Hello all!

Just got off the phone with my neuro's office and he is setting up an appt for the MAYO clinic! Yippee! I am soooooo excited! This is the best news I've heard in a while!

I'm also having ANOTHER doppler done (I had 3 done in the hospital last time I was there), as well as gallons of lab work....my PCP and neuro are requesting every test known! Thank God for my port!

AS most of you know, I've been having lots of pain and can no longer walk on my left leg and was dx'ed with piriformis but I had another "incident" last night where I dropped a pill on the ground - tried to get it up and rolled on my left side - it was AWFUL! I was in so much pain I couldn't move and was screaming my head off! It was really scary!

My mom has also done home health care work in the past and we are now pushing to have her help me out. She has been GREAT! This was she doesn't have to get up @ 4:00 and can drive me to my appt's since I can no longer drive! Plus, she will be able to get insurance and social security)

My PCP is sending someone out to help with my PT - again due to the walking/driving thing and I am sooooo excited!

My pred was pushed back up to 40 mgs for the time being -
I've just been too weak to get anything done!

I may be getting a Hover Round soon......I am so ready for one!

You know, I have been truly blessed to have such AMAZING doctors! They have really been taking care of me!

MIke and I will be going to the Mayo in Phoenix and renting an aparmen there! It sounds nuts, but it will be like a 2nd honeymoon!

How many of yo have gone to the Mayo? What did you think of it? Do you use a wheelchair/Hover Round for your MG? What do you think about it?
If you did go to the Mayo, how long were you there? A month? Longer?

This is an answer to prayer! Fnially some ANSWERS!

I hope this post finds all of yo string anf happy!

Love,
Erin

Hey Erin, this is one of the best things which could have happened to you, you'll be in the right place to get everything sorted out!
When is that appointment scheduled for?
In the meantime, rest and spare yourself and above all, keep faith in the future...
Maurice.

Erin, Bring your Purell and your patience.

If you've never had a "Mayo experience" before, be prepared for lots of waiting around. And a lot of time between testing. Unless they've gotten better at organizing a patient's experience there, it can be quite frustrating. You may even want to tell them ahead of time that you only have a certain amount of time to be there and can't fly back again. Ask for what you need ahead of time!!!

I would highly suggest getting a hotel that is right next to the clinic. At the Rochester Mayo, most hotels have shuttles that go back and forth between the clinic. It may be easier for you to be closer. And having a hotel that has a fridge and microwave, for example, may make your stay less expensive.

Expect to see one main doctor, probably a neurologist, plus other specialists. The problem with a neurologist scheduling you there is that they will see your situation with only their specialty eyes. They may miss something. I'm actually not a fan of going to a place like that if you have a teaching university or something like that near your home. It's better for an internist to coordinate care. Just my experience. It's less costly, it can get done quicker and they have less of a chance of missing something.

Mayo is not full of Gods (not a religious reference but a doctoring one). They often miss things too. I hope your experience there is a good one and they can figure out what is going on.

Annie

Erin,

I'm so happy for you. You seem full of hope and that's so great!!!

Not at all in any way to rain on your parade but I just wanted to mention a couple of things. First, Mayo. I think you'll be well treated at Mayo because you already have a diagnosis of mg. I just wanted to let you know that you have to be careful to see someone who really, truly specializes in your medical problems. My experience with Mayo was that they hate to diagnosis. The very first day I got there they told me to go home. I was devasted! I ended up begging them for a week to look into various things.

The other thing was that, at that point, I was pretty convinced that I had mg and I had to beg for a week for them to give me the tests. I thought they had agreed to send me for a sfemg but when I got there it was just an emg and nct. Afterward, I brought this up with the neurologist who absolutely insisted that sfemg was not the best test for mg. He also absolutely insisted that I was being ridiculous and didn't have mg. They very grudgingly ran the blood tests. The very last day there, feeling extremely upset because I couldn't get any help and so having no hope in the future, I went to see the doctor I had been assigned as a sort of directing md. He also had insisted that I didn't have mg. When I went in to see him he surprised me by saying the neurologists wanted to see me one more time. I asked him, did any of the tests come back positive for anything? He said no. That afternoon I went to see the neurologist and he casually, halfway through the appointment, mentioned that I had tested positive for the AchR antibodies - twice. I literally jumped up out of my chair and ran over to his computer to see the results. I was practically crying because after 7 years this was the first positive result that I had ever gotten. But he told me that since the titer was low, albeit positive, that I didn't have mg. I was sure that was wrong because I had done so much research. When I went home I verified with the mgf that titer is not correlated with symptoms but in the meantime I thought I was going to go crazy!

