What is in the Future?

No one can really say....I mean this is a broad subject, right? I am looking into the near future and hope to see a pool in the backyard. Will it happen? Who knows??

Also, I am looking a few weeks down the road to the next neurologist visit and think she will want to have another set of MRI's done as I have fallen 2 times in the past month, but who knows if it will show anything new or better/different.

I try to remember that I need to live for today and enjoy it while I can, but in our short-sightedness, as humans, that can often be hard to do. God designed us knowing this, but also gave us a mond to be able to choose what to do with our time here on earth. I just pray He impresses his will on me enough that I do what he wants and in the end, that is all I can ask for....

Neuropsych Cognitive Evaluation

The doctors finally got approval to do this through the insurance at the in-network price. He was talking to me and saying how much the insurance usually allows.....$1500-$1700 to pay for these tests.....YIKES, what the heck is my part going to end up being? I think this will be my last test until I have MRI's done again. Hopefully I can get this one done before the 14th when I go back to see the neuro.

EEG Complete

I went and had the EEG done this morning. What a strange little test that is!! She hooked 23 electrodes up to my head after scrubbing the 23 spots with liquid sand paper. Then I had to lay on the bed and the test started. First she had me close my eyes and lay there for a minute, then she asked a couple of easy questions, then she flashed a strobe light at my eyes (while they are closed) for about 3 minutes. It was strange because you "see" red and green colors and some weird patterns caused by the strobing whinle you eyes are closed. Next she had me breathe rapidly to hyperventilate as she monitored my brain and heart. Then she has me relax for 10 minutes as it read the brain waves, aksed me a few simple questions again, and then the test was done. I will not know anything on this test until I go to the neuro on the 14th.

2 weeks and 2.....

Falls for me. UGGGHHHHHHH - what is next????????

This time I was at my mom's house eating dinner (mom, hubby and stepdad sitting were there). I was getting up to go into the kitchen, and the left foot (I thought was going the right way) was not. Some how I tried to walk on the top side of my left foot or something like that and the right foot kept coming as I was standing up and the chair slide out from under me. The bar we were eating at caught me, thank goodness, or I would have been flat out on my face sprawed out on the kitchen floor!!

My legs seem to not be getting all the messages from above when I try to get out of chairs for some reason. I think my lower half has got a short in the wiring from the upper half.....this is getting frustrating. I think I may have broken my little toe on the left foot and bruised the rest of the foot.

Syringe Disposal

Since I have been taking shots every other day, I have built up a collection of used needles. I have sharps containers like the have at doctor offices just smaller for the home. The nurse that came out to do my training told me that by Texas law, all I have to do is to duct tape the top of the container when it reaches the fill line and toss it in the trash. I still can't believe this.......I am having a hard time with the idea of doing this. First of all, these things are NOT biodegradeable and will be in this container FOREVER (unless it gets opened) second, I can't imagine there is no problem with people who are looking for needles to use......they would have a hayday at the dump since we can just toss them in the trash, thirdly, why can't a hospital, pharmacy or doctor office allow for drop off of these items to be disposed of the way they should be??? I just have issue with this on so many levels and do not know what I am going to do. I think I will make some calls myself this week and see what can be done about them.

Uneventful I guess

is best to explain the past week. Nothing has really been going on here so nothing much to report. I go Monday to have an EEG done, where they are testing the brain waves to see damage done by the lesions on the brain. Guess more later......

More Tests Done

Well, I went to Baylor Irving today and had the Evoked Potential tests.

The visual test is about 10 minutes long looking at a small TV screen with electrodes on the forehead, and a couple places on the back of the head. They scrub each spot with "liquid sandpaper" so the spot is good for connectivity. The you sit there and stare at a spot on the middle of the screen while a checkerboard pattern flashes back and forth. They are recording the brain waves to see how fast you transmit the signal.

The hearing test was about 10 minutes on each ear. You lay down and they put headphones on you after scrubbing more spots for electrodes. There is static in one ear while the other has a series of clicks, much like the sound you hear in an MRI (of you have had one). It plays on for the whole time and they record how you perceive the sounds. This is done on the other side as well.

The next two tests were somasensory where they test you from the wrists to the brain and the ankles to the brain. They put electrodes on each wrist and one on the forearm and stimulate the nerves. It makes the thumb twitch while the test goes on for about 10 minutes on each hand. They put some electrodes on each ankle and behind the knees, and at the base of the neck and on the back to see how the nerves transmit to the brain from the lower half of the body.

