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The Final Post
December 15th, 2008 by Chenell

I have too much to say to let Chris’ last post really be the last post, typical woman, right? :)

It is unfortunate that we are going to have to stop updating this website because Standard Insurance is using it against us on Chris’ long-term disability claim. I agree the HiCy procedure did work. Chris did get better but the part they don’t understand is that Chris’ disability level is not even close to where he was when he had to stop working. Chris tried to get his employer to make concessions so that he could keep on working, mainly from home, and they did not want to work with him. The past 2 years he has been at home his condition has declined rapidly, especially in the months right before he went in for treatment. Yes, HiCy did work, it leveled out his disability and actually did improve some things, but again he is at no point where he would even be able to perform a part-time job. He has a hard enough time doing household chores. I cannot imagine him being able to keep a job for any length of time given his condition. It is very unfortunate that Standard Insurance came to this site for information before contacting us or any of Chris’ doctors.

As some of you may have heard, Chris had one active lesion on his most recent brain MRI last month (see below). We saw it as we were leaving the MRI room, clear as day on one of the films – a bright white speck about the size of a pencil eraser. At first, we were devastated – HiCy was our last ditch hope, so now what? Retreat with HiCy? We went back to JH on Dec 3rd for Chris’ 9 month follow-up appointment where they confirmed the active lesion but told us not to give up hope. Dr. Kerr told us that some people had popped off a lesion or two after HiCy but they cleared up on their own. We are optimistic that this will be the case with Chris as well.

 

Chris actually performed better than last time on the peg test; he had been working on improving the strength of his hands with exercisers and stress balls. He didn’t do as well on the math test, mainly because he got behind and was never able to get caught up. Hell, even I have a hard time keeping up with that awful math test! Dr. Hammond had Chris close his eyes and had to tell him which direction he was moving his big toe – up or down. Chris got 100% on both feet for that test! He actually has improved in that aspect. Chris is now able to use his toes for balance where before he couldn’t feel them!

Chris is going to continue to take his daily Copaxone injections. In addition, he asked Dr. Kerr if he could be put back on LDN, which he did fairly well with before he stopped taking it to get into the HiCy protocol. He has another MRI to be done in March to see where he is at. If he is stable we may just hold off on retreating him with HiCy. We are keeping other options open as well. There are many other promising treatments out there for MS. Come March Chris will be covered by Medicare and things may cost us a bit less to do, as of right now we are drowning in debt due to these medical bills. In our minds we have won. HiCy killed off the MS and actually let Chris improve. We can handle this now; it isn’t a steady and rapid decline of his ability anymore. Besides, lesions are not an accurate representation of disability. If he can have a lesion without the disability, we’ll take that!

Chris has also started on 4-aminopyridine to try to improve his spacticity and the transmission of nerve impulses. Other than some initial dizziness, the drug seems to be working well. The compounding pharmacist is going to make it next time so it is more of a time-released formula to help Chris with some of the side-affects, like dizziness.

I have to say, over the last few months Chris has been almost obsessed with reactivating or getting some other kind of major illness. I am a strong believer in mind over matter, if you can convince yourself you are sick, you will start experiencing symptoms even if you are not. (This guy tends to think along te same lines. Read his book, The Biology of Belief if you can.) I wish he could have just enjoyed the time he had while his MS was in remission instead of making himself worried sick. I guess you don’t really appreciate things until they are gone. I think Chris is kicking himself now, he could have enjoyed the past few months a lot more if he wasn’t constantly worrying.

Chris and I remain hopeful and optimistic of our future. If some of the best Doctors in the country (and the world) think we should be I am not one to argue. We will keep the faith, because we know that God can perform miracles every day, even where medical science fails.

I just want to say one more thing: thank you all! The outpouring of encouragement, prayers, and kind words we have received in the course of the year has been what has kept us going through these tough times. Thank you again so much! Please keep us in your thoughts and prayers. I ask you to please join me in this prayer for Chris: (taken and modified from allaboutprayer.org)

“Heavenly Father, You are intimately aware of the struggle Chris is experiencing — the pain and the despair. You know the desire of our hearts for him to be healed of this illness. I ask now for Your healing touch. I know that You are able and that just like in Bible times, You can heal us.

“I also understand that You will chose what is best for us. I pray that through this trial, we will draw close to You — that You will be our comfort and strength. I pray that ultimately, whatever happens, You will be glorified through us. I pray this in Jesus’ name, amen.”

Again, thank you all for your support and kind words!!

Chenell

P.S. After much debate, I am going to keep the “Had” on the website. You may think it’s false advertising or that it’s crazy but the Bible states that we shall call things as how we want them to be, not as how they are. I am sorry I am not good enough to remember what book that quote came from.