Anyway, it was a devastating experience and one that cost me $6000 which I could ill afford to spend. Nonetheless, Mayo is supposed to have one of the best mg facilities (at least in Rochester) in the country. I think I just ended up with a neurologist who wasn't familiar with the disease, but in usual neurologist fashion was too confident in his own knowledge to take the time to verify the facts. So my point is, be careful. Insist on seeing the mg specialists and the specialists for whatever else you may be concerned about. And don't let the Mayo name intimidate you or give you a sense of enormous confidence in them. They're just like all other doctors in that you need to listen, of course, but then check, check, check, research and check what they tell you.

Okay, now the scooter. :^) I once rented a scooter at the zoo to take my kids and some neighborhood kids on a zoo outing. I couldn't have done it otherwise and everyone was so excited for the trip! Anyway, while I was there I was okay but as I was driving home I felt myself crash really badly. I then had one of the worst mg episodes ever. I lay in bed for three days sick as a dog. I even had to tell my kids not to come into the same room with me because I felt like just talking would send me over the edge. I think it was because I had to move my arms continuously to control the steering. I've read on another site of other mg people who also had trouble with scooters for the same reason. Too bad because scooters seem like a fantastic way to get around!! I have been dreaming about getting a power chair instead. I've even thought about selling some jewelry to get one. It's just a suggestion but I wonder if you could rent or borrow a scooter and then a power chair from your local provider to try out before you buy one or your insurance pays for it. There are so many different kinds and you want to be as comfy as possible.

Anyway, I hope I haven't put a damper on your hopeful, cheerful self. I think it's great that you're getting more help and other doctors will be looking over your issues. And I'm so glad you're going to take your hubby along and have a second honeymoon! That's so awesome!!!!

By the way, I have to say this about the Mayo: it's the most amazing, best run, best managed organization I have ever seen. It is truly a stunning accomplishment of mankind. If you need a test done, bam, you're scheduled with 24 hours, often within 1/2 hour. Everything is immediately reported to your doctor and you will be quickly scheduled to see him or her to discuss results and the next step. One doc will call another for consultation and get called back immediately. You will be given a continuously updated schedule with complete instructions and every single person in the entire organization will happily answer any questions, correctly, about where to go or what to do. If you have any other questions they will immediately pick up the phone and find out the answer.

I hope they can figure this all out!!!! I think they will, I do!

Ally

Oh, Erin, I am so happy for you. This is just the break you needed. I just know they will be able to help you so you can start feeling good again. Do you know when you are leaving? It's so great your husband will be with you. As you know that always helps. Just hang in there sweetie!

Big Hugs,
Pat

Hi guys!

Thank you so much for all he info! It was really helpful! Mike and I plan on renting an apartment for a month and doing all of our own cooking and cleaning - trying to save some money!

I am going to try and figure out what on earth is going on with my back and mobility issues.

I seem to have "stumped"all of the docs here, so Dr. I wants me to have a very thorough workup.

I see a new hip guy on Wednesday. Maybe he'll have some info for me.

I must admit I am THRILLED at the prospect of going - maybe this will clear up why I'm in pain all of the time. Maybe someone will be able to explain this darn swelling.


All I KNOW is that I'm going to fight like heck to regain my life.

Going to life being unable to walk unaided really sucks! I look like a penguin right now!

I DO know that Dr. I has my best interest @ heart! He has actually grabbed a (male) nurse and dragged him in to my room b/c he was late with my meds........what a guy!

I'm also having tons of MRI's and CT scans on Thursday - per Dr. I and Dr. Pinkston. Dr. Pinkston is testing for:
Blood work:
CMP
CBC
TSH
Thyroid AB
Free T4
25 HVD
Hemoglobin
Ferritin

MRI's
L-spine
Bilateral hip

Bone Density

Radiography
Lumbar - 3 views
Bilateral hip
Mammogram

Dr. I is checking for the brain, back and ankles

We'll see how it goes!

I DO see the light @ the end of the tunnel for the first time in a long time!

How are all of you feeling?

Love,
Erin

and you are always in my prayers ,
Patrick

Erin,
As always, you are in my prayers. Hope you get some answers to your many situations. God Bless You!
Hugs,
Simon

Good luck, Erin!!

When do you and Mike go to Mayo?

Sue

Hey Erin,

I'm so happy to hear that you're on your way to Mayo...From what I've read, they'll get to the bottom of this all.

Good luck, and I hope you start feeling better really soon!



Nicky