new medication – Multiple Sclerosis & Me

MiSdiagnosis

I’ve wondered in the past if the doctors made a mistake and i really don’t have MS. Of course, after I have those thoughts, i think well there has GOT to be some kinda explanation for the things that have been happening. I can probably explain away the falls as my being a klutz, but everything else? not so much. Also, the only symptom (Y can’t i spell this word on the 1st try???) that I experience is walking problems (i’m not complaining, really I’m not but it always makes me wonder).

People have been asking me recently if the new meds are working. I knew without a doubt that the Ampyra made a tremendous difference – no question. Have i seen a difference now that I’m also taking Tysabri? I really can’t say for sure. I mentioned before that the Tysabri at first appeared to be negating what the Ampyra did. That wasn’t an EXACT statement, in that before taking the Ampyra, my feet/ankles (that region) were very weak…started taking the Ampyra and that was improved and now, I no longer drag my feet but after I started taking Tysabri and i stay upright for too long, my knees start locking up…WTF??!?!? Is that the MS or something else? Is it that the muscles that normally keep that from happening are weak? what the fcuk is it? Now, i will admit that it is not as bad as the first weekend after the 1st Tysabri infusion but still…

so to go along with those thoughts of a misdiagnosis, I also wonder if I’m taking all these meds for nothing. Are they making a difference? Shit – hell if I know! i guess…I hope…but i really can’t bet my life on it!

More Resultssigh

Did i ever mention on this site that I hate having this disease? Well i do…i really do.

I went to my neuro yesterday to get the results of those 3 MRIs -brain, upper and lower spine. Good news is that I have no additional scarring on my brain. Bad news is that i have 3 lesions on my spine. Now, in all fairness i can’t really classify that as total bad news. It explains why I am having so much trouble walking i s’pose. The unfortunate thing is that this is the first spinal MRI i’ve ever had so we have no baseline to measure against. He is concerned because I have to admit that it has gotten progressively worse over time. It used to be that i would have problems after walking or standing for a long time; now it’s almost always ALL the time regardless. PT helps it does, but it doesn’t negate the fact that the walking problems have progressively gotten worse. He is concerned (and he raises a good point) about what state i might be in in 6 months. Anyone around me regularly can see how it’s gotten progressively worse. So, where does that leave me? he wants to change my meds…

Good news/bad news. The good news is that i will no longer have to take a daily shot (YEAH BABY!!!). The bad news is that the one he would prefer me to go on has a side effect of a brain infection – SHEEEEIT!!!! It’s a much more aggressive medication than the one i’m currently on and i’ve heard great things about it but… really? do they always have to have shit hanging over ur head like that? can’t something just work FOR u without all the bloody side effects??? It’s also an IV infusion so I’ll have to go into his office once a month to get my infusion – HAPPY HAPPY JOY JOY!!!! The cost? haven’t a clue but once again, I have to wait to be approved by the insurance company and everybody else in the world before i get started.

The brain infection is rare (thank God!) and it is more likely to occur in patients with a compromised immune system. So they do extensive blood testing and TB testing before you are even considered as a good candidate for it. I’ve done research and in this instance, i believe that the benefits outweigh the risks and I’m willing to give it a try. He said that we can try it for 6 months and see how it’s going/how I feel and re-evaluate if necessary.

Did i ever mention that I really hate having this disease? I know that it’s not the worse thing that can happen to me and for that I’m grateful, but i really do hate having it.

So Far So Good

Everything I’ve found out about the new medication so far is good news…

IT IS now AVAILABLE!!!
The manufacturers have negotiated a price of $40/month for privately insured patients (hoping that i fall in this category; can’t imagine that i don’t)
The specialty pharmacy I use for my other medication has it and will be able to mail it to me (also hoping that this would be the case so i wouldn’t have to search out a new pharmacy)

Next Step:

Go to my doctor and getting the prescription!

Everything couldn’t be looking so good and then i go to him on 3/23 and he doesn’t want to prescribe it for me could it? I am the biggest pessimist that u’ll ever meet, but i am being very positive right now. I cannot believe that he won’t want to prescribe it for me – that is just NOT an option.

Anyhoo, so mark ur calendars! 🙂 3/23 @ 2:30, one week from today, i go to him. You will get the news on 3/24 🙂

I couldn’t think of an suitable picture, so enjoy a picture of me, since this post is somewhat personal

🙂

Countdown is On!

the countdown to visiting my doctor to getting a prescription for the new drug – they say it will be available in March (no date – i figure i’ll go to him sometime in the middle of the month)…i wonder if he’ll agree with me that i am a good candidate for the drug. Will he “fight” me with my decision to go on it? Isn’t it ultimately my decision?

I’ve learned that the drug will a little over $1000 for a 30day supply!! Whoa! How much of that will my insurance cover? UGH! The good news is that my current medication (the lovable daily shot!) cost more than that as far as i know, so maybe $1k is small change and the insurance company will gimme a break..

Will the damn thing even work??!?!?!

Right now i have more questions than answers…hopefully these questions will be answered during the next month or so, but until then – fingers, toes, eyes, legs r all crossed and I’m hoping for the best.

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