rje11 Posted November 14, 2015 Report Share Posted November 14, 2015 I have a series of appointments at Mayo Clinic in Rochester coming up and would appreciate input. I will be having the autonomic testing (breathing, Tilt table, sweat test) and see a neurologist for my generalized dystonia. It has progressed to my respiratory system. I am concerned about how I am going to be able to handle things physically... My husband will push me in my wheelchair, but right now at home I get so worn out with hardly doing anything. I take at least one nap a day (usually have to dose with Valium and Benadryl for dystonia) and then go to bed at least by 9:00. My dystonia gets so bad that I spasm with every breath and just about every muscle in my body spasms. What will they do if I am unable to do the autonomic testing due to this? Under what circumstances would they change me from outpatient to inpatient? We are staying at Kahler Hotel, so I am not PLANNING on being an inpatient. The more fatigued I get, the worse the spasms are, though... Input appreciated!ThanksRje Quote Link to comment Share on other sites More sharing options...
htberg Posted November 17, 2015 Report Share Posted November 17, 2015 I don't have answers to your questions but I think I stayed at the Holiday Inn and it was actually connected to Mayo by a series of tunnels and walkways. It was actually quite cool b/c I did not have to ever leave. They had food courts, stores and restaurants connected. I went in Nov and again in Dec and it was very cold and snowy there so i appreciated just navigating inside to get everywhere. I'm not sure where the Kahler hotel is, but just thought I'd let you know this, especially if you will be in a wheelchair. Convenience is of utmost importance. I could also just go back to my room to rest in between appts b/c sometimes they were back to back and some days I might have one at 8 a.m, then not another one until 2 p.m. THey are also used to dealing with very seriously ill people so I'm sure they can accommodate you. For what it's worth, I also went in with a near-fatal cortisol level (very low) and they did not admit me. Quote Link to comment Share on other sites More sharing options...
rje11 Posted November 18, 2015 Author Report Share Posted November 18, 2015 Thanks for the information! I appreciate it! Quote Link to comment Share on other sites More sharing options...
Kpsos Posted November 18, 2015 Report Share Posted November 18, 2015 My doctor started the process about 3 weeks ago to refer me to the Mayo Clinic, I was wondering how long it took to get a response from Mayo about an appointment and how long did you have to wait to get the appointment. Quote Link to comment Share on other sites More sharing options...
rje11 Posted November 22, 2015 Author Report Share Posted November 22, 2015 Which one are you being referred to? I called and talked to the folks in FL first and they seemed way overbooked, so I had my doc refer me to Rochester. It didn't take long for me to hear from them, but they said the waiting list was very long and it would be next year sometime before I got in. I got worse, though, and one of my docs called and I am pretty sure they bumped me up on the list, as my appts are in early Dec. now. So, I guess the answer is it depends on which location and lots of other stuff. Sorry I can't be of more help.Rje Quote Link to comment Share on other sites More sharing options...
Kpsos Posted November 22, 2015 Report Share Posted November 22, 2015 Thanks for the reply, my doctor said it would be in Rochester.Kpsos Quote Link to comment Share on other sites More sharing options...
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