Thanks for sharing Anna. I’m sorry about your diagnosis as well. That must be so hard with kids!

I have a few questions for you or anybody else who can answer them. You mentioned IVIG treatment. One of the things I’ve wondered about and have on my list of questions for the neuro, is how often they can do IVIG. Do they only do it if you are in crisis mode, or in my case, before a surgery? I’ve tried to research this, and I seem to find different answers which just confuse me more. (Not to mention I can only stay on the computer for so long before I get nauseous because of my eyes, ugh!) I mean do they ever do infusions as a standard treatment every few months or so to re-energize you?

Also, you mentioned an MG clinic, where is that and what do they do there?

You and Annie have definitely convinced me to ask my doctor about taking the pyridostigmine more often but maybe in smaller doses. He hasn’t mentioned any other medications to try yet, but I’m sure when I see him Thursday and he sees how I’m doing with current meds and dosages I’ll find out more.

Thank you again!
Kristi

I have set some “goals” for my husband and I to look forward to in up the upcoming coming months. First, we usually spend the winter in Florida. In fact, we would already be there if this hadn’t happened. My goal is to go after the first of the year. My neurologist already said I could get a neuro there, and maybe they could work together. I’ve planned other simple things like a concert in April, and big things like a cruise next summer. Of course everything is refundable. I’m happy you are able to do your photography again. (The photo is beautiful)

Kristi, IVIG all depends upon the doctor (and what insurance you have). There's a lot of paperwork to be filled out for IVIG. Some patients can get IVIG on a regular basis, some even at home. So there's really not a yes or not answer to that one!

There are MDA clinics around the country, which you can find on the MDA site. One of those doctors (in Florida), who is an MDA director, is Dr. Allan Weiss in St. Petersburg. He is an awesome doctor. There are more, but I don't know them like I do him. They often have MDA days, where an appt. is free.

If you can become stabilized, then taking trips should be okay (with precautions). If you vacation where the weather is hot, then you should stay out of the heat as much as possible. Heat can make MG exponentially worse, and quickly. Just in case an MG patient becomes worse on a vacation, you should know ahead of time where the emergency centers are (if there are any). Scheduling naps in the day will help allow you to do what you want.

But know that this disease can surprise you, even while on meds. A person can do something on one day, and then become worse in the next two days. You have to give yourself time to know what your normal is.

If you can buy one, an oximeter can be a useful tool to know how your breathing is doing. I know what my normal is, and when that becomes too low, I can either rest more or see my pulmonologist to assess breathing more. Since everyone's (people without MG) breathing becomes weaker at night, an MG patient's breathing can be even weaker. Some patients have sleep apnea. An overnight oximetry or a sleep test can help to determine what is going on at night. I say all of that because one's O2 can go lower in a plane. Breathing can be more difficult. Hypoxemia is a heart and brain risk (don't freak!). That's why they monitor the heart during an MG crisis.

Thanks for posting, Anna. That's a beautiful piece of art! I'm a designer (among other things), and really appreciate how hard it is to produce any work. Also, thanks for the info for Kristi.

Here is some other general info about drugs. Cellcept is kind of like taking water for many people. Imuran works better for most, but the neuro needs to run the TPMT test before starting that drug.

TPMT testing before azathioprine therapy? - PubMed - NCBI
Thiopurine Methyltransferase, RBC

Rituxan is a more potent drug, usually used for MG patients who have tried other treatments without a good enough response. That drug has been working for patients, but no treatment is without risk.

I hope your neuro knows about all of the different treatments. IVIG is obviously a preferred treatment, due to no immunosuppression. But you have to think about the damage to veins in the long run. Sorry, kind of scary and gross, but a reality.

I hope others will share their experiences with you. There are some Facebook groups for MGers, but I'm not on Facebook, so I can't direct you to them. Our site has become very quiet of late.

Only you can decide what is best for you and your life! These are big decisions. I'm sure you will know what you want. You sound very intelligent and determined.

I would like to give one caution. Don't let MG fool you. A person with MG can become so weak so slowly that s/he can think nothing of how they are doing. When I had my crisis in 2005, I couldn't squeeze the urgent care doctor's hands. I thought I was squeezing them really hard! It's always best to have some measures of how you are doing, whether that is ptosis becoming worse, O2 going lower, not being able to hold your arms out in front of you for long, or anything else. I say that because once someone is on a treatment, they can tend to think they are "normal" again and go back to pushing the physical envelope.

Have a great appointment!!!

Annie

Annie,
Thanks again for such great advice! I will check out some of these websites and the MDA clinics. Unfortunately, we are not very close to St. Pete, but will check it out anyway.
Kristi

Dr. Weiss might be able to recommend someone. Mayo is up in Jackson. Maybe do another post asking if others know of an expert neuro in the area you will be in.

Annie

Hi!
I’ve had a few updates since my last post.

I went for a follow up with my Neurologist here in Kansas City December 18th. He didn’t like what he saw. He thought I’d be stronger than I was since my last appointment and the thymectomy. He admitted me to the hospital for Plasmapheresis treatments. He said he may be going to an extreme, but he wanted me to gain strength before the holidays and trying to get to Florida. I was happy he took the more aggressive approach. I had 5 treatments and was released on the 6th day. My first day home I felt better than I had in months! I woke up the 2nd day, however, really bad. I missed all Christmas activities. But since then I’ve been better than before the treatments, just not as good as the first day. I’m just on that daily roller coaster we MG patients live on!

Annie, I wanted you to know I have an appointment with Dr. Weiss January 8th. I’m anxious to see what he says!

Happy New Year!

Are you back on Mestinon? I hope so!

If you don't have an oximeter, that might be a good thing to have. You can then know your normal and what isn't. Just don't panic if you have one on the plane with you! O2 tanks in an airplane.

I'm glad that your doc finally wised up, and got you treatment you need.

I'm sure that Dr. Weiss will help you with whatever you need. He has years of experience with MG, and treating it. He is an amazing doctor and human being. Just make sure that you ask as many questions as you need to. He might be able to refer you to a neuro closer to where you will be in FL.

Be careful in that Florida heat. Yeah, I know, it's winter. But you really have to stay cool. And please nap after any activity. Don't overdo. To me, your MG doesn't sound stable.

Please let us know how you are doing! Trust your instincts. I hope you have a good time.


Annie

Thanks! Yes, I have been back on pyridastigmine for a while. I was only off of it for 3 days.

I am glad to here you are doing better!
Who is your Neurologist in Kansas City?
Mine is Dr Pasnoor!
I go back in March for my follow up appointment!
Happy New Year 2019 hope it’s a better year👏
Alton

I go to Dr. Kelley with Shawnee Mission.

Hope you are getting better enjoy Florida
Keep us updated !
Safe travels 🏖
Alton