All in all it took about 1.5 hours. The tech said in normally took about 3 hours, but we just got it done!! I do not know how I did, the tech said I did wonderful, but I think that was in regards to the process as opposed to the actual tests. I probably will not know how the scores were until the 14th of August when I go to the neuro again.

Evoked what???

Evoked potentials........the tests I will be having in the morning at the Baylor Hospital in Irving. Here is some info from Web MD:

Evoked potential test for multiple sclerosis

An evoked potential test measures the time it takes for nerves to respond to stimulation. The size of the response is also measured. Nerves from different areas of the body may be tested. Types of responses are:

Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern.

Auditory brain stem evoked response or potential (ABER or ABEP), which is when hearing is stimulated by listening to a test tone.

Somatosensory evoked response or potential (SSER or SSEP), which is when the nerves of the arms and legs are stimulated by an electrical pulse.

Each type of response is recorded from brain waves by using electrodes taped to the head. The visual evoked response (VER) is the most commonly used evoked potential test in the diagnosis of multiple sclerosis (MS).

Conducting gel and electrodes are applied to the scalp. The location will depend on the type of response being recorded. For example, when VERs are recorded, the electrodes are applied to the rear (occipital region) of the scalp over the brain areas that register visual stimuli.
Stimuli are delivered:
For VER by a strobe light or a screen with a checkerboard pattern.
For ABER by clicking noises or a tone sent through earphones.
For SSER by an electrical pulse at the wrist or knee. This pulse is a mild electrical shock.
Responses from the electrodes are recorded. The time between the stimulation and the response is called the latency, which indicates the speed at which the nerves pass a signal.

Why It Is Done:
This test may be used when MS is suspected and a neurological examination alone does not provide enough evidence.
For a clear diagnosis of MS, the doctor has to find evidence that multiple parts of the central nervous system are affected. When there are symptoms clearly caused by MS lesions of the spine but no visual symptoms, the visual response may be tested anyway. Abnormal results in such cases mean that there are also areas of damage (MS lesions) on the brain.
Results
Findings of this test may include the following;
Normal
The time between the stimulation and the nerve's response is within the normal range.
Abnormal
Some people who are free from symptoms in the nerve area tested will still have abnormal responses in that area. Abnormal response times can also be associated with other neurological diseases or with damaged optic nerves and eyes.

My Meds.....

This is a photo of the shot set up that I give myself every other day. It includes the vial of powder, the syringe and needle, and 2 alcohol pads. It is called Betaseron, and is considered a "Disease Modifying Drug". It is supposed to help with the progression of the MS lesions. I was told that in 1 year I should not seen any more lesions on MRI and a possible reduction of the existing ones if I respond to the medication.













This is a shot of my daily pills.

The ones on the left are the morning dose, and the ones on the right are the night time dose. There are a couple meds that are not in the shot as they are "as needed". I take 2 different antibiotics for Lyme, an antidepressant -(guess what for??), Synthroid for Hypothyroidism, Lipitor for high cholesterol, Grape Seed Extract, Magtabs for Magnesium, probiotics for digestive help, multi-vitamins, and as needed, a muscle relaxer and sleeping pill. I recently stopped taking 4 other supplements and have 1 prescription I am waiting on to be filled.

Medication/Insurance Costs

Until you experience a trauma, injury, or major illness, I guess most people do not think of the ramifications of not having medical or prescription insurance. It is really amazing what insurance will cover and what they fight you on. Right now I am dealing with trying to get a nerve med that I have been on in large doses in the past, and now they are fighting with me over a very small dosage and withholding the medicine until they get the "proper prior authorization" validated with the doctor who wrote the freaking presccription. Didn't she give that "prior authorization" by writing the dang prescription?? I mean c'mon really???? I just do not understand it......they will send my MAJOR meds out with no questions asked, and overnight them free...(well I am sure it is built into the cost).....which I just found out(whoa Nelly) is $2000 a month they are charging the insurance....I only have to pay $50.00(looks like every 3 months). I am fortunate!! Now I know I gripe about prices and the cost of these things mainly becuase it is a shock to the system, and pocketbook, but I know how blessed I am to even have the insurance I do. I cannot fathom the thought of living without it.....what would we do?? I know there are places that will help with the cost of prescriptions for those who need it, but if you are in between those areas of can't qualify and over qualified, it has to be soooooo hard. It is just someting that makes me angry these days....I feel so sorry for those who have to deal with this situation day in and day out!!!

MRA Today

I had the MRA today which is much like an MRI. They are looking at the blood vessels in the brain to see how things are moving in there. It only lasted about 5 minutes and I was done. I have to go in for more blood work tomorrow and see how my liver is doing. Maybe the Synthroid will be doing something by now and the Thyroid levels will be starting to come down.

