I have related something about compromised sensing of balance and equilibrium. I wobble when I walk.
Other body senses also seem less active than only a short time ago. I have noticed, in this colder weather, that my sense of temperatures at the skin is somewhat diminished for certain parts of my body. My legs, especially. I can stand out in the cold wind, freezing my hands and ears and my face, but my legs fell no chill. In the shower, I sense the heat deeper within my body apparently, but have less sense of the heat directly on my skin. This is a curious effect, with consequences unforeseen, as yet.
Yesterday, at the neurologist, my dad asked him about this sensory deficit, and if I am likely to regain some of this functionality, or if it is gone forever, like his peripheral neuropathy effects. The neurologist shrugged and replied, he did not know.
That seems to be the nature of so much about this little adventure. I am charting a lot of unmapped and unknown territory. Who can say what there is to discover? Who knows what is possible, and what is not?
I will find out for myself.
10 comments:
Thanks for this update, Jim, and for the picture at its head, which I looked at carefully. I might show it to my 11-year-old daughter later. She's becoming interested in the physical environments we call bodies, human and animal.
I don't know anybody else but you who is journeying on such an adventure (except, of course, for me with my special needs daughter, but that's at a lull right now). Your reports from the front give me material to think through as it relates to my own circumstances.
I'm grateful that your neurologist was honest enough to tell you that he didn't know what if any of your sensory losses you might get back. You're right--you have to find that out.
I'm grateful you're sharing so much of this journey, and I'm honored you let speak me with you about it. I understand how much trouble it can be when people, not knowing what to say, say the wrong things. Off and on, I probably do that myself, but I know you'll take what's useful from what I say and apply it as you see fit.
Again, thanks, Jim. Forget all those other blogs, the ones that think they're doing something important. The Snail Hollow Gazette is the place to be.
Our brain is our own personal 'black box'. Nobody gets in to access the information unless the plane completely crashes. And the interesting thing about that is that once our bodies "crash" completely, the brain ceases to function. So nobody will ever really understand the brain's function.
My personal belief is that neurologists are voodoo doctors. They like to think they aren't, though. It allows them a huge ego, and a very large billing staff. Otherwise you could pay them with a chicken.
So what else did the neurologist say? How about the PTC stuff? Did he blind you with a little light while looking at your optic nerves? What did he say to the idea of a lumbar puncture? If you get no further results with him. I want you to go see my neuropthalmologist at the Moran in Salt Lake. She's great - no BS, and will take you seriously. You'll like her, sometimes. Sometimes I want to poke her in the eye, just for fun, but I feel that way about all doctors. Don't you?
Patricia,
I am gratified to hear that you find some value here. Not sure it is anything but a senseless exercise otherwise. I have discovered many things -- a few of them even surprisingly useful or interesting!
Ruth,
The neurologist considered the PTC differential diagnosis, but said he did not think it very likely. He did examine my eyes at some length. He did not believe a lumbar puncture was warranted, particularly since the current drug for migraine relief seems to be providing such good results.
He prescribed a larger dosage of the drug I am using, and said I could increase the dosage to some level that will hopefully provide continued migraine relief.
He did indicate that he was familiar with PTC and the practitioner you go to at the eye center.
Ruth,
What I would like to do to some doctors is beyond reason, and I'd better not say it here. Let's just say I think I have plenty of justification for feeling quite a bit of angst, focused on doctors in particular. I am wont to exercise a good measure of restraint here, because I also recognize how indebted I am for their help.
Well, it sounds as if your neurologist has the typical amount of ego. Does he have a personality? One of my pet observations regarding neurologists is that they spend so much time with their noses in a book (since they really can't get their hands on the object of their specialty), they lose their personalities altogether. It can be very amusing, and/or very infuriating.
Of course he doesn't want to think that you might have PTC, something which might be beyond the scope of his "expertise". And yet he has no explanation for your strokes. Migraines don't cause strokes, but intracranial hypertension does.
He has yet to offer you any explanation for your really serious symptom - the strokes. The headache is a symptom as well, and thankfully you've found some meds to help with that. That doesn't mean the issue which caused your strokes is taken care of. That is an egotistical an presumptuous conclusion for him to arrive at. How typical of a doctor!
I'm going to continue to be pushy about this. I'm good at pushy.
Please consider going to see Dr. Warner. I'm going to email her about you and see what she has to say.
Ruth,
I will certainly keep my options open. If you think Dr. Warner can help, it is worth a try. I'm just tired of dragging myself off to doctors just now. I'm feeling pretty good. Give it a rest.
HA! Me? Give it a rest???
Well, I've already emailed her. We'll see what she says. Take a break, and then if she thinks you should come, go see her next month, or in February.
You're my big brother. How can I give it a rest? I love you.
Ruth,
Speaking of black boxes, did you know about the Black Box on the San Raphael River? It is just down south of you a short distance. The San Raphael has carved out some of the most spectacular canyons and mesas on earth. The Black Box is a narrow canyon that you must navigate from upstream, when the streamflow is down. It involves some rockclimbing and a bit of wading in waist deep icy pools of water.
I have never climbed down, but I have ranged the cliffs all around it. Really spectacular desert scenery.
Also nearby is Buckhorn Wash, an extensive display of petroglyphs and rock painting from earlier canyon dwellers. Fun to look over and muse about what the artists might have intended.
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