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Weeks pass by.  So do neurologists.

Jul 02, 2009 - 1 comments

I posted some of this in a forum thread, but I think it more properly belongs here.  Some is borrowed from my latest mass e-mail to friends and family.

Well, what can I say?  God is still at His best when I am at my worst.

To summarize the events of the past few months, after Loretta's passing on to heaven, I have continued to seek medical answers, but found few.  I've continued working for the county, but find it increasingly challenging for a variety of reasons.  I continue to pursue success for the church, and it has seen a few spurts here and there, but I can't yet say it's really anything to write home about.  There is a bright spot, though.

Medically, the several neurologists I've seen have all noted that I had a series of migraine episodes in 1997, and one in February.  Because of that history, they have concluded that I must be suffering an odd variant of migraine.  They've summarily dismissed my  protests that this is nothing like those other experiences, nothing at all, and  they have prescribed treatment for migraine that hasn't worked, has had many  unpleasant side effects, and in one case, directly contradicts the drug  manufacturer's emphatic warnings against using it in patients of my  description.

I continue to have big problems with balance, a peculiar area in my field of view in which there is a general graying-out of everything, and inexplicable tactile sensations of all kinds, from head to toe.  The tremor I’ve had for years is now much worse.

Monday, I returned to the neuro-ophthalmologist whom I had seen about six weeks before.  He is the one specialist who has listened with seeming interest rather than condescension, and the one who has prescribed something that has actually helped, though it has been an ordeal adapting to it.  Thanks to him, I have far less pain behind my eyes, which had become severe.  He supported the possibility that I could be suffering migraine, noting that his own migraines had changed over the years.  However, he didn't have an explanation for mine suddenly becoming,  for half a day in February, just like they had been in 1997, and then just as  suddenly reverting to the pattern I've been experiencing since October (with a  preview a year ago this week).

He is notably also the only specialist so far to acknowledge what I have been fearing, that my problem might be multiple sclerosis.  The others have all dismissed that as a possibility, but have done almost none of the testing that could support such a decision.  Their argument is that I am not a classic, textbook case of MS, while admitting that there really is no true classic, textbook pattern of MS.  MS manifests itself in many forms, and varies from patient to patient, and from day to day within the same patient.  It is a very difficult diagnosis to confirm, requiring the elimination of a host of other possibilities along the way.  In other words, the doctor really has to work at it in order to find out if that's what the patient has.  

Many MS patients have told me that my symptoms align with theirs.  I've seen very little similarity between these symptoms and anyone’s migraine experience.  Those same MS patients usually say that they sought answers for months, and often years, before they could find a neurologist who would simply do what needed to be done to settle the questions.

He agreed with me that it was probably time to seek yet another opinion, and he happened to mention another neurologist whose name I’d been given by a co-worker, and by a friend and church member.  I had held his name in reserve when I heard such good things about OSU, in case they wouldn’t accept my case when I was originally referred down there.   Yesterday, I left a message for that doctor's secretary.  This morning, while she and I kept missing each other's phone calls, someone called his scheduling team to cancel an appointment for Thursday, July 9th, leaving that as his only available time for the rest of July.  When I described for her everything that has been going on, she immediately put my name in that spot.  Her exact words were, "Pastor Dan, you and I both know that this person didn't just call a short while ago to cancel this appointment out of sheer coincidence."  I had to agree.

Also next week, I am to review with a neuropsychologist the exhaustive battery of mental and intellectual tests through which I sat in April.  His report stated that I scored well above average in many areas, but noted two points of less-than-stellar performance.  If I understand the terminology correctly, these points might be particularly indicative of MS, or one of several diseases that share some of MS’s characteristics.  It will be interesting to see how that goes.

I mentioned that there are multiple reasons why work at the county’s not so great.  Some of those reasons are mine, such as my health.  Some of them are economic, as there seems to be still very little construction work of any kind coming in the door.  Still, I'd have to say that the majority of the reasons why it's becoming less and less satisfying are within the county's management conglomerate.  I'll not elaborate, except to observe that I am more convinced every day that the problems in government at every level are not entirely a matter of party or philosophy, but instead stem from a built-in mediocrity driven by a need for self-preservation over self-improvement.

As George Burns said, it's too bad that all the people who know how to run the country are busy driving cabs and cutting hair.

The church has been quite rewarding, whether or not the numbers reflect much.  If you're possibly going to be in the area, reserve Friday evening, July 10th for our 10th Annual Car, Truck and Motorcycle Show and Bean Dinner.  Vacation Bible School runs the following week.  If you won’t be here, please pray for us.  Last year, the weather did us some harm, on the first try and at the rescheduled event.

Okay, my bright spot is something that many of you already know something about, obviously some more than others.  For some of you it may be a shock.  It was to me.  In His infinite wisdom, God has unexpectedly brought a new lady into my life who I can only say must have been His pick.  The degree to which we found ourselves in immediate agreement is nothing short of astounding, and I'm not talking about favorite colors.   Our outlook on life, our faith, our sense of right and wrong, our personal priorities and those we wish for our society, and more things than I can name are areas in which we are so consistent with each other's beliefs that it's -- well, it seems that the same coincidence that opened that medical appointment for me was merely the wind off the many such things that have lined us up together.  Her name is Nancy, the same as my youngest sister's, so I’m calling her Nancy Fay to my sister's Nancy Jane.  She lives 20 minutes north of me, works as an administrative assistant for a school superintendent, and she has three adult children from her first marriage, and a 13-year-old son from her second.  I was with them when he won the blue ribbon for his 4-H photography project at their county fair Monday night.  Our dogs even seem to be thrilled with each other (though Bandit's been to the doctor for that permanent puppy prevention treatment).

Anyway, more than one person has asked for an update, and I didn’t mean to spend the evening writing it, but here it is, and I hope you read it much faster than I wrote it.

Shalom.

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by Sarahsmom46, Jul 02, 2009
What a very wonderful update.  You have two bright spots in your life right now - Nancy and the neuro appointment.  It appears both just fell out of the sky when you needed them most.  My heart is smiling for you right now.

As far as commenting on the medical journey you have been through...All I can say is that you are an MS patient period!  The sooner they get this sorted out and finalize a diagnosis the sooner you can be started on treatment.  That day is coming so get ready for the decisions you will need to make about the treatment.  

Take good care and let me extend a Shalom to you and your family.



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