Hello all!

Just returned from the Mayo in Minn. - Phoenix would not take my ins. - and it was GREAT!

I was tested from head to toe. I was a guinea pig and loved every minute of it! My neuro looked like Doogie Howser (about 12 yrs old) but was very thorough. He DID say that my neuro did everything he would have done, but my case was one of the most complicated he'd ever seen.

Everyone agreed that at this point the pred is doing more harm than good. My bones are like chalk. My blood pressure is through the roof. I am waaaaay overweight. I was told point blank that they(the roids) are literally killing me @ this point.

They discovered that my ribs and pelvis are broken as well now.

The ortho that I saw wanted to put a pin in my femur but said it was too risky @ this point, so I need to find a great one here in SA.

The Mayo was amazing! I would have one or two appts set up and then they would add 5-10 more but I never had to wait more than 10 min for anything.
They were also very warm and caring.

I saw so many doctors that it started to become a blur, but am so glad that I
was blessed enough to go! Mike and I thought of it as another honeymoon! No kids or dogs!

The pred has also atrophied my shoulders and thighs so I need to start GENTLY working on my arms, but nothing for my legs right now. I was given the dubious honor of "china doll" by the ortho who told me not to go anywhere without my walker for fear of a HUGE break in my femur - right now it is a hairline fracture throughout - and permanent damage. I'm also NOT to carry anything for a while - 6 months to be exact.

The endo said my thyroid is a bit low but nothing to be concerned about. I wore that finger thing to check for sleep apnea - all clear there. 10 vials of blood were drawn - all clear. BAG all good. Neuro said that @ this point my MG seems to be OK but the pred HAS TO GO! No if's, and's or but's!
I don't know what to do about that as I have been told that I am more roid dependent than the average person, but it simply has to be taken care of.

I've also decided to get another neuro. I love the one I have right now, but he really blew me off when I told him how much I hurt. I can't keep waddling around with a broken hip/pelvis and have him tell me to take a tylenol. The Mayo dr thought that was simply crazy and gave me some morphine to combat the pain. It has helped, but with this many broken bones it only takes the edge off - I am thankful for that!

My new neuro called and checked on me and LEFT HER CELL NUMBER! She also had flowers delivered to my hotel room and a gift package for my trip. It was wild! She is a research doctor who works only a few minutes from my home and is able to get IV IG by the boatload - at a greatly reduced cost - so I will be able to go in, have my IV IG therapy and drive home! YIPPEE!

All in all, I HIGHLY recommend the Mayo in Minn! It was flippin cold, but the drs and staff were amazing! They gave me such hope! I've been a bit down recently with all of the pain but am once again seing the light @ the end of the tunnel!

Sorry for the super long post!

I hope this finds all of you strong and HAPPY!

Love,
Erin

Great news Erin.

Sorry you're reacting so badly to the Pred, hopefully your new neuro can find a solution that will work. I'm very glad you had a positive experience with the Mayo clinic even though you have a longer stretch of recovery ahead of you. Follow their instructions and don't be trying to host a family party or anything like that

Erin,
I'm so glad you are finally getting some answers. Your new neuro sounds fantastic. Things can only get better from here on out.

Can I ask how long you have been on Prednisone? Were you ever off it? What dosages(s) were you at for the longest?

I've been on it since last July except for one month at varying dosages. Currently at 5mg (worked down from 40mg in mid December). Highest I was ever on was 80mg but only for 3 days.

I recently had a bone density scan and it was normal for my age -- 57 female.

Erin,

What a relief it must be for you to have found a complete dx at Mayo! And after all this to have your MG under control is nothing short of fantastic!!

Also glad you have a new neuro that you like so much. 2010 is going to be your turn-around year!! And no one desrves it more.

Sue

WOW Erin!

I can't believe all the broken bones, and I too am wondering how long you have been on pred. I know I was only on it a year and it messed me up so I am curious. Thankfully my Dr won't use pred

I hope you continue on a healing path!

Erin,

Are they giving you any treatment for osteoporosis? I heard that there are some new medications that can help replace some of the bone you've lost and prevent further breaks/fractures...

I also can't believe how many breaks you've had...I'm on a fairly high dose too and this is making me really nervous as I'm already one of those people at risk (other than my age)...I feel like I can't get off of this fast enough...

What medication are they going to use to control the MG? Just IViG?

ANyway, I'm glad that things went well, and your neuro. seems to be pretty good so far.

Good luck,
Nicky

Hello Erin,
Glad for you that finally you were in very good hands...
Did you have your eyes tested for glaucoma?
One more question: did you take Calcium and vitamin D supplements or biphosphonates to reduce osteoporosis?
Take care.
Maurice.

Erin,

I'm so happy that you were able to get so much help at the Mayo! As I said in an earlier post to you, my impression of the minn mayo was that it was the best run organization I had ever witnessed. Truly a marvel of human ingenuity and organization.

Did you have a particular doctor that you asked for? Or did you just ask to be seen by an mg specialist? I ask because I'd like to go back there, but the first neuro I had was pretty clueless about mg and blew off my positive antibody test.

I can't believe your neuro sent you flowers!!!!! What an incredible person. I think that says so much. I'm so happy that she'll take care of you and that you can get lots of IVIG treatments. I guess you're going to need it without all the pred. Wouldn't it be great if she could control the disease without the pred and you wouldn't have any of the horrific side effects? I mean on some level it's got to be nice to wave goodbye to the pred just for the weight gain issues alone. Even though I want stronger treatment for mg, everytime I read about the moon face and the weight gain and the weak bones I really have to wonder what I'm trying to get myself into.

Anyway, it's so nice to hear that you've been well taken care off and thoroughly researched. I love to hear that because it goes a little way toward restoring my faith in the medical field. Plus, I'm so happy and relieved that you're being helped.

You've managed to keep your head above the water and keep going even though these last months have been torture. Literally! Good for you, you are a real inspiration to me.


Ally

erin, sometimes you amaze me.
No matter how much you struggle with your own pain and health issues, you still manage to come on here and inspire others.
Big kisses and kudos to you girl.

Hey Erin,

It's so great that you had such a positive experience at the Mayo! I'm so glad to hear they have your pain under some control now. Do you know how long it's going to take to taper off the pred? Your new neuro sounds very nice and thoughtful. I really think this is going to be a great year for you! You have been through hell and back again! Take good care of yourself, we're all pulling for you!

Big Hugs,
Pat