Neuro appointment
 

I am finally set up for my IV pred., 3 days, home care is coming to my house to do it. I need the break so bad.
I was told today my denervation atrophy is my Myasthenia gravis, I was told at diagnosis I had a very severe case of it, I guess it is a rare progression of it. I told the doctor I didn't know MG caused atrophy all over your body like this, & he was silent, & said he was sorry. My next visit I need to ask a tough question, of when this happens what does this usually lead to.
But am looking forward to some energy, & a few good days from my boost, I hope it lasts forever ! lol.........
Mary:winky:

Mary, My opinion is to get a second opinion. Not that his opinion is wrong but when you are dealing with this kind of specialized "problem," you should get a 2nd opinion. You are not putting your doctor down by doing so. You are respecting the disease state by doing it. And more than one disease can cause that denvervation.

I'm sorry, Mary. If you indeed have MG that badly, then you should be going somewhere like Cleveland Clinic, Washington University in St. Louis, MO or Mayo. Somewhere that has more info on all of this.

What a kick in the head. I'm sorry if you have a progressive kind of MG. Did they say what kind of nerve is degenerating? Did you get a copy of the reports? If not, please do!

I hope you get relief from the IVIG and Pred. At least your doctor is being aggressive and giving you good care.

Annie

Mary,
I am sorry to hear about your denervation atrophy.:( I have never heard of that but I know atrophy is not good. If you feel up to it sometime would you mind sharing with me what you are experiencing with this? I hope the pred helps you feel so much better. Hope this happens soon. Take care.:hug:

ckitty

IM very sorry to hear this mary. I hope you feel great after the IV, sending as much good vibes down to you as possible.

Mary,
My prayer is that you will see much energy and many more good days ahead! Keep the faith and we will believe for good things in your future.
Hugs,
Simon

Hi Mary,

I'm sorry to hear that you have atrophy...Which muscles are mainly affected? Are you MUsk positive?

I am praying that the IV prednisone helps you! I hope that something can wake up those little nerves and get them nourishing those muscles again!

:hugs: Nicky

Annie
I do have my pathology report, & I have been thinking of the MDA clinic we have right in St Pete.
I may wait to see how I come along after the IV pred.
You always give such good advice ! So glad I found a great bunch of buddies !
Mary

Mary, You are very kind. I don't think it's what a person knows about medical stuff but how they "look" at or think about it all. Taking time to really think about what the heck is going on with your body and if you've gotten the best care is a very good idea. ;)

Are you talking about St. Petersburg Neurology Clinic? Dr. Allan Weiss (727-820-7701) in particular? He diagnosed my MG and is probably the best neuro I've ever met. This may be out of his specialty, which is MG, but he is VERY smart. And nice. I trust him.

I just hope you can get the treatment to make you feel better.

Hey Mary,

I am so sorry to hear the bad news. I'm sure the pred will give you a much needed boost. I know you've had to wait so long. Getting a second opinion is a great idea and it's good you don't have to travel far. As always I will keep you in my thoughts & prayers. Take good care of yourself.;)

Big Hugs,
Pat

Annie
Thats the guy ! I figured if I went to him, where I am diagnosed with MG, he would be able to confirm,& treat, or direct me to who I need to see. I have heard wonderful things about him!
Mary

Mary;
I am so sorry to hear of your problem. I too was recommended to see this same doctor by the MG association director in Florida. She is also a patient of his and says he is the best and only 3 "MG Specialists in Florida". The other 2 are at Jacksonville. Good Luck:hug:

Annie
Thank you for the number, I am calling for an app. today !
Nicky
I have atrophy all over, my biopsy was done in the leg, but you can see it in my hands, arms, shoulders, back, face, & feet. I have to work hard at keeping weight on.
Thank you all for your help,
Mary

Mary,

I'm really sorry you are having such difficulties. I hope you get more clarity from the second opinion doc. Perhaps I am ignorant, but I was really surprised (not happily) to hear that MG can lead to muscle atrophy. Please let us know when you get your appointment - from what others have written, this guy sounds like a true MG expert.

Sue

Got my appointment with Dr. Weiss, Sept. 16th !, they are sending my paperwork & release forms for my records. My friend already said she would take me, as it is a 45 min. drive, to much for me these days! Better days are coming I am sure! Happy Day !
Thank you all for your support, & a little nudge ! lol........
Mary

Mary, that's great...I'm so happy for you!:D I just know they are going to be able to help you. That was fast too so you don't have long to wait. Take care.;)

Big Hugs,
Pat

That's great Mary. The reason I have not gone is that it will be about 9 or 10 hours drive for me. I would love to have his opinion and advice. Good Luck.

Sharon

Yippee!! This is wonderful news!
Sue

Hi Mary!