sudden onset weakness
 

Three weeks ago my occular mg was in remission. I then had zpac, whch gave me diarrhea, which was closely followed by gastroparesis. My eyes, as at first, became extremely sensitive to sunlight, resulting in ptosis. After a long go-around with gastric problems aggravated by mucous and saliva draining into my stomach (btw, I still have a lot of stomach acid), my dr. sent me to the ER. They found a UTI and gave me antibiotic by IV, depite my protest; they also found potassium deficiency most probably caused by my suddenly stopping eating rather large amounts of cashews.

So--have noticed at night (paresis is gone and I am starting to eat and am able to take my mestinon regularly again) my knees buckling plus a forward bend to my body when I walk. Today I walked to the mailbox to pick up delivery from Medco. On way back I could not stand straight not make my legs hold me up. OK--have the service dog bring my phone to me; whoops, had not put his service jacket on. So I just sat down in the rain on the drive for a fairly short while. Got back up and was able to make it inside the house ok.

Question, or just a request for an opinion: What are the odds that I have brought on the generalized condition I did not have before illness? Has anyone gone from occular remission and no generalization to muscles through a more total episode that lasted permanently? Or did not last once illness, deficiency was resolved?

I am waiting for first visit to my new neuro who is really, really good. Rural area, but it has some excellent doctors if you can find them; this is university town with nursing school also. Problem is usually long wait to get in first time. Getting with, and staying with one of these would be best for me; my mg care got screwed up in first place cause family doctor did not want me to wait for the neuro appt. with the dr. we both knew was better.

From what I have read, it is not uncommon for MG symptoms to progress beyond ocular to generalized. Others here will be able to give you the statistics and the rationale -- I just remember reading that it is not 'for sure' that it will - but it is not uncommon.

I'm sorry to say that the odds of occular myasthenia becoming generalized are pretty high. Here's a study that says 50% within two years:
http://www.ncbi.nlm.nih.gov/pubmed/12580710

Here's a link that says 50-60%
http://emedicine.medscape.com/article/1216417-overview

The episode you describe, where your legs just can't hold you up any more and you have to sit on the ground for a while, is very familiar to me. I haven't ended up on the floor in quite some time, though, because I've learned to notice the warning signs in time. I also try to avoid being out and about at the time of day (late afternoon and evening, for me) it's most likely to strike.

It's very common, as you know, for an infection to trigger a worsening of MG. As to your question (if I understand right) of whether this could just be a passing episode, I haven't heard any stories like that, but you never know. MG is pretty unpredictable. Rest, rest, rest, OK? And keep that service dog ready to go!

Abby

Chances are that the Z-Pac caused some problems; it's also possible that the IV antibiotic they gave you also caused problems. As you probably already know, many antibiotics are contra-indicated with ANY form of MG.

I know when I was in the hospital in December (for totally unrelated problem), the doctors were trying to get my blood pressure lower, so they gave me a beta-blocker. BIG mistake.....

If it doesn't get better in a little while, I'd be concerned; right now it might just be your body trying to get the medications out of all of the nooks and crannies -

The only decent list of antibiotics affecting mg that I found was from Australia, which is ok. But it was not a comprehensive list of what's being used here.

Here's the most comprehensive list I've found, though this one is from the UK:

http://www.mgauk.org/main/mgdrugs1.htm

Abby