Limboland Revisited, Part II

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.

Limboland Revisited, Part I

Well, we're gathering for games with good folk again.  I tried a new game I'll mention in an upcoming post.  And, of course, we brought some old favorites with which to torture them.  Meanwhile, though, in this post, I'll be a hermit away from the gaming and do as I promised several a long while ago -- tell you some results.

I've been trying to live with the idea that maybe there's nothing going wrong.  Perhaps it was all a fluke. Perhaps I'm just aging or have something simple and what generations in my family have had -- arthritis...or maybe strange allergy symptoms.  But, the numbness and weakness in my hands/arms/legs/feet, the foot drop, the fatigue, the eye pain and blurriness, etc. have all remained. Even on cooler days, our 1-2 mile walks sometime end with my being barely able to drag myself back to our front door. Did I forget to make a lease payment on this body and penalties are kicking in?

I'm truly thankful this isn't worse.  It won't do good to gripe except to "lower the mask" so we can feel the human bond that comes from life in the same trenches, so I'll proceed with that in mind.

I've been able to tell myself that I am used to the goofy symptoms.  I try to ignore it.  I have for years.  I tell myself, "If nothing is wrong, nothing is wrong. Buck up!"

But, you see, I'm writing this in the wee hours of the morning because I wasn't able to ignore the leg spasms and hand jerks.  Thankfully, it wasn't keeping hubby awake, but I cannot say the same for myself.

Then, the other night, I got hot and got all shaky and headache-y.

Then, when I tried to be sociable and play a game in the upper room yesterday where the sun was beating in the windows and the thermostat was turned up, the world started to tilt again. Shakiness, weakness, eye-ache, and mild vertigo joined the party.  I got outside and rode with the group to dinner, but couldn't look out the car window because my brain and eyes got all jittery at the passing landscape, making me queasy and like the earth had been wildly tilted off its axis.

Walking toward the restaurant, I had to concentrate hard to keep my foot from dropping and tripping me.

Okay, okay...I admit, it gets a little hard to ignore...

Conversation as we were walking to the diner:
(Hubby explaining how I got hot and it was affecting me a little.)
(Friend offers his arm.  I decline.  Perhaps I shouldn't.)
Friend:  "So, it's decided this isn't MS?"
Hubby:  "Yes."
Friend:  "Well, that's a good thing, I guess."
Hubby:  "I think so."
Friend:  "Though we don't know what it is then."
Hubby:  "No."

Meanwhile, I'm listening from behind and starting to stray from the straight path because there's a smoker ahead, and I don't want to make matters worse for myself by breathing that in.  In so doing, I'm adding extra steps to my trek right when I just really need to get there and rest in a chair.  I'm silently telling my brain with every step, "Raise your toe.  Raise your toe.  Raise.  Raise.  Agh, don't shuffle; it'll be heard, and they'll know what a struggle this is. This is nothing."

And, I'm listening to the conversation and thinking to myself, "I didn't want to tell anyone in the first place. It was never sure what this is, and now I'm in limbo again and the mind games are back.  This is all in my head again; right up there where there aren't any lesions."  Yet, when the doc (during the 2012 vertigo) was so sure it was MS, we decided to just tell people so my symptoms and preventative counter-measures could be explained.

"Lift.  Lift.  Concentrate.  We probably shouldn't have told anyone.  I probably shouldn't have started that blog.  I have no business writing about MS."

Paralyzed Man Walks After Nose Cells Transplanted Into Spinal Cord

Paralyzed Man Walks After Nose Cells Transplanted Into Spinal Cord



It's really cool how much mankind is learning about the human body and coming up with techniques like this.  Exciting stuff!