Update
 

I never responded to the thread asking whether the toe (surgery?) went okay, so I thought I'd leave an update.

The both toe nails went okay. One is still healing. I'd been doing okay in general, except for a sleep apnea issue due to the muscle relaxants and the myasthenia--but I was dealing with that.

Then yesterday, I had a major SPS flair. I knew the meds needed to be adjusted as they were less effective, but this came out of the blue. Woke up and was completely unable to walk. In hindsight I should have gone to the ER for IV benzos, but my Mom kept telling me I had to get into work, and complaining I wasn't moving fast enough (its kinda hard when you can't move). I ended up doubling up on my muscle relaxants, which got me into work. I was a little better today, I'm hoping the trend follows tomorrow.

I have an appointment Thursday with the neurologist so hopefully everything will get sorted out.

I am glad to hear that one problem is solved, I just wish that your family understood the seriousness of the SPS diagnosis and the symptoms that you experience. It is important for you to have a support system to help you deal with these illnesses especially when you have a flair up. It can be dangerous if you ignore your body and try to continue your day as if you were healthy. You are not!

It would be good to have an open conversation with your neurologist about your situation if you haven't already. Maybe he/she can suggest some way to get through to your family that you don't have a bad cold or the flu but a rare serious illness. You really need support and I speak from experience.

Good luck.

Becky
Southern Bell

I hope that your family can learn to be patient with you. I really know how you feel there. My husband is good with things; he understands. My sisters are always wanting me to put a lot of time into helping take care of my 89 year old parents that live 200 miles away, and I just can't do it.