So good to hear from you! I had been hoping you'd already been seen! Sorry you're having to wait! I'm all for phoning- sometimes these things are just buried on a secretary's desk!
About the stiffness you describe- my mother-in-law does get a very mild form of that and it really sounds like myotonia . Sometimes after carrying in grocery bags her fingers will need to be opened up by her other hand as they are a bit frozen in a closed position. Also, more often- her toes bother her at night- her big toe will just pop up and freeze in a weird upright position, waking her up. To relieve it she has to get up and walk around on the thick carpeting in her living room for a while. I think myotonia is not listed in the official symptom list for ATS, just as the urinary issues aren't, so sometimes when you bring these things up they don't fit neatly into the pre-designed"box" that some physicians assign patients to.
Thinking about it, my son had just recently mentioned he felt "stiff" , but to my knowledge it was the first time.Not something happening frequently to him anyway.
I can't wait till more symptoms are officially documented and acknowledged! It will make such a tremendous difference for everyone- now and in the future. So on my end, I do report symptoms honestly but very carefully and document them in a notebook I keep as a journal of my son's meds. attacks, symptoms possible triggers etc.
Kathy- I just thought I'd mention that Dr. Shannon Venance also works in coordination with Rochester and they do recommend her- so that's a hopeful sign!
I love your new term- SOMAW- I definitely qualify for that too! : )
Just so you both know- I'm leaving for rochester for 5 days starting tomorrow and don't think I can pick up this site. I can pick up e-mails on my cell phone though. If anyone wants to exchange e-mails off list I'd love to, now or in the future. Hmmmn- I'm trying to figure out how to do this w/out posting it on the world wide web...
Well, I'm clueless- so- here goes:
Take Care All-