Oh, boy!

Well, I did some research and found another neurologist with privileges at my favorite hospital, nearby office and no black marks on his record (per State Board of Healing Arts). I called and explained to the receptionist that I was switching neurologists and wanted to get in as soon as possible. When I explained why I was switching, she said "Oooo. Ok." and found an appointment for me on 09 Feb. It's another week, but at least I have a set time. Now I just have to get all the test results and stuff that does exist over to the new doctor before my appointment. I've left a message for my primary doctor as I'm sure he'll do what he can to get info to the new neurologist.

You know, my doctor had asked my opinion of the first neurologist yesterday when I was talking with him. I told him, "He's nice enough, but he really doesn't seem all that concerned about the pain I'm in." My doctor said that perhaps the neurologist doesn't have good people skills. Well, that may be true, but why does the nurse sound all pissy when I call? I get the feeling that patients really keep her from doing something. What? I don't know.

Here's hoping the new neurologist is able to do more for me. It sucks to be off work, but unable to do much because of the pain. When I went to the doctor's office yesterday, it was only the 2nd time I've driven in 6 weeks or so. Both the trips involved no highways or major traffic, but my head was excruciatingly painful by the time I got home. No way I could drive in traffic or on a highway! So, I'll get myself to nearby locations (new neurologist is just across the highway, by the hospital), but leave the driving to others for longer routes.

Happy Thursday!

Hmmmmmm

Ok, so here's what's happened:

Yesterday afternoon, I went by my primary care doctor's office to drop off new disability leave paperwork to be completed. The doctor took me back to one of the rooms to review what was going on. I updated him on the latest wait - for blood test results - and he asked where I had the blood drawn. It was at a lab that's also the lab company they have on site. So, he went and asked the lab tech if she could check on results from my tests. She did what was necessary, discovered the results were complete (as of yesterday), and they actually faxed the results to my primary doctor within minutes. She said they were also faxing the results to the neurologist's office. The doctor looked over the results, said nothing jumped out at him, but that the sed rate was still elevated. ????

I told him that the neurologist's nurse had told me before that the sed rate was complete and it was normal. My doctor said, "No. It's elevated." ????

He explained that the elevated sed rate indicates only that there is some type of inflammation in my system, but does not diagnose anything else. Other tests have to be done to determine the specifics. When I told him that I had received the denial notice for the CT-A based on the fact that the head MRI was "normal" he was amazed. He went back to the MRI report where it very specifically stated that the result was "abnormal" with unknown white areas in the brain tissue and a cyst in the left sinus. I'll be contacting the insurance company today. But why had the neurologist's office submitted paperwork for approval indicating the MRI was normal?????

So, yesterday afternoon I gave the neurologist a chance to look over the blood test results. He never called This morning, I called and when the nurse called me back, she said that the results were not received yet!!! Weird, as I was looking at a copy of the results at the time. I don't know what's going on with the neurologist, but I'm going to find another one. I have lost all faith in this one. At least I can show up with my CT & MRI results, along with 2 rounds of blood tests, for the new doctor!

So, now I have a headache (figurative) to go with the headache (literal) I already have. When I have more information, I'll update everyone.

Here we go again

So far, no change in how I feel and no further word from the doctors. I'll be calling again today. You'd think they'd just call me every day so I wouldn't call all the time!

So far, I'm evading most of the cold symptoms - lots of fluids are keeping the phlegm moving. I just feel rather washed out and sluggish. Here's hoping that's the worst it gets.

Nothing going on here at all. Being off work isn't much fun when you really can't do anything.

Have a good day, everyone!

SSDD

Same stuff, different day. And now I think I'm coming down with a cold or something. No more calls from doctors yet.

Fed up!

I AM FED UP WITH HAVING THIS HEADACHE! IT'S GOTTEN REALLY BAD AGAIN TODAY. JUST MOVING MY EYES ACTUALLY HURTS.

