Hi! Been reading the responses. VERY interesting.
Managed to get a neuro consult yesterday morning. My EMG was NORMAL, which was surprising because the last one in 2004 wasn't. Sweat test, as you probably figured out, was normal too.
The neuro's name was Dr. Joon Uhm. Nice guy. When I asked him if the normal EMG might have been a sign that my neuropathy was actually going away (and the new buzzing sensations a sign of healing), he said that Sjogren's isn't always progressive, that sometimes symptoms wax and wane with the illness, so it may not be entirely gone.
He was concerned, however, about my stroke-like episodes. I get these horrible migraines accompanied by speech and cognitive impairments and motor skill problems. I've had the most obvious potential culprits, like MS and actual stroke, ruled out, but this doc wanted to make sure we weren't overlooking anything else before we attributed the episodes to Sjogren's.
So this morning, I had an MRI of the brain with contrast to make sure there weren't any blood vessel problems or even lesions that maybe weren't there when I had my last one three years ago. And tomorrow, I'm having a heart test where they put a tube down your throat with a camera on it to look at the top part of the heart to see if there are any small holes in my heart causing problems. And they scheduled a lumbar puncture.
But when I went through all the tests in the order they were scheduled, I saw some potential problems. The last time I had a lumbar puncture, I had a spinal tap headache so severe that I vomited every time I sat up, for an entire week until I went to the ER for a blood patch. The only time they could do this was this afternoon, when I still had two tests and four consults left to do.
The other problem is that they had scheduled me for a tilt table test the day after the lumbar puncture. Not cool, being told to lie flat and rest and then all of a sudden being flipped around to see what my blood pressure does. And the heart test requires fasting and the potential use of drying agents in the mouth, where the tilt table test scheduled for later that day they want you to stay hydrated for 48 hours prior.
So the first thing I did was get cancel the lumbar puncture with the neuro's permission. He said I could have it done back at Sioux Falls when I don't have any other tests to do afterward. Then I went and did my pulmonary function test, which I think I might have done ok on.
I tried to get the autonomic test changed to today so there won't be any conflict with the heart test. I was on standby for two and a half hours, and they got me scheduled for 2pm today. If I get done early enough, I'm going to see if I can squeeze in the pulmonary consult.
That leaves the heart test for tomorrow morning, and I'm going to try to get the re-check with the neuro moved up if I can so I get my final visit with the rheumatologist maybe before close of business Friday so we can get back to Sioux Falls on the weekend. My husband is only authorized to be off work this week, and if I have to stay longer, he'll have to drive back and get me later, which seems a waste if all I have left is an ENT consult and the final wrap up with the rheumy.
My fatigue has been absolutely horrible. I have dozed off in the wheelchair every single day pretty much any time I have to sit still for more than 30 minutes, during just about any test that requires me to lie flat, and back at the hotel room while watching tv or a DVD. Had a mini-meltdown yesterday where I was so exhausted I wanted to call off all the tests and just go home.
But I might as well get it all done while I am here, even if I am discouraged because all my tests so far are indicating that I am just fine. That would be awesome if I felt as fine as the tests said. We'll see how the rest of the week goes.
My husband and I did go to dinner yesterday, at 4pm since I need plenty of time to digest restaurant food before retiring at night. We'd gotten four more inches of snow, but it was nice to go somewhere besides the hospital. We're supposed to get more snow tonight, and then more snow on Saturday, so that may also dictate when we head home.
Time to head back to the neuro department to see how early they can get me in to the tilt table test. I prefer to think of this one as my amusement park ride.
Will pop in if there's time tomorrow.
fanfaire
