Many, many moons ago, I told people on Twitter that I'd decided to go ahead and get another MRI and to have a GP send me to an MS specialist (my first ever visit to one). While I was trying to decide on that, though, the GP who had been so sure this was MS moved away and this was a new GP for us. But, he said that, based on the prior GP's notes and thoughts that this is MS, he'd send me wherever we wanted to go.
So, after thorough research, we found an MS specialist a four-hour drive away. We'd need him to give the MRI orders, but figured we might as well have him examine me, too. After the exam and our request for an MRI, he wrote up the orders and sent them to this new GP.
Hubby did extensive research and found an independent group that would do an inexpensive MRI (taking cash rather than put it on our insurance). This particular MRI was supposed to be more specialized in looking for lesions. He looked all over the nation for an MRI machine that could do it. We asked the GP to send the orders then we drove the 1.5 days it took to get there.
This group had assured us over the phone that what we read on their website is true -- they had the imaging technology we were looking for. Yet, when we got there, we found out the machine wasn't any different than the one in the truck that travels to our hometown.
"This is not the MRI you're looking for..."
I'm not remembering all the labels and numbers (1's and 3's) for what we'd researched was the MRI that would find lesions that hide from the "lesser MRI machines," and I don't want to look it up right now. But, this wasn't it.
I could have gotten this scan back home, and we told them we felt mislead. They offered not to do the scans; to give our money back; to change the website. They said they'd talk to the receptionist and make sure it was understood just what kind of machine they did have so that people like us wouldn't travel halfway across the country in hopes that they'd get a more thorough scan than they could get back home.
I was in tears of guilt and frustration when I found out, and it takes a lot for me to break down and cry. I wasn't sobbing, but my cheeks were wet as I called town-roaming hubby to tell him that the trip had been futile. This wasn't the machine he'd wanted nor that he was assured it was. We'd come this far for a set of scans we could have gotten at home. This likely wouldn't tell us anything different than all the previous scans. Once again, I'd be in limbo. What was the use of even getting the scans?
We'd come this far, though, we all reasoned. The tech assured us he'd do the best scan possible with the imaging equipment they did have. We were here, and the appointment was made.
Fine. I brushed back the tears, climbed onto the table, and endured the hours in the cold, banging tube. The scan was clear of lesions.
Okay....time to be thankful, and I am. But, what is it then? Subtropical Glutoneous Mange. Yeah, I bet that's it!
I should describe the visit to the specialist's office, too. I'll save that for Part III.
Meanwhile, sorry, folks, it's all in my head.... and my legs.... and my arms.... and my eyes... but... there's the line of doctors telling us as we whiz by on this rollercoaster:
"I think this is possible early MS."
"I can't think of what this could be other than MS."
"It is probably a trapped nerve, but definitely not MS."
"It isn't detectable."
Nobody knows what it is.
"It isn't MS; there are no lesions."
"I think it's MS, and I'll order a scan."
"This definitely isn't MS. In fact, I don't even think it is neurological."
Okay. I'm taking up residence. You can reach me at 102 SettlingIn Street, Limbo, USA.
