03 November 2009

And the journey continues....

Well, we’ve come to a new point in the journey.

Things have been relatively quiet since the last update. With the exception of a 4 or 5 day exacerbation in September and a 2 or 3 day one in October, there has been very little to report. In both of these cases, the exacerbation presented with a new symptom.

We had our follow-up with the Neurologist on October 20. Dr. Boop was concerned that there was a new symptom in the previous two exacerbations. Events such as that typically reflect new lesions and make Multiple Sclerosis a more likely clinical diagnosis. We briefly discussed long-term treatment options and he armed us with a considerable amount of information (inclusive of a DVD that was a veritable “cheese-feast”). Dr. Boop also recommended that we proceed with a new MRI Scan.

There’s a saga that I should insert here that occurred in the process of getting the insurance company to approve the MRI. I’ll spare you all the insanity, but will make this general observation: Insurance companies have absolutely NO BUSINESS making medical decisions. The MRI was approved after an appeal letter from Dr. Boop.

A side note to the insurance saga (and an element of it that is truly too good not to share), the denial letter both APPROVED and DENIED the MRI in the SAME PARAGRAPH of the SAME LETTER – in back-to-back sentences. Seriously. I can’t make this stuff up.

At any rate, the MRI was conducted on 11/2. Dr. Boop contacted me on 11/3 with the results of the MRI. There were two lesions. These are the same two lesions that existed on the June scan, and there were no new lesions.

However, over the past few days, I have been experiencing off-and-on issues with tremors and other symptoms – including another new symptom. This one is actually kinda cool, in that it is an issue where I get a tingling in my spine and out toward my arms. It’s like when you get a cold shiver. This started yesterday morning. I can force this symptom by turning my head or dropping my chin, which is a clinical test called Lehrmitte’s Sign.

While on the phone with Dr. Boop, I mentioned this issue. He stated that even though the MRI was unchanged, the presence of this new symptom and the earlier new symptom confirms that this is Multiple Sclerosis. He further said that Multiple Sclerosis is the only real explanation for the collection of symptoms, and their appearance/disappearance/reappearance/etc.

What’s next? Based on the continued issues with and the length of this particular exacerbation, Dr. Boop has written a prescription for Prednisone. This is a steroid treatment that will help alleviate the on-going issues with the exacerbation. Additionally, we are beginning the process to get insurance approval (please refer to an earlier paragraph for my opinion on that statement) for Copaxone, which is a disease modifying treatment (daily injection) that works to minimize the frequency of and impact of future exacerbations.

For those of you wanting to know what directions we need/want prayers, good thoughts, karma, etc:

  • Wisdom for Dr. Boop and us to make wise decisions as we go forward in this process
  • Insurance approval for Copaxone, which is an extraordinarily expensive ($30k/annually) drug if you don’t have insurance. With our insurance, we will be able to get this treatment for about $500/year, so we need the insurance company to approve the drug
  • Steph and I to have wisdom/understanding/etc for explaining this to Emily (and later to Caleb). Em is, as you all know, one smart kid, so this should be easy, but never something that you WANT to have to do. So, maybe the direction here is more for us to have the strength/emotional stamina/etc to explain.
  • Strength (physical/emotional/etc) for Steph as we continue on this journey. She’s been unbelievable through this and I am so incredibly thankful to have her by my side.

We appreciate all that you have all done for us. Your kind words, prayers, positive thoughts, offers of help have been overwhelming to us. We find ourselves in a fantastic position to be surrounded by so many wonderful people.

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