Wednesday, October 31, 2007

How do I feel?

All the medical mumbo jumbo to the side, people ask me, "but how do you feel?"

A great deal of the time I feel fine. I feel "bad" when I am having a headache. On a typical day I will have two to three headaches. My doc gave me some meds for the headaches, and it helps.

I often get dizzy and sometimes I loose sight in one or both eyes (but only momentarily).

I can't read very well, but I got a magnifying glass and that is helping a great deal. (When I can find it).

Sometimes lately I walk like I am drunk (but that does not effect the way I feel.

I am often fatigued. I sleep a great deal. I am really only good for one "outing" a day--then I have to rest. I over did it yesterday, and I had to lay in bed all morning today. But I "feel" better now.

I am in no pain (except when I am having a headache and only then does it get excruciating if I don't take my meds quickly enough or can't find them).

The absent minded professor routine I have been cultivating for years seems to be getting worse. My son gives me grief about it. He says, "must be the fungus."

He wants me to take him to a Colts game this weekend (his Pee Wee Football team is going). His mother was to take him, but he really wants me to go. David and Jamie Ramsay have agreed to drive us (their son Carter is also on the team). I am going to give it the ole college try. Wish me luck.

Tonight is Halloween. I tried to figure a way to work my brain biopsy scar into a costume, but it healed too quickly. Its not very scary now.

Thursday, October 25, 2007


Just kidding. We talked to my Neurologist. The last spinal tap, CT scan review, and biopsy of my eye turned up nothing new. More dead ends.

What they know: I have chronic meningitis, hydrocephalus, and papilledema. What we don't know is what is causing it. Can't treat until we know the cause. So, I only have meds for the headaches (which has helped manage the pain). But we are not solving the underlying problem. I haven't been to work since July 22. I had to go on short-term disability beginning August 14. I would really like to get back to St. Mark's. I miss everyone terribly. This whole thing is taking too long.

I am still to meet a new doc in November. He handles all the difficult neurological cases at the Mayo. Maybe he will be able to help. The Neurologist I am presently seeing began preparing me for another brain biopsy--this time they are going to want to attempt biopsy at the back and base of my brain. Procedure is riskier than the last brain biopsy, but they think they may stand a better chance of getting infected tissue.

Truth is--it is shot in the dark--but it may be all there is to do.


Friday, October 19, 2007

Back Home

We got back into town Thursday evening. Bad headache day on Thursday, but I have been better today. Hard to believe that we have been trying to get a diagnosis since August 1 and we still don't have a diagnosis. But that is the way it is. I continue to be hopeful that we are going to get answers. I just have to be patient.

Tuesday, October 16, 2007

Day One of Round Two

7:30 a.m. Neuro-Opthamalogy & Biopsy of Eye. Not as bad as I feared.

Then I went to Infectious Disease. All tests from Round One were non-diagnostic (i.e., they don't have a clue). Looks to him like a Fungal Infection of unknown origin and type. He ordered more tests.

So I then went and gave blood (lots of blood--both arms, several vials and bottles). Then I went for another Lumbar Puncture. Not fun. Having had two LPs in Louisville and two at Mayo--I'd rather have the LPs in Louisville. I thought I was a detainee at Guantanamo Bay, Cuba for a few minutes. I confessed I was a spy.

Then I saw my neurologist who said "You are a puzzle." Bottom line: He is sending me to what Katherine is calling the "uber-specialist" in neuropathology. The neurologist says he has to refer one or two patients a year to this "uber-specialist".

Meanwhile, they are testing the blood, spinal fluid and rechecking an old CT scan of my chest.

I get to come back to Mayo for Round Three in November

Questions: "When can I start treatment?" Answer: "When you get a diagnosis." The treatment for sarcoidosis is steroids which if it is a fungal infection would feed the infection, probably killing me. The treatment for fungal infection of the brain needs to be tailored to the fungus and all treatments are toxic and if it is sarcoidosis would do nothing to help me. So--I wait.

Monday, October 15, 2007

Rochester Again

We are here. I see the neuro-opthamalogist at 7:30 a.m. Let you know how it goes. Chas.

Tuesday, October 9, 2007

I'm OK

I got a lot of phone calls yesterday concerned because I haven't posted. I'm OK. The end of last week was kinda rough, but this week hasn't been too bad. I get up and shower. Rest. put on my clothes. Rest. make the bed. Rest. Eat breakffast. on and so forth. In short, it takes me all day to do nothing. If it were not for the fatigue, headaches, dizzyness and blurred vision--I'd be bored. but being sick takes all my time.

In short, nothing has changed lately. I am just waiting to go back to Mayo.

The reason I haven't blogged all week is that my wi-fi is down. I have to go to Heine-Bros to blog

Don't have any news. I go to Mayo next week for another round of appointments, tests, etc. With any luck, I will know more then.

Wednesday, October 3, 2007

Back in Town

My last post from Rochester didn't post till today. Sorry about that.

We got back to Louisville late Saturday. We drove all the way through. I have been exhausted since our return and haven't done a great deal.

My father in law has returned to Alabama. Katherine has returned to work.

No news. I don't really expect there to be any news until I get back in Mayo the week of the 16th. If, however, there is any news. I will let you know.

Last Posting from Rochester: Friday 8:00 p.m.

Round One is over. We are coming home. My next appointment is October 16.

After lunch on Friday we continued to have no luck in Neuro-opthamamology. Finally, we had to leave for my Lumbar Puncture. After the Lumbar Puncture, I had to lay flat for the rest of the evening.

While I was having my LP, however, my wife left "supportive-wife" role and went into lawyer mode. When I emerged from the LP, all my appointments had been rescheduled so that they were clustered together and so that I would no longer have to wait in waiting rooms for the "first available opening."

My next trip will be more sane. We are both a little worn out from the 8 hours of sitting in Nuerology before seeing a doc and 10 hours in neuro-opthamalogy without ever seeing a doc. When they told us that we would have to do more of the same, my wife could take it no more. So, bottom line, I have appointments and a schedule and no more endless waits.

We will probably leave Louisville on October 14 to drive back (flying is so expensive), spend the night in route and then be in Rochester the night of the 15th.

I will blog more when I get back to Louisville.