Sorry, had to vent.

g'night

Monday, already??

I'm never going to figure out how to sleep with this headache. I either can't sleep at all or I sleep for hours and hours and can't really get ambitious enough to get out of bed. Today it was almost 11:00 a.m. before I woke up, and then only because the neurologist's nurse called! She explained that they're still waiting on most of the results simply because the tests take a lot of time to complete. The only results they got back were for the SED rate, which was normal. (The SED rate test can reveal inflammatory activity in your body, based on how quickly red blood cells settle in a test tube). It's not a stand-alone test, but just a piece of the puzzle. So, at least the results have started coming in.

Meanwhile, the headache is still hanging around. It's now covering a larger area rather than a small localized area, but I seem to be more sensitive to too much activity/noise. I mute the tv most of the time when I'm alone. I also have earplugs I use frequently. Right now, the pain is above my eyes, across the entire forehead and back to my ears.

Nothing else going on here. Have a wonderful week!

Early morning

Hey! Is anyone awake out there?? I've been mostly awake since about 1:30 a.m. but got out of bed about 6:15....I went to bed about 10:30 p.m. so that doesn't make for much sleep. The pain just kept escalating throughout the day and evening yesterday, and my head just hurt too much to sleep. I'd doze off but then I'd be awke shortly there after. I have a feeling I'll be falling asleep during the day today. Again. Bobby's fighting off a cold and yesterday we both ended up taking naps in our chairs! At least we were wide awake by the time the US-Sweden game started.

We did leave the house yesterday afternoon, though. We went to eat at Longhorn. We both had the parmesan-crusted steak they've been advertising and it was fantastic! The steaks were covered in a parmesan/garlic mixture....lots of garlic! Garlic lovers that we are, it worked out just great. We went and ate in the middle of the afternoon so it wouldn't be crowded and noisy.

At least the 24 Hours of Daytona are on...at least there's something I can put on the tv that doesn't require sound!

That's it for me.

No news is not good news

Ok, I actually got a call back from the neurologist's office. Unfortunately, it was only to tell me they still did not have the results. His usual nurse was not in and the person covering for her did not seem to know what to do. She said that the nurse would have to look into it on Monday!! So, once again, I'm just hanging around with no information.

Headache pain is staying fairly steady now. Too bad it's at a level that's just this side of intolerable. It also hurts over a larger area more frequently, rather than being kind of a localized pain.

That's all that's happening. Nothing.

Still waiting

I guess the neurologist didn't get test results back yet...I'm still waiting to hear from him. If I don't hear by noon, I'll be calling back. After all, the lab tech said the results would probably be to the doctor by Wednesday!

Headache was bad all day yesterday and it seems to have picked up right where it left off. I have the tv on so I can watch news, but it'll probably be turned back off soon. I didn't turn it on at all yesterday and even used earplugs to try and reduce the noise. Hopefully I can leave the earplugs out today, but something tells me that isn't going to happen.

More later, if I hear anything.

Wow!

I actually got a call back from the neurologist! However, it was just to tell me the lab results have not been received yet. Once they're in, the nurse promised to call me.

Today's Thursday, right?

Ok. I didn't hear from the neurologist yesterday about blood test results. Therefore, I've already called and left a message for them to call me. (They have a totally automated phone system...only get a live person if it's an emergency). Here's hoping they call me back SOON.

The headache was really intense and more widespread yesterday afternoon and evening. I ended up using earplugs to block noise, which seemed to help keep the headache from worsening. Of course, it made conversation difficult! The pain's not as bad right now, but I've noticed the pain seems to increase steadily throughout the day now. 30mg of that med doesn't seem to make any difference whatsoever.

I'll let y'all know when I hear about the results.

Yes, I'm still here

I mean, where else would I be? It's hard to go anywhere when Diablo's on my lap holding me down! Headache's the same old thing. Nothing exciting going on. Hopefully, I'll hear from the neurologist today or tomorrow with the blood test results. No word yet.

