Abby,

You mentioned your episodes again. I know you have read about periodic paralysis, did you ever trial the medications for it? You're right - your case is not typical for it. But are you typical for MG? In addition to considering other MG therapies, would it hurt to ask your doctor if a Diamox plus potassium trial might be appropriate in your situation?

Diamox doesn't help all patients with ion channel disorders, but it might be worth at least a try. Ion channel disorders are known for episodic symptoms. You've talked about losing your balance, have you read about episodic ataxia?

You have also spoken recently about hormones and circadian cycles, both of which are triggers for some people with HKPP.

I know 4 people with HKPP who were originally diagnosed with MG, and even had positive responses to MG treatments, but not as much benefit as they get from HKPP meds.

A 5th person I know was originally diagnosed with MG but now is believed to have episodic ataxia (also a channelopathy.) She has weakness very similar to mine, and once she got on Diamox plus prescription K+ (same meds as treat HKPP) she "can't believe muscles can work so well." (The first time she tried Diamox, it made her weaker... she didn't get the prescription potassium to go with it. That's what happened to me when I tried it.)

You know I've been struggling with diagnosis, and have most of the same concerns as you do about not being a good "fit." However, just as with MG, not everyone with HKPP is a textbook case. HKPP can be sporadic. Initial onset has been documented in patients as old as 80. Potassium levels can remain within the normal range even during an attack. Many of the patients are not fine between episodes (I went to the 2009 conference, and a great many require the use of wheelchairs on a full-time basis.) I don't have a good answer for the "better in the morning, worse at night" dilemma that we share, unless it's an episodic ataxia or other channelopathy thing.

I just got a trial of Mestinon recently, but if that doesn't pan out soon, the next trial for me will be the Diamox. The good mornings/bad evenings and eyelid/facial involvement had me leaning toward MG, but recently I was put on Propranolol. I read it can be used to treat HKPP, but has the potential to make MG worse. So I took it cautiously to see what happens.... I seem to have fewer severe weakness episodes on it. So I'm thinking I need to check HKPP better for myself.

Sorry this is so long. Whatever route you end up going, I sincerely hope you find SOMETHING that works for you!

Tatia