AWESOME!!! Well, not the MG part, but the fact that Dr. Kaminski's reputation is accurate. There are some truly great neuros/MG experts out there.

I did the same thing you did, and sought out an expert. MG is an odd disease, but, IMO, that's what makes the diagnosis so obvious. Besides LEMS and CMS, MG is the only disease where muscles are fatigable.

Just don't think you're superwoman now! Give all of this some time to sink in, and take it easy. There's a lot to learn about the disease. Managing MG is an art form.

If you haven't already, go to Home to learn more. Or PubMed or any other good sources.

I urge you to find a good pulmonologist as well. I have some pdfs of articles about a MG crisis, etc., if you want them.

Thank you, Dr. Kaminski!!!


Annie

Annie...your recommendation about the Pulmonologist is right on. Dr. Kaminski told me the exact same thing. I did bring him my PFT study results for review. I was already seen by a Pulmonologist following my first respiratory issue and he prescribed Azithromax and a Ventolin inhaler. I told him that I didn’t think MG patients could take this antibiotic but he said it was ok. That’s when Dr.Kaminski told me to download the “MyMG” app and reference it when doctors order new medications. He showed me his app! He bluntly told me to find another Pulmonologist! How’s that for looking out for the patient?

I have a question re: prednisone tapering. I’m on day #2 of tapering from 60mg to 50mg and feel “off”. Very tired and achy. What side effects can I expect on a prenisone taper?

My first IVIG infusions are next week, along with a chest CT to evaluate the Thymus. I want to be at my best for these infusions. Any advice here from the community would be welcome.

Also, I’d love to read your articles mentioned. Please, do send.

Barbi-girl

I would caution that some MG patients can't handle Z-Pak. I personally do fine on that and Biaxin (Clarithromycin). Quinolones are relatively contraindicated as well. DO NOT take Ketek (Telithromycin)!!!

I've included some of the pdfs for you. Knowledge is key while managing MG. You can do a search on MG + myasthenic crisis and find more info. If you are ever unsure about a drug, search "drug name + acetylcholine" to see what effects the drug has on reducing or increasing acetylcholine (or no effect).

Some patients can't even handle a 10 mg. drop in Pred. Track all of your symptoms. If you begin to be extremely tired, have sweats, or feel just completely out of it (or weaker), then the drop is too fast. As I said, you can have an adrenal crisis if this goes too quickly. Even a great neuro is not an endocrinologist! Those adrenal glands need some time to catch up to withdrawal.

A pulmy can figure out what your normal MIP and MEP are, and other readings. That is key if you begin to have an exacerbation. If you say where you live (general area), someone might be able to recommend one. There's no time to mess around with a substandard pulmonologist during a crisis! And do not let anyone tell you, if you have hyperventilation during an arterial blood gas, that you are anxious!!! The hyperventilation would be from insufficient breathing. Yes, doctors have been known to do that.

My biggest advice would be to let this simmer for a while. AND don't push yourself. That's how people end up in a MG crisis. The worse someone is with MG, the longer it takes to recover. Maintaining some kind of stable normal instead of sending your body on a weakness roller coaster ride is the best plan!

We are very lucky to have doctors like Dr. Weiss (St. Pete, FL), Dr. Howard (UNC), and Dr. Kaminski to help us. There are more, but those are a few great ones.


Annie

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 14 views)
	MGRespiratoryComplications.pdf (95.6 KB, 12 views)
	NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 35 views)
	NonInvasiveVentilation.pdf (76.9 KB, 12 views)
	Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 8 views)