Wednesday, November 06, 2013

What the hell is AETNA/other insurances thinking with this "Step Treatment"? Check this out, few readers and NSA types:

"For Tecfidera
  • A documented diagnosis of relapsing remitting multiple sclerosis AND documentation of all of the following:
    • Discontinuation of other therapies used for treating multiple sclerosis while on therapy with Tecfidera (Note: This does NOT require having to discontinue Ampyra)
    • Recent (within 6 months) complete blood count (CBC)
    • A documented contraindication or intolerance or allergy or failure of a one month trial each of the following preferred alternatives, Avonex or Rebif AND Copaxone"  
So essentially, poke yourself for two months to be sure you have an allergy, failure, or intolerance to the ABCR drugs before taking a drug that so far has shown promise and works better for the most part than these drugs. And oh yes, you can ask for a medical exception...provided someone is willing to put in the paperwork.

EVERY one of the first line MS drugs have been put on this step list, including Avonex. I'm trying to get my brain around the puzzle... who figured out what one should take before insurance will ok Avonex? Is Extavia ok to use as a 'step' to Copaxone? I mean what the hell?

Oh, I'm cranky-angry. This is stupid stuff.  Can I go to my insurance rep and poke him or her with needles for a month or two and see how tolerant THEY are?

Grump, grrr, bah!

Sunday, October 06, 2013

Hmm, well ok...

So, while my MS is really quite "benign" according to my Neuro, and as dean of the school of medicine I hope he'd know, we're thinking of maybe starting Tecfidera. His point, and it is good, I'd that at 43 (as of 10/2), I'll be living with MS a loooong time, potentially. I think we're both sure I won't always be doing well.

I'm more concerned about cognitive issues, though. The ocrelizumab I had in the clinical trial still seems to be having some good effects, though still chronically tired. I'm not sure what to think about the new drugs, either. He likes their results, I don't like having to take them forever.

That's whiny, I know. But I'm entitled. I don't see him for four months, so there's time, and maybe being back home is enough for now to calm my jangled nerves.

Friday, September 27, 2013

Welcome back, now here's your next challenge!

Well, I'm pleased to say I'm back in my hometown after entirely too long in AZ. I find myself having the weirdest kind of mild "PTSD"-- like having bad dreams about being there, dealing with certain people who just are not happy campers or who are simply snakes in the grass... the heavy, uncollegial, suspicious feelings were a lot to take, and I find that I may have to take some time to let them go. I'm still too touchy, too impatient, too sure the other shoe is about to drop.

And I really like my new job, even though it's been a bit hectic. I've not been on it for quite two months, and I have a lot to learn, but I know I can handle it. IF I can handle my own issues from the bad times in AZ.

Then of course, while I have great insurance, I have THIS picture above. It's not too bad overall, I THINK, but I don't know what my new neurologist will think of it.  The little bright spots on the left and right are pretty clear, but the radiology report wasn't panicky or anything.  My main worry is that I may have to go on meds, or he will want me to go on meds, and frankly, that will be expensive. I've been researching LDN, but really...

I took a big paycut to come back home to work at a place I've always wanted to work.  So, needless to say there have been bigger than normal changes. In addition the hubby's mom is quite poorly, and I'm not sure how much longer she'll be with us.  So there's that.

I know I need to take some time, and I know I need to stop feeling imminent dread all the time. Bear joined a MCC church here, and I like the preacher, even if I'm pretty much a heathen.  I kind of wish I could talk to him about my fears, or to anyone, but it all seems a bit pointless. I don't believe there's a supergod above who intervenes. So who to talk to, and to what avail?  So what? It's not like I'm going to get better all of a sudden and wake up with no brain spots.  I will eventually have to take some kind of meds again, and I may end up in a totally pimped-out, rhinestoned wheelchair one day.  That much I'm ok with. I guess I wish I was more okay with being me and realizing I have a lot of fallout form the past seven years to deal with.

Anyway... at the least, new start!

Monday, July 15, 2013


No, not from my MS, but my heat-intolerant butt is getting out of the maniacally terrible heat of AZ and back home to humidity and FAMILY in Texas! I'm really quite happy to be leaving.... I mean, my neuro is no longer here and why not give someone else a chance to see the bright lights in my head!

I'll also be switching jobs, though still in education-- this time I'll be working with students on the path to potential PhD-hood.  It's a very nice grant program, and I already like the people I've spoken to-- to top it off, it's at my old undergrad, the only school to which I actually give any money! :)

Yes, paycut. Yes, some friends will be much missed... BUT I'M GOING HOME, BABY!!

Monday, May 13, 2013

MS Hugs are not for Wimps.

Clearly the gods and goddesses of the MS wilds have shat on me again. I spent a month and a half with what I finally realized was the first instance of the "MS hug".  Oddly, it was mostly on the right side, and I and others thought i might have torn my rotator cuff. Nothing really helped, but it finally settled down. Now I'm a little aphasic now and then and have trouble spelling at times. ALWAYS fun.

World MS day is closing in and I guess I don't have anything going on, since we raised money via Zumba for MS. The proceeds, almost 500, went to the Barrow neurological foundation at St Joseph's in PHX. I do admit, though, that I'm ready to leave the hospital when I move to Texas-- both my original MS doc and the replacement neuro have left the hospital.  Indeed, my original doc leaving is really what unlocked the doors to me getting the hell out.  Right now I'm trying to manage with my neuro in town, who is actually going to go back to school in July, and so he'll be leaving.  I think I will ask him if he would prescribe modafinil, as frankly, I'm hating the brain fog and general debility.  It's been an exhausting year so far, and the job has certainly not helped!

In any event, I'm going to have to manage my stress better-- this job ends 6/30 and technically I'll be job and check-less until about Aug 15th. Lovely.  We do plan to move either July or December away from this forsaken place, job or not.  Let's see how that works out-- i mean, there are always clinical trials, right?

Thursday, March 07, 2013

Have a heart, save a brain

It's MS Awareness Month. Have a heart, save a brain...

I'm organizing a March 16th St Patrick's Zumba Party to benefit St Joseph's MS Research in Phoenix.  They helped me get my brain and life back... it's the least I can do!

Hope everyone out there is having sunny days, or at least staying warm.
(Brain and heart products of my independent study ceramics class...)

Wednesday, February 06, 2013

Going to pot? (sorry...)

So it's clearly been too long, during which time I've gotten a temporary title and money raise, and for the most part my MS has been manageable except for recent muscle weakness issues.

However, among other interesting developments, AZ, my state of residence, has legalized the use of medical marijuana, and spasms such as in MS are one of the specific reasons to request use.  Will I request? I'm not sure, but I will say that I am annoyed by the difficulty of dealing with pain and spasms without falling asleep after taking clonazepam.

I'm not anti drug at all. I'm not even pro-pot per se.  But I have been very fortunate post-clinical trial to be generally okay.  Zumba still helps keep me moving, but Ican feel that weakness creeping up on my legs.  I'm a lot slower-moving now than a week ago, just to not keel over when my knee goes.  I carry a cane just in case.  I'm pretty damn lucky, as well as incredibly stubborn and determined.

At least MM would not be invasive surgery, or an implanted pump, or other medical temporary solutions to spasms and pain.  I'm just not really sure how I would feel using MM and being paranoid, even if protected by law, of being 'caught' with it.

Oh well. We shall see what my pain management neuro has to say about the issue. I bet he'll poke me with an acupuncture needle...:)