Hold the Phone...

More changes!

Because of my delicious, new pain, Dr. Rick said to hold off on switching from gabapentin to Lyrica. He wants to wait until I am more stable (I did not even laugh when he said it). He gave me a new medication called Trileptal. Another seizure medication, which often helps with trigeminal nerve pain.

I either have trigeminal nerve pain or "ice pick headache." He is not sure which, but he is going with trigeminal nerve pain meds to see how I respond. I began taking Trileptal today. It is the kind of drug you have to take everyday and build up a steady state with, not like the tramadol, where I can take more or less depending on how much pain I have.

Speaking of tramadol, Dr. Rick again reminded me to cut it to 25 mg. Ideally, he would like to see me off it, because I have quite a few drugs that can interact. Tramadol, gabapentin, Trileptal, and Ambien CR. And Vicodin, but I will not need to take that anymore, since I stopped the Avonex. Or I hope I will not need it again. It stinks at helping nerve pain, so probably not.

I have had a weird headache today, on the top of my head. The trigeminal nerve pain started in the afternoon, but then it got a little better. Maybe the Trileptal is already working? Whatever, I will take it.

So that is the bad news. The good news is that I will stay in the study! I know: How is that good news?

Basically, I have three options:
1. Continue in the study with the shots (which I know means Avonex, although technically it could be either Avonex or daclizumab.
2. Continue to be followed by the study, with the regular visits and labwork (all free). I could pursue any line of treatment I choose but would have to pay for the [pricey] MS drugs.
3. Leave the study altogether.

Option 1 is pretty much out. It would be nice to have free MS drugs (the shots), but free is not so great if they are not working. The only real advantage to option 3 would be not driving into the city every month if I were feeling okay and did not need to be seen. But I think the benefits of free visits when I need them (um, all the time) and free labwork outweighs that drawback. So I chose option 2.

I have not heard from the nurse yet about my next appointment, which should be next week. Oh, and I have not heard back from my internist's office about psychiatrist referrals. I guess I will add that to my to-do list for tomorrow (like I maintain a to-do list...).

Sensory-Friendly Clothing

With this horrible, burning pain, my clothing really hurts. I wonder if this is what kids with autism feel like when they complain that their clothing hurts. Many of them cannot stand seams or tags.

Seams are painful, and most textures are torturous. Any degree of pressure or binding is out. Thank goodness for my Life Is Good creamy shirts, which are extra soft. Pants are tough, because they all have seams. I do have one pair of dress pants with silk lining, so I have been wearing them, but they still create pressure lines. I bought new sweatpants, because I had nothing to wear around the house. One pair of thin pajamas do not hurt. And I had no jacket that did not hurt my shoulders, so I bought a new one--amazingly, I found a peacoat-cut sweatshirt. I never thought clothing could be this complicated!

So... I remembered that some kids I took care of many years ago had comfortable pajamas from a Scandinavian brand. After some googling, I found the name: hanna andersson. And they have women's pajamas with flatlock seams. Score!

Finding sensory-friendly clothing is hard and expensive. But with soft, comfortable clothing, my pain level is sometimes sub-suicidal. And so I close my eyes and hand over my credit card.

MRI Fail

Alright, so you know how I was saying that I learned that I need to have 3.0 Tesla MRIs? That means a stronger magnet. Well, I called to ask the strength of my previous MRIs. I remember that Dr. Gabby had sent me to the second place, AMR-C, for my spine w/contrast MRI, because she said its machine is better.

Wrong! Dr. Gabby, you lose.

-June, brain w/ and w/o contrast: 1.5T at ADV-C
-August, spine w/o contrast: 1.0T at ADV-C
-August, spine w/ contrast: 1.0T at AMR-C

One Tesla!! Come on!! I am paying $800 for an MRI that was not even strong enough to find MS lesions. How depressing.

Strangely, I am not depressed. Just frustrated.

However, I have reached my deductible for this year, so at least any future MRIs will be a 20% coinsurance. I think it will be around $250. Better than $800. So I want to have more MRIs before the end of the year, if I will need them.

I am going to speak with Dr. Rob about this on Tuesday and explain to him about the importance of magnet strength when it comes to MS lesions.

I can't believe these irresponsible neurologists let me waste my money AND based their clinical judgments on these worthless tests.

Ho. Ly. Crap.

The medical bills have begun to arrive. I can't believe this! $813 for one set of MRIs! $404 for CT and bloodwork! I haven't even received the bills from the other MRIs.

What really gets me is the the MRIs from that day were totally useless, I have learned, because they were on a 1T MRI machine. Probably too weak to find lesions.

And I knew I didn't need the CT that day. Somehow it's worse when you don't receive any benefit but still have to pay for it.

Well, so much for paying down the credit card debt I incurred by using that for food, gas, etc. so that I could put a downpayment on my condo. I guess it's just not in the cards for me to be in the black with money. Every time I get out of debt, something happens and I'm right back in.

As if MS weren't depressing enough...

Bad Day Becomes Good

This morning I was too tired to function and had to take a nap. Then I became human. So I'm not going to include the morning in my numbers, just how I felt during the afternoon and evening. I think I was so tired because I didn't sleep well... which I mentioned before.

Sensory:

-Pins and needles: 1

-Tingles: 3--I'm renaming this tingles, which is what I originally called the feeling. That radiology guy called it hypersensitivity. Going back to my word.

-Paresthesias: 1

-Numbness: 1

-Vision: 2--I haven't had anything this afternoon, but I'm including this since I did have floaters this morning for the first two hours after I got up.

Motor:

-Gait: 1--sooo much better!

-Sore muscles: 3 :)

-Fine motor: 3--had to interpret sign language tonight and struggled, but I'm not sure if it was my brain or my hands. Actually, maybe it was my brain.

-Weak muscles: 3

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 3

-Confusion: 1

General:

-Fatigue: 4 (but it was probably 8 this morning)

-Balance: 1

-Sleep: 7--still stressed out, but MUCH better this afternoon

-Bladder: 3

-Anxiety: 2 this afternoon, was 7 this morning

Great afternoon, right? That's what happens when I sleep what most people would call a good amount (7 hours), get up and sit in a chair for a few hours on the computer and videophone, take a nap for a couple of hours, get up and sit on the couch for a few hours, go to a restaurant (someone else driving), come back and sit around for a couple of hours more, and go out and interpret. Interpreting did make me tired, but honestly, less than two hours of work for the day? I should be feeling good! And I'm happy that I am now.

Resting helped with my anxiety, because I had a better perspective on things when I woke up. Things make more sense when you're not exhausted. And my new friends on the MS forum helped with my anxiety. Honestly, just hearing that most of them lead pretty much normal lives made me feel so much better. They do need to slow down and pace themselves sometimes. They need to rest more. They have a rough time during exacerbations, which they don't have many of if diagnosed early like me. But they walk and work, which are huge for me. I'm still worried about the cost of my medical care, but I am trying not to worry about it too much until I speak with my insurance company. It might turn out that I need to pay very little. You never know. My heavenly father knows what my needs are--I'm sure things will work out according to his plan.