[southblues]

My doctor has talked about sending me to Emory Clinic. Have any of you had experiences with Emory? Good, bad?

[limpy]

If you go there testing negative for mg, you are very likely to be referred to a psychiatrist and labeled with a conversion disorder. This is what happened to me. Of course, I was in the hospital there and haven't been to the clinic.
I had a horrendous experience there in their hospital and they actually put my life and my vision at risk by withholding my mestinon. When I was clearly unable to swallow, they removed my nasal tube and pretty much abandoned me to my own devices because they had concluded I was imagining my symptoms.

The reason why I tested negative for mg, was because I have LEMS instead, which to my knowledge, they never even bothered to test me for since they already had their diagnosis wrapped up.

[southblues]

Thanks for sharing!

[sheri0565]

I would rave and rave about Emory. Love them! But I hear alot that go the other way too. On the southside of Atlanta we are locked in by Piedmont. And they are terrible! Anyway, we go the the clinic regularly on Clifton Road but not for me, for a Rheumatologist for my Mom. And the spine and back clinic way up on the north side. I have never had a billing problem with Emory.
And because we live far, they never try and make mutiple appointments. They schedule whatever we need while we are there. They are real good about that.

But as for my MG, I saw Dr David Williams earlier this month and their office
is in the medical building at Emory downtown. I really liked him. ANd it sure was nice to have a Dr. so well versed in MG!!

[southblues]

Sheri, If you don't mind me asking, are you seronegative or seropositive?

[Southern Bell]

Growing up in Atlanta I always thought that Emory was the best hospital, no longer. I'll try to relay my experience as short as I can since I spent 2 1/2 months in the hospital/rehab facilities. I went to Emory because it is close to my home.

1) Being a teaching hospital every doctors visit along came several interns/students to look over his shoulder. Felt like I was on display at a carnival.

2) They discovered very large thymoma - had successful thymectomy. Great surgeon. After about a week or so they wanted to start me on radiation treatment. When my husband asked what the pathology report said they indicated that they assumed that it was cancerous because of the size. After reading the pathology report, turns out it was not cancerous.

3) Neuro wanted to send me to rehab before the surgeon thought I should go. After a few days in rehab the symptoms of Stiff Person Syndrome started. Neuro didn't know what was happening, the PT doctor diagnosed this.

4) After an act of congress I was transferred back to the hospital where they started mestinon treatment. Thank God my husband stayed with me during that night because he had researched mestinon and knew that they were giving it to me too fast. Some time during the early morning hours I couldn't breath and my lips were turning blue. My lungs were drowning in saliva. Ended up in CCICU being intubated and filled with so many drugs there were seven IV poles by my bed (no lie). I also almost had congestive heart failure and they didn't know if I would survive. Obviously I did.

5) Then they wanted to insert a feeding tube in my stomach because I wasn't eating. Found out a couple of days later that they had pierced my colon and I had emergency colon repair surgery.

6) At one point while still in the hospital, I called the nurses station around 5:00 AM for help to go to the bedside toilet. Assistant and nurse came in, nurse stayed at the door, and assistant helped me. They both left and told me to press the call button on the side of the bed and they would return. Well the button didn't work and it was obvious that no one was going to return. When I finally heard someone in the hall outside my room I started yelling for help.

7) After release from hospital, neuro wanted me to have plasma exchange. After the second treatment, the nurse was removing one of the needles and my blood shot up into her eye. Of course she was not wearing eye protection. On my next visit she wanted my approval to have my blood tested for hepititus C and HIV at the hospital's cost to make sure she wasn't infected.

8) On my last visit to the neuro once out of hospital (went every three months) he coldly told me that there was nothing more that he could do for me and that he couldn't cure me. Boy what a slap in the face.

I am now with a neuro at Piedmont Hospital where I should have gone from the beginning and I am so pleased. I have heard from several people that they would never go to Emory.

Just wanted to give you some of the "highlights" of my experience. Hope you have a better one.

Southern Bell

[southblues]

Wow. How did they make a hole in your colon? That took talent if they were operating on your thymus. Or did they do it with the feeding tube? That also took talent. Geez.

Do you mind sharing the name of the Piedmont doctor?

[Southern Bell]

The Emory doctor pierced my colon while inserting the feeding tube. We had a very long conversation with the head of that department and she said they rarely have something like that happen, lucky me.

My Piedmont neuro is Douglas Stuart. His specialty is MS which is somewhat like MG as far as symptoms so he understands what I'm going through and he's more knowledgeable about the medicines that I should be taking. The first thing he did was adjust my meds on the first visit. He also checks my blood at every visit and I also have it checked every six months with my internist. The Emory doctor never checked my blood, he told me he wanted my internist to keep track of that.

Southern Bell

[sheri0565]

Originally Posted by southblues

Sheri, If you don't mind me asking, are you seronegative or seropositive?

Celeste, I dont mind at all. But I dont know what the seronegative/positive is. My diagnosis came from the anitbody blood test and my score was 194.
As my neuro said, 'thats a slam dunk!'.

[southblues]

So you are seropositive. My antibody test came back negative, yet I still have symptoms of MG. It makes some people want to think I am crazy rather than having the MG. I wish that I were, because I think I could get over being crazy. I just can't figure out how crazy makes my eyelids go whacko....