Falling over.....

in a crowd is not fun!! I was at the neighbor's house at a pool party, and I was trying to get out of a canvas camping chair and fell out of the chair, well, the chair came with me as I fell to the ground. I was trying to balance and stand, and the legs were not in synch with the upper half of the body, and there you go. I was almost flat on my face, but thanks to the knees, I only did a partial plant. This is the first time I have really had something like this happen where I felt my body being so weak and not being able to do much about it. This just sent me into a tail spin last night and I lost it all!! I guess I finally hit a low for myself and had an emotional break down and freaked a few people out in the process.

All day today I have had a hard time getting up and out of any chairs in the house. I just feel very weak in the legs and in my lower back. Hopefully things will get better over the next few days. I have also been noticing alot more tremors in my hands the past few days. Typing has become a little harder, and takes more editing because the tremors tend to cause me to put extra letters in or random ones that were not needed. I am constantly having to go back and change things due to this!! What is this MonSter doing to me??

Happy Fourth

We spent most of the day at home. I had a horrible headache and Ken has been dealing with a hurt neck. We finally got moving about 5pm and went to a friend's house for dinner and then off to fireworks. The kids played, we all ate and played some dominoes. Around 9 we headed out to go watch Frisco's fireworks. It was a pretty good show. When we came home, we had a pretty good show going on in the neighborhood. I can't believe how many people were setting them off in our area last night. It was almost as good of a show as the Frisco one!! All in all it was a good day! Going nextdoor for a BBQ at the neighbor's today - they just had a pool put in.

Good grief.....

I think I am in the anger stage of grief with this whole MS thing. I have been doing pretty good, I post on a forum of MSer's and get most of it out, and then I have this blog. Today has been rough though. I felt horrible all day, and was in bed most of the day.....then I got a call from the new neuro's office. Matt, her PA, called me about my blood work from last week. He told me my thyroid was up to 9.526 which is higher than it was before.....and that my ALT liver function is extremely high at 88 and the normal range is not supposed to be over 40. Of course I get this info on a holiday weekend, so I cannot talk to anyone (Dr.) about it. I looked back at my bloodwork from 5/21/08 and the ALT level was 23, so it was good then. I am pretty sure the Betaseron is what is causing my levels to be elevated. I just received a 3 month supply of the medicine today delivered by FedEx. I can just see that the doctor will tell me that I have to switch meds now that I have received this shipment. You cannot return it once it is shipped to you......guess I could EBay it......hahahaha

Then I ask him about the Thyroid tests that my other doc requested on the lab form, and he said it was not there. I guess they did not read the whole form and did not run the tests, and the techs even took extra blood to be sure and have enough. It was trying to as they popped one vein, stuck me in 2 other spots and could not get a vein, then finally did, and it stopped bleeding half way through, so they had to go to another spot. Finally they got enough blood.....I hate going to do blood work as it is always a pain for me. Literally! Either they do not listen as I try to warn them about my small veins, or they suck as a phlebotomist, and dig on me. Not fun!!!

Anyway, I just feel like every time I turn around there is something new going on, kinda like my body has turned against itself!! I feel pissed, ticked, angry, mad, upset, shocked, freaked, did I say mad, or angry??? What the heck is going on??????? I think I have been holding in a lot of stuff about it, as this all seems to have been going so fast and I have just been rolling with it. Today I feel like crying and screaming....but I do not want to freak anyone out. Sometimes being the strong one is not such a good thing......

Do not know....

when the fatigue is going to hit......it sucks! I feel like a large piece of concrete is laying on top of me today. I am so freaking tired I hardly can move. Ughhhhh

My LLMD is treating my thyroid issue and told me that a low body temp is one of the symptoms. I stay about 97 degrees all the time now. No wonder why I am always under a blanket!! But I still sweat like I am running a marathon, and will just be sitting still. What a strange thing the thyroid is.......it really affects your whole body!! Anyway, he said we will look and see how I am doing in about 2 months so the meds can start to work. If my body temp is not normal then we will have to up the amount of thyroid medicine and wait some more. It is such a game you have to play with the thyroid meds. My mom has been on them for years now and they are adjusting her's again.

What a blessing.....

to be able to touch someone spiritually and emotionally by saying a few words. I told the lady at church this evening that I would not be able to make it to Africa. She was saddened for me, as we have talked about it several times. In the same breath I was able to tell her that the money I had already earned through donation, would be given to her. She started to cry......and gave me a huge hug. That was worth it! As much as it saddened me to have to back out of the trip, it was awesome to share the blessings that others have shared with me through donating money for me to go on the trip.