Happy Friday….or not

I woke up this morning and had a message on my voice mail. After checking that and making the necessary return phone call, I sat down with my phone to make a FB post.

I actually tip tapped out a huge amount and realised, “this is no Facebook post, and you should make this a blog entry at this point.”

So I copied and pasted the whole shebang into an email to myself so that I could open up ye olde lappytoppe and do just that. Besides, it was getting quite long and I was a bit worried that my phone would somehow lose what I had already typed in some tragic Facebook accident.

So I turn on the ‘puter, open my email, and just for giggles see how many words I had already done on my phone.

896.

Yeah, definitely a blog post instead of a FB post. And here it is:

So, I have to say, I really, really appreciate my new neurologist. First of all, they called the hospital here in Flagstaff to order my MRI.

That doesn’t really sound like a big deal, but I can assure you it is THE FIRST time in 9 years that has EVER happened. I got to the point with the other place that I would have them give me the order in writing when I left their office for the one I would need in 6 months and just hold onto it till the time rolled around. And then I would have a huge fight with the radiology scheduler to actually GET an appointment because they aren’t used to a patient doing their own scheduling. But, it was the ONLY way I would ever actually have an MRI done.

I learned this the hard way.

I would go all the way to Phoenix for a follow up and the doc would just look at me like “huh, well, there is no reason for this appointment really since I can’t SEE your brain, let’s have you get an MRI and reschedule”.

By the way, they were always booked a minimum of 5 months out, so this wasn’t exactly a quick and easy thing.

So, kudos for an efficient office!

So, now for the not-great part of my story.

Some of you may know the struggle I went through from 2006–2009 with the many meds I was on. It seemed like none of the medicines for MS worked for me. I got progressively worse and worse. Even to the point of using a cane, to a walker, to a wheelchair at times.

I had, in less than a year and a half, from when I was first diagnosed, very quickly gotten 12 lesions. 10 in my noggin proper, and 2 high in my cervical spine.

My MS was ‘aggressive’ they said.

I think for me the most terrifying part was that for more than a year I couldn’t read. Well, more, I couldn’t comprehend what I was reading. I could read the words just fine, but I didn’t understand what they meant. I would real a paragraph in a book and go “what the heck did I just read?” It just didn’t make sense.

It would be like reading a sentence that said:

‘Refrigerator Italy perpendicular happy parliamentary jumping’

What??

So I would read it over and over and over and just get more confused.

Now, I have been reading for as long as I can remember. Books have always been everything to me. When I read, the images in my mind come to life with far greater clarity than any movie could ever hope to have. My creative mind sings with the happy at the worlds born when I read. They are in crystal clear vivid 3D. With smell-a-vision. And unicorns. And glitter, and rainbows, and bunny farts, and and and…

You get the gist, it was awesome.

And now, suddenly I couldn’t read.

I also lost an incredible amount of my vocabulary. I struggled to find words. I would fumble around and say something like “a long thing, in a park where 2 or 3 people can sit”.

And the person I would be talking with would go, “A bench?”

“Yes!! A bench!!!”, and then I would continue on till I came to the next word I couldn’t conjure.

Not only was this terrifying, but it was frustrating and horribly embarrassing.

I learned to cover this pretty well and just dumbed down my language so I didn’t look too terribly stupid.

In 2009 as a last ditch, hail-mary toss, my doc put me on a radical med called Tysabri, a once a month infusion that was a life changer for me. The results were incredible. Finally there was hope in what had quickly become a seriously bleak road.

When I first began the Tysabri they told me there was a risk of something called PML (Progressive multifocal leukoencephalopathy). I was told it was a rare brain virus for which there is no cure and it kills you.

It was a risk I accepted.

Over time they learned more about PML and they linked it to a virus called the JC Virus. They said that JCV was a very common virus and most people are exposed to it when they are children. They said that approximately 58% to 65% of all people test positive for JCV. They said “If you test JC negative you will never have to worry about PML, if you test positive, you’re still at risk for PML”

I tested positive.

In my mind though I had already accepted the risk of PML, so, really, nothing had changed.

As time passed, I was doing really well on the Tysabri, and because Barrow Neurological had started going through neurologists like you change your undies, the new docs, who had zero knowledge of my history, felt that Tysabri was ‘overkill’ for me. I clearly wasn’t one of the most severe cases (which is what Tysabri is for) and I shouldn’t be on it. I, of course, got angry and told them that they had no clue how far I’d come on the Tysabri. They hadn’t seen how bad I was. And that maybe instead of it being ‘overkill’ it was a life changing drug that was WORKING for me! Every six months though I would get the new pair of underwear fresh out of brain school, still working on his/her clinicals and I would have to fight all over again.