Last night I had the jitters and my heart was racing like I had drank one of those energy drinks. I have no idea why and it's not going on right now. Maybe that one (1!) Mountain Dew I drank over the course of 12 hours set me off??? I drank nothing but water otherwise.

MLS preseason training started yesterday. Yay! That means the season is just around the corner. Of course, if this headache thing isn't resolved, I don't know how many games I'll go to since the noise level is quite high. Here's hoping that we figure something out. Soon.

Nothing else going on here.

Inauguration Day!

Sorry I didn't post anything earlier, but I was watching the inauguration. It's one of those days that makes me even prouder to be an American...being reminded of the peaceful transfer of power. All I can say is, "God be with you, President Obama!"

I went to the lab yesterday and had the blood drawn per the neurologist's orders. The lab claims the doctor will have the result sometime on Wednesday. Meanwhile, I've upped the Nortryptiline to 30mg/day as of last night. We'll see if THAT makes any difference. I'm not holding my breath, though. Not since I woke up with a strong, localized headache pain today, even after plenty of sleep.

I am just so tired of this headache and the inability to concentrate as I did before. I'm getting completely frustrated and irritated/irritable!

Ok, President Obama has signed his Cabinet nominations, so I'm going to go find some food now.

It's so nice to be home!

No matter where you go or what you do, it's always so good to get back home. I've discovered that the more or less "controlled" environment at home is what's keeping me sane. After being out amongst people in public and then at someone else's home, I discovered that the headache hurt much more all the time. I'm assuming it's mainly due to elevated noise levels, but I also think just more physical activity made the headache worse. Walking around the exhibits at the NSCAA convention caused my headache to steadily get worse. It wasn't exceptionally loud in there, so I think some of the pain increase was simply due to not being still.

Ok, doctor update....in the mail when we got home, there was an envelope from the neurologist's office. Inside was a prescription form indicating some blood tests to be done. No letter, note or anything else. I guess I just need to go get the blood drawn at one of the labs around here. For those who are interested, the tests ordered are: Anticardiolipin antibody ANCA, RPR and ESR. I think they're the same tests I had done last month. They're all tests to either rule out specific autoimmune diseases or to confirm them. I'll get that taken care of later today. Meanwhile, the 20mg dose of the new med had no effect this past week. Tonight the dosage goes up to 30mg. Yay.

I have another story to tell about this past weekend, but it's going to have to wait. Headache is getting worse already.

Home!

Just a quick note to let everyone know we made it home safely. I'll write an update later today or tomorrow with more info.

Hello from Wood River

Well, I didn't feel well enough to go out to breakfast this morning. I didn't get much sleep (headache/different bed combo) so I couldn't get up early enough this morning. I'll have some toast in a few minutes.

The headache didn't lessen overnight like it often does, so I'm starting the day with the headache firmly in place. No real plans for anything except going out for dinner tonight (I think). Just hanging out with family.

If anything exciting happens, I'll be sure to let you know.

Friday?? Right??

I just have a hard time keeping track of which day it is...a bad side effect of not working.

Anyway, I've survived the MLS Superdraft. Barely. We got to St. Louis yesterday and went to the convention center shortly before the doors opened for the draft. Our team owners had insured that the KC Wizards fans would have seats in the first few rows, so that was great! Several other small groups of KCW fans had also shown up, so we had people to talk with. I was doing fine noise-wise until the draft got under way. Then, in addition to video segments which would come on at high volume, the supporters group from St. Louis (they don't have a team, but they're trying to get one in MLS) would begin their chanting/singing. Loudly, as any decent supporters' group should! Then, they had a drum. Normally, I love the fact that supporters' clubs use drums and anything else to make noise. This time, not such a good thing for me. I managed to stay in the room for the duration of the first round, but my head felt like it was going to explode by then. I spent the 2nd, 3rd and 4th rounds of the draft in a chair in the space outside the ballroom. A bit noisy, but definitely much more bearable for me.

