All of the best to you! Will be praying they start you on the right treatment. Barbel

Absolutely, wishing you the best possible outcome.
Larissa

Keep us posted. I hope Mayo comes through for you.

Carly

Good luck. These appointments take a lot of energy but are worth it.

Here's hoping you get some answers. You might want to list your concerns in writing for the both of you, so nothing gets overlooked. Good Luck!

Good luck to you. I hope that you get the answers that you are looking for. I agree with Marina, that listing your topics on paper will keep you organized and helps you guide the visit from one issue to the next more smoothly. List them in order of importance if you can so that if you run out of time nothing that is super important gets left out. Also, give a copy of that list to the medical assistant or nurse when they put you in a room. Ask them to give it to the doctor to review before he steps in the room. Hopefully that will give him a heads up about what to expect when he sits down to talk about things with you.

I am hopeful for you getting some much needed answers tomorrow. Please let us know how it went when you get the chance.

Aloha and hugs
Angie

Good Luck!! I hope you get all the answers and help you need.x

You have a lot of us pulling for you, and we're all starving for info: How'd it go?

I kind of want to cry right now. I was not impressed with Dr. Kennelly at the Mayo Clinic although she is highly recommended by the MG foundation. My fianc and I both attended the appt. I provided a visual example of what I was experiencing visually and some of my other weakness problems. I truly believe because I am young and in pretty good shape that these people are just not convinced my issues are from MG. She basically reverted back to my 08 visit with them because the doctor at that time wasn't sure if my symptoms of swallowing and throat problems were from MG. I also complained of facial tingling, which I still get to this day since 08. She made the comment that even though I have a positive blood test, it doesn't mean my symptoms are from MG and that some people have elevated blood tests for things and don't even have a problem with that particular disease. My vision symptoms to her do not add up because they are apparent in each eye with the other closed. Since my vision problem ISN'T double vision, she doesn't think it's MG. I informed her that my father had a muscle problem in his eye for years that opthomologists overlooked for years until he finally found one that found a weak muscle in his eye and fixed the problem. I asked her if there was anyway for them to test the muscles in my eye, and she basically said a neuro-opthomologist would have to do that. She referred me to one there which they wanted me to come back on 8/22 for a visual field test, which I have already had. I was very upset that she didn't even bother to ask me which testing I have already had and I told her I had seen 3 eye doctors, including a neuro-opthamologist. I went straight to that department and provided my medical records of all of the testing I had already done and informed them I didn't want to waste their time or mine for testing that already had been performed. The doctor there was awesome and pulled me. I explained everything to him, he dialted my eyes, did an OCT test, and tested the pressure in my eyes. He explained the same thing that double vision would be my problem and that I did show signs of refractive errors in my eyes because the blurriness improved with the pinhole exam. According to his exam, I am 20/25 in the exact opposite eye that the other doctor said. My eyes have literally fluctuated between acuity on each exam, all performed later in the day. I got straight to the point and thanked him and said, what do you think is causing this wavy vision that I am experiencing or who should I go see. He said "I'm not sure" and that I should follow up with my regular Neuro here in town. I had a repeat EMG (not single fiber) that they did on my left foot, shin, hip, and forehead. The guy doing the forehard part said it looked normal. So again, the EMG is not supporting an MG diagnosis, only blood work. They did draw some blood to determine which antibodies are specifically elevated since I've only been tested for binding? She is testing for blocking and modulating as well. Everyone, thank you for the positive feedback, I seriously am ready to give up. I feel lost and somewhat hopeless. I would never make up my symptoms and it's frustrating when I have some doctors saying I have evidence of MG, but the Mayo saying they aren't sure. I am finally off of all depression meds and I have been doing well the past several weeks. I really felt deep down that this was mild uneven eye muscle weakness but they don't think so. I've seen a neuro-ENT at Shands and he did a ct scan to check for semicircular canal dehiscence but I'm not even holding my breathe for that. I appreciate the neuro-eye doc giving me his honest response of he didn't know, but how can MY neuro say that the eye problem I am experiencing isn't too unusual for MG and that's what it's from. My only option now, is to set up an appt. with Dr. Weiss in St. Petersburg. I think I am going to send a letter before I make an apt so I am not wasting my time. I may take a break from DS because I don't know if I belong here (not because of you guys) but because if my issues aren't from MG, I shouldn't be asking here. Dang it, I'm really, really, really, sad right now.

Don't worry about whether you belong here or not. Many are here awaiting diagnosis, rediagnosed or questioning it all. Stay. You need us. I understand how it can be very depressing. My situation is why different. All agree I have MG since January of 2012. Before that I was essentially healthy. Now they keep attaching new diagnosis to me: heart problems, cataract to the point I can only do minimal driving, blood clots to the lungs, anemia,etc...it can be depressing. Hand in there. We are on your side. Mary

Thanks, Mary. I just don't understand. I have a positive blood test and started with bulbar symptoms. How the heck is that not MG? The neuro opthomologist didn't say I didn't have mg, but he didn't feel sure that all of my eye problems were from MG. I thought this was a snowflake disease, and I don't understand why subtle eye muscle weakness could be restricted just to a couple of the eye muscles. Whew, I don't know. Have a good night everyone. I've been up since 4am.

So sorry that you are struggling like many of us and the medical profession has let you down. As Mary says,you belong here--more than you know. It is late and I am Eastern Time Zone and will drop you a note in the morning.

Big hugs--it was a "terrible horrible no good very bad day" as Alexander says in the book of that name, but hope for better days, b.

Oh my goodness. I'm so sorry that you had to go through that today. I understand how discouraging that must be but I beg you not to leave DS. I think the important thing is that you believe that you have MG and there is nobody here that would disagree with that. I believe it if you do. I support you and your decision but I'd hate to see you go because I think you still need the support.

If you are willing to travel, I would encourage you to contact Dr. Howard at University of NC in Chapel Hill. He is world renowned for his work and research of MG. That's who my neuro trained under for 2 years and many others here have also seen him. It may be worth your while to contact him (write a letter or contact the office) to get in to see him. There is no one quite like him. Other neuros may be good but Dr. Howard is the best! If your diagnosis and symptoms are in question, he would be the best person for any of us to see. He's been working in the field of MG for many, many years. He has seen it all, so I'm confident that he could help you.

I'm not trying to push you to do something that you don't want to do but you can't give up. Giving up only takes your hope away and it will never confirm your suspicions. Please reconsider.

I am sending hugs your way. We are here for you and wish you the best of luck.

Love and Aloha to you hun.
Angie

Yes, hang in there. This is the best place for your MG questions, IMO. (Don't tell our doctors I just said that :) ) Sometimes I wonder if strange symptoms are from my MG, from just living, or some side effect of a drug I am on. Hopefully someone's experience here will shed some light on what is happening.

I am so very sorry to hear of your disappointing/confusing/inconclusive appointments. My understanding is that being seropositive means you have MG, am I incorrect? Please do stay, give yourself a bit of time to sort things out and plan your next step, and know that we will be with you.