Last year at the MS Walk in November I met a man at one of the medical booths who, after hearing my frustration at the constantly changing underwear, suggested I see a new neurologist. He has no affiliation with this doctor’s office other than he is a medical rep for a company. (And no, I am not on the med he was peddling for you thinking that there was some kickback involved here).

I was a little scared to ‘lose my in’ at Barrow’s though. They were, at one time, one of the top rated neurological facilities in the world!!! It had taken nearly a miracle for me to even be accepted into their program initially, after the idiot neurologist here in Flagstaff told me, all within a couple of weeks that I had: TIA’s which would lead to a major stroke within 48 hours…..no, uhm actually it’s Epilepsy, here’s mega drugs for that….no wait, I mean it’s Parkinson’s disease……no, uhh it’s a brain tumor, yeah that’s it a brain tumor!

It was only after I finally got in at Barrow’s that I was correctly diagnosed. And the first two neurologists’ I had were incredible!

The first one, Dr Vollmer, was one of the leading doctor’s (again, in the WORLD) who specialized in ‘research and development’. I will never forget the day he told me he was leaving Barrow’s.

I was in the hospital (again – I was in the hospital a LOT!) and I, tearfully asked him, “How can you leave me?” He looked directly into my eyes, and his face was barely 10 inches away from mine, and said, “I am leaving BECAUSE of you”

I was shocked, and he continued … “I HAVE to find a cure for you! And I cannot do the work I need to do to cure you if I am here”

It was incredibly impactful.

He assured me that the doc he had hand-picked for me would be wonderful.

And he was.

Dr. Bomprezzi was this tiny little Italian man who looked like you could snap him like a twig. He had a thick accent that reminded me of my Nonna, and I loved him immediately.

He knew that the front office staff there were complete dolts, and he gave me his personal cell phone number to call him anytime I needed to speak with him. He even, one time, when I had an anaphylactic reaction to some new med, and was in the hospital up here in Flag, called me, just to check in on me and to apologise that I had had such a severe reaction to the medicine.

I adored this man.

After he left (I later found out one of the new baby docs that Barrow brought in was so abrasive and such a tool that he just couldn’t work with him. So he took one of the MANY offers he had to go to another facility) I began the new ‘normal’ for Barrow’s. The underwear docs, as described earlier.

So I had to really think, was my ‘in’ at Barrow’s really an ‘in’ anymore? They no longer had the stellar reputation they once did, especially not in the field of MS.

So I took a leap of faith, and made an appointment to see a new doctor. A doctor outside of Barrow’s. Dr Hendin. And holy cow, it’s like the clouds parted and a ray of sunshine beamed through and angels sang. I love this man. He evokes in me the same feeling of care that I had with both Doctor’s Vollmer and Bomprezzi.

He was concerned about the Tysabri, but for the first time, he actually had new information to offer me. Previously I had always been told that PML “is a brain virus that kills you”. Full stop. And much of the information available online up till that time declared the same.

I told him I had accepted that risk, and that I was fine with it, seeing as how life changing Tysabri had been for me.

He said “OK, I hear what you’re saying. You’re telling me that your life, before Tysabri, had gotten so debilitating that you are willing to accept death as an alternative to living that way. Am I correct?”

I told him he was correct.

He then shared with me new findings that showed the PML is no longer a death sentence. That, instead, it was just, utterly debilitating, leaving its victims, in a state far worse than anything I had experienced. Wheelchair bound, colostomy bag wearing, utterly disabled shells.

*gulp*

He also shared charts I had never seen that showed that people who tested JC positive and remained on Tysabri actually increased their chances of PML each infusion they have.

I had been told it was more a flat line. “If you’re going to get PML, you’re going to get it, no matter how long or how much Tysabri you take. It’s a yes or a no, not a sliding level of ‘it gets worse each time you take the stuff’”

He took time to talk with me. He left the decision entirely up to me, but armed with new facts, I wasn’t quite as willing to ‘accept the risk’.

Death I could handle, that was fine, but being left totally debilitated was too much.

I agreed to begin a new therapy.

I started it in February.

I have had some ucky side effects, but, when I told him about them at our 3 month follow up he told me to take a baby aspirin with each dose and that the horrible flushing would abate. It has.

I have had vertigo since the onset of this disease, so I am quite used to it. I have noticed a little more of it lately, but it happens so I don’t fret. It’s been so many years since I had had an exacerbation it’s not a big deal. Plus, I just got new glasses and the prescription is massively strong and my eye doc told me to expect issues.

My phone call that I received this morning and returned was Dr Hendin’s office. My MRI done on Wednesday showed a new and enhancing lesion.

The first new lesion I have had in over 4 years.

When I see him again we will have to talk about new treatment options.

This is the worst possible news I could imagine for this Friday morning.

I hope yours is better.