Sat Mar 31, 2007
Awake, Alert and Oriented x 3..... [Whining and Complaining]
Ok, there's good news and bad news. I'll give you the good news first.
My blood pressure is back to normal. I don't have obstructive sleep apnea. I saw a qualified neurologist yesterday. I have a week off from work. I got a new inhaler. I lost 7 pounds. The neurologist brings his dogs to work, so I got to hang out with two golden retrievers. The Hub went with me to both Dr. appointments, so he knows what's going on. I have some new medication which may be helpful to my overall condition(s)
The bad news is.....
it seems quite likely that my whole central nervous system is being held together by the biological equivalent of a piece of chicken wire. Sorry. That's probably an overstatement. It's just that I was a little overwhelmed by the neurological consult with Dr. DogLover.
Some of the problems are not new. I had my cane with me, and the whole story of how I managed to get nerve damage in my left leg went along pretty much as expected. Well, except for Dr. DogLover was a little horrified by the type of care I got up in MA.
"What do you mean he said 'here's your walker, there you go'?" he asked.
"I mean they gave me a walker, they said my problem was too complex for physical therapy, and asked me how much of what kind of drugs I wanted. I told them to put the prescription pad away, thanked them for their time and went out and self rehabilitated myself as best as I could, on account of it's hard to self rehabilitate other people."
To The Hub "She's not kidding?"
"No, that's just how she talks. But that's what happened in a nutshell"
"Was the person you saw a doctor?!"
"He was an internist"
"Ok. At least he said he was." Dr. DogLover took a deep breath and readjusted his glasses.
Also, the diagnoses of "gait disorder" is hardly a shocker. This was all language I'd heard at the chiropractor...feet turned inward, overcompensating for the scoliosis, okay, we all do what we can in the interest of continuing to walk around.
What was new was finding out that the feeling of being "zapped" I get sometimes while sitting in a chair might be a form of epilepsy. Dr. A. said the sleep study was "inconclusive", but Dr. DogLover read it to us and said, "Well, it's not useless. You see, it takes a healthy person about 90 minutes to reach REM sleep. It took you...what's that? 4 hours. They call this "inefficient sleep". I bet that sounds like sort of an understatement to you. Then you spent 34 minutes in REM sleep and suddenly for some reason woke up and at that point they stopped the test. You didn't even make it into the 4th stage of sleep at all. Were you tired when you got home?"
"I went home and slept for 4 hours"
"Okay. When was the last time you had a good nights sleep?"
"1998" The Hub said under his breath.
"I don't remember" I said.
"I was afraid you were going to say that. So, if you could ever get into deep sleep, who knows what you would do. This test doesn't tell us. But you are, however, getting enough oxygen in your blood in stages one and two, so that's good. Let's test your reflexes"
And that's when the wheels really came off. Close your eyes and touch your nose with your right hand. My heart thudded as I felt it come to rest on my left cheek. Try again, Dr. DogLover said calmly. I did, moving my hand much more slowly, and it came to rest on my nostril, not the tip I was aiming for. Practice makes perfect, he said, but if I were reading this on somebody else's medical records, I'd stop there and look toward the back for - well...no need to borrow trouble. It could be lots of things.
Okay, he said, I know you have reflexes in your arms, he said. And I did,but they weren't very strong. My legs,though, flew up wildly. And the reflexes in my feet....I just looked down at my own feet in dismay as, no matter how hard I tried to do anything he asked me to do with my toes they just all splayed upward and apart.
And, of course, my hands were still trembling.
"You're going to need three separate MRI's, an EEG, and eventually, a nerve conduction test."
"Those are all tests I've had in the past at various times. They didn't show anything. I'll go to all this trouble to have those tests and they won't show anything."
"When? When did you have them?"
"The last MRI of my brain was 5 or 6 years ago. I had an EEG when I was 14, and a nerve conduction test in my 20's. I was always really fine. Every body always thinks I'm making this stuff up."
"Your reflexes are out of your conscious control, and depression does not cause these reflex problems. You have symptoms that don't point to one problem. I think you have more than one problem. If you had doctors in the past who, when they had symptoms that didn't make sense just disregarded the symptoms because they didn't know what they meant that doesn't make YOU mentally ill. If nothing turns up on these tests all it will mean is that we have to look harder. And I'm very concerned that you may have something really serious wrong with your neck. It's important that you stay with this process until we can find out what's going on. Mr. P., I want to enlist your help in this cause. Your wife is not crazy, she is not making stuff up, if she gets discouraged can I count on you to help her not to give up?"
"Of course."The Hub said.
I was so overwhelmed at having my problems taken seriously that I didn't even ask what a neurologist would consider "a really serious problem" in my neck. I decided that I don't want to know, right now. I just want to take it one step at a time. So on Monday I'll start calling around, fighting the insurance battle, to get the MRI's done ( lumbar, cervical - that's the neck- and brain. That one'll probably be blank.)
Oh. And I'm not claustrophobic. That's another piece of good news I forgot to mention.
i like this dr -- he sounds like he's going to get to the bottom of the problem(s). hang in there and, again, PLEASE PLEASE PLEASE let us know if there's anything we can do to make life easier on you and The Hub.
Posted by: donna at March 31, 2007 4:44 PMbtw, i don't think i'd categorize your entry under "Whining & Complaining" -- you're not just whining, your symptoms are very real!
Posted by: donna at March 31, 2007 4:45 PMYou really should talk to him about your "Gettysburg Syndrome". Since the topic of epilepsy has come up (and you scoffed when I suggested epilepsy or narcolepsy a year or so ago...) it would be beneficial to him to get even the oddest neurological symptoms.
Posted by: RobAtSGH at March 31, 2007 6:34 PMWOW, Woman!
I am SO relieved that you have found someone who is taking your symptoms seriously!!! Stick with this guy.
I'm so glad that you got some real sleep, too. It is worrisome that (for you) REM sleep is an accomplishment. Your poor brain!
Posted by: Theresa at April 1, 2007 1:25 PM