I saw my neuro yesterday. I had 3 ER visits last week, really bad off, and the ER had started me on Mestinon which helped a little. My neuro upped the Mestinon to 60 mg every 6 hours. He is ordering a chest CT to check my thymus and talked about a thymectomy. He is also my Lyme doc, we went back through my chart over the last two years and found so many things that were clearly MG. He tested me and I have very poor neck strength, finger strength, etc. He referred to the ER doc who would not admit me or call him as he asked as an "asshole" repeatedly.

I also just tested positive for Rocky Mountain Spotted Fever. It's probably been lurking in my body for years from an old tick bite. Now I have to go see a special infectious disease doctor for that.

I started Physical Therapy and I HATE the PT. She refused to order me a wheelchair because she said if I can walk up and down the stairs I don't need one. I tried to explain MG to her but she doesn't get it at all. Later Blake told me her jacket said "USMC" on it.

Did most of you get a thymectomy, because it seems to be recommended in everything I read? If you get it, do you still get IVIG? Oh and I have an appt with the MDA clinic next week.

Sorry about the infection, I'm glad it was discovered so you can get treatment.

I did not get a thymectomy, my CT scan showed no problems with my thymus.

I'm happy the mestinon is helping you some.

Tracy, Good, I'm glad the appt. went well.

Give the Mestinon time. Remember, you've been without proper treatment for a long time, so it will take longer to recover. And it may be the spacing between doses that does you the most good, not necessarily increasing the dose amount. How many hours do you wait between taking it?

You may want either an infectious disease doctor and/or an immunologist to check your IgA, IgD, IgE, IgG and IgM to see if you have a deficiency or more that make you more susceptible to infections.

The PT guys probably all have one basic goal: Make it better. So until she sees you a few times, she probably won't "get it."

I hope you will invest in an oximeter for yourself. Or go see a pulmonologist, which you should anyway for full PFT's, and have them write you a script for one.

Sooner or later, the ER will "get it" too.

Hang in there.

Annie

Thank you for checking in with an update Tracy. When I saw this new neuro was testing me for Lyme I knew someone here had it but couldnt remember who. So so glad your neuro saw you and have one that is so great.

Annie59

I'm now taking 60 mg of Mestinon every four hours. The visiting nurse fired the PT lady right away.

Thank you for telling me the Mestinon can take time to work; I didn't know that! My neuro has tested a bunch of IGG and IGM stuff, but I can certainly make an appt with an immunologist; my son sees one.

I"m having a Pulmonary Function Test next week. At my VNA visit this week, my pulse ox was 96.

When is it bad?

Annie, check out www.lymefriends.org and www.lymenet.org.

Thanks, Tracy, I've already checked those Lyme sites out. I'm a bit of a nerd when it comes to learning anything, not only medical stuff.

With pulse oximetry, numbers can be deceptive. It's not only what it is when you're sitting but when you're moving around and when you're sleeping (when muscles are even weaker). I hope they will do an arterial blood gas on you. Make sure they do the MIP and MEP breathing tests!

"When is it bad" is different for everyone. For me, I knew when I was overall weaker and my O2 saturation was not going above 94% no matter how much I rested that I was in trouble. That combined with my MIP/MEP two days before and the sudden shortness of breath episodes sent me to urgent care and then to the hospital for a week.

What the pulmonology techs often do with MIP and MEP is only show the highest number. That's silly with MG. Since MG is all about fatigable muscles, showing a neurologist (and pulmonologist) all of the numbers is useful. My MIP went like this right before my crisis: -61, -55, -43, -32, -31. I was feeling horrid too. If they would've looked at only the -61, it would've looked like I was fine when I wasn't. My normal MIP is in the -80's. It's not only the "absolute" MIP or MEP numbers but the percent of decrease in those numbers that matters. And when a MIP gets to about -21, it's time for doctors to consider a Bi-Pap or intubation.

Oh, and don't forget to ask the pulmonologist about an overnight oximetry!!!

Did you have the striated antibody test done? Sometimes that is elevated in those with a thymoma.

I hope you will take it easy, yet get more help!

Annie

Annie,

what you say here can't be stressed enough. It is the essence of MG care, and falls in the crack. From my (fairly extensive) experience neurologists basically know that the hallmark of MG is fatigable muscle weakness, but for some reason they find it hard to apply this knowledge to the respiratory muscles.

pulmonologists know how to recognize respiratory muscle weakness, but they get puzzled when it is fluctuative like that.

The net result is that your symptoms become "unexplained". And no one understands how you "suddenly" collapsed and require respiratory support, after your "anxiety" attack.

In my specific case it led to a ridiculous letter I got from a pulmonologist-she requires intermittent respiratory support and is unable to walk more then 50 meters without respiratory decompensation. her vital capacity improved from 100% in the previous visit to 110% now. (the fact that it went down to 50% on the second attempt because I was not "putting enough efforts" according to the resp. tech, who didn't even bother to mention it on her report, was not addressed of course).

and another one I recently got from a neurologist- "During the infusion of the medication she was very unwell, there was no significant deterioration in her respiratory condition but required the support of her bipap".
(needless to say that the memory card report I got from my resp. tech, showed that I was not even able to trigger my respirator at that time, in which there was no deterioration in my resp. condition).

Glad to hear that you have some direction now Tracy.

I was started gradually with Mestinon and have gotten relief from it. I now take 60mg every 4 or so hours 3 times a day unless I go out at night and then I take another dose. I recently went to 90mg once or twice a day as my speech slurring increased but I hope I can cut back again if it returns to a better level.

Hang in there and keep gathering information.
Sue