NEGATIVE but they kept the clamp in for future reference and I need to go in every 6 months from here on out to get it checked out:eek:

Edema still driving me CRAZY! I'm gaining about 7-14 lbs @ this point and have had doppler tests, lab work, etc to rule out the problem. Saw my internist who swore up and down it was heart related so I went in for a test on my heart - thank God it turned out OK!:D

3 fractures all told at this point - spine, hip and ankle, though the pain has FINALLY been manageable:D

I'm going in for more IV IG next week - FINALLY! I have been BEGGING for IV IG, but Dr. I was concerned that it was the cause of my back pain - NO (!) it was the steroids that were making them brittle and weak...........

Finally OFF the cyclosporine! It was awful!:eek:

The IV IG should pep me up and give me energy! Just love the stuff! Plasma exchange is just too hard on me.....

I'm heading to the Mayo on the 25th! Yippee! I've also been told that one of the "top" people for MG is here in Texas - Houston to be exact, so I'm going to head over there when I get back......just want some of my energy back!:D

Had a GREAT xmas! It was so much fun seeing all of the little ones running around! We had it here so I could climb in to bed when I was tired! THe house looked great due to my aunt who came down and helped decorate. IT was wonderful!

How are all of YOU feeling? I've missed you all soooo much!

Love,
ERin:hug:

Erin,
Glad to hear an update on you. Been praying for you my friend. Let me know where and who you are going to in Houston, as that is where I go. Take care and stay in touch.
Big Massive Hugs,
Simon

Erin!!!! Yay!!! So good to hear from you. Sorry to hear you're going through so much. A biopsy is so scary. Waiting for the results is almost the worst part. Ugh. So happy to hear it came back okay.

Sounds like you're getting plenty of attention. That's great. With all of those good minds working on your case I think you'll make great progress in 2010!

:hug:

Ally

good to see you back.

Hey Erin,

I'm glad to see that you're feeling better, and that you're on your way to getting things figured out.

I had a biopsy of a large lump in my left breast too, last Feb.. It turned out to be a fibroadenoma. Is that what yours was?

Take care!
Nicky

sorry to hear about the hard time you were having.

and glad that there seems to be some light at the end of this tunnel.

hope you feel better soon,

alice

Erin,

so good to hear from you girl, been worried, no that should be WORRIED!!!!!

Glad to hear you are getting things sorted, and hope things go well at the Mayo.

take care, no more fractures,
look after youself
kate

So sorry about all the crap you have to go through.

Hope all goes well at the Mayo.

Love
Rach

Hi Erin
its got to be good that your seeing a different Neuro who may have a better way of treating you good luck and wish you well
my Dr is trying to find out why i have edema like you ive had all the heart tests so now just waiting for new ones on my stomach hey and SNOW isnt that nice after all !!!!!!!!!!!!! keep smiling:hug:
alan:)

:hug: ERIN :hug:

So glad you popped in and gave us an update, we have all been worried about you!

I hope you get everything fixed soon, I know that pred messes up our bones in a bad way, that is one reason my Neuro is so against it.

Please keep us updated on everything and know you are in our thoughts.