We went to the hotel and then out to eat (it was REALLY cold walking around downtown St. Louis!). My head still hurt, but it was down to a level where I could function reasonably well.

After we got up this morning, we went back to the convention center to tour all the cool soccer-related stuff in the exhibition hall. There are a lot of really intriguing soccer things out there! We learned some things, saw some old friends and got some trinkets. For an exhibition hall, it wasn't terribly noisy, but after about an hour or so, I had to sit down. My head was beginning to hurt worse gradually and I was feeling a bit weak and woozy. So, I spent most of the rest of the time in the nice comfy chair I located while Bobby looked through the rest of the exhibits. He bought some soccer scarves and we were on our way out.

So, we're now at Bobby's parents' house. I have some pain, but it's lessened considerable since we arrived here. I was able to lay down and nap for about an hour, which helped. We then had a great fried chicken dinner (thanks, Jean!) and then I decided to log on and update this (Jean told me to, too).

I had about as much fun as I could the last couple of days, but the severity of the pain when I was around noise and activity just really brought home how bad the headache is. At home in a more or less controlled environment, there isn't often a big swing in the level of pain. Boy, there sure is a big swing when I'm out in the real world!

Ok. Gotta go now. Dishwasher's going and I'm too close to it here. I'll probably write more tomorrow.

Love to everyone!

St. Louis

Bobby & I are leaving Thursday morning to head to St. Louis. We'll be going to the NSCAA Convention, mainly to attend the MLS draft and, perhaps, the Women's League draft. We also plan on going through the exhibition area just to check out new soccer stuff. So, I may not be updating this blog regularly this weekend. We're doing soccer stuff Thursday & Friday (staying in a downtown hotel), then going over to Bobby's mom's house for the rest of the weekend.

I heard nothing from doctors' offices on Wednesday. At least my cell phone works in STL!

Later. Some time.

Wondering Wednesday

I'm wondering if this headache is ever going away.

I'm wondering if we'll find out what's causing the headache.

I'm wondering if my doctor's battle with the insurance company will result in my getting a CTA test.

I'm wondering if his battle will also result in the head MRI payment being approved (the bill is over $5000).

I'm wondering what it's like to be able to concentrate for more than a few minutes at a time.

I'm wondering if I'll be able to "hang" at the MLS draft in St. Louis, or if I'll end up having to go to the hotel for some quiet time.

Just one of those days, ya know?

Gotta love insurance companies, right?

Well, the neurologist's nurse called me this morning and said that my insurance company had denied the request for the CTA! She said the doctor would review my chart/blood tests and see what the next step should be. They'll get back to me.

So, Bobby had taken a 1/2 day off work today (it's slow at work), and we were headed to Target, which is across from my primary care doctor's office. I had Bobby go there and we went inside where I just asked if I could talk to the nurse for a minute. The nurse came out shortly and I informed her of what the neurologist had said (worried about diabetes later in my life) and that the insurance company had denied the authorization for the CTA test. She looked shocked. At that point, I asked if I could go back and use their scale (to find out about that possible mysterious 20 pound loss). She took me on back and while I used the scale (without the 20 pound loss, mind you!) the doctor saw me and came over to ask what was going on with me as he had not yet received a report from the neurologist. I explained what was going on and about the denied CTA test, as well as the fact that the insurance company had denied payment for the head MRI I had done last month. Both he and the nurse looked a bit angry and the doctor told me to get the insurance information to him and he'll call and find out what's going on.

After our outing to Target and a late lunch at Long John Silver's, we came home and I looked up the claim/authorization request numbers and other information and left a message for my primary doctor's nurse.

I still have not heard back from the neurologist about our plan going forward.

Meanwhile, my head still hurts. Fortunately, it hasn't been terrible today.