Me vs. medication and insurance

I just finished taking my nightly cocktail of 5 different medications which in turn becomes seven and a half pills. My neuro upped my Requip at the beginning of the month to help with my restless leg twitches so I take a pill and a half now. It's a good thing I just took it because my legs are starting to bounce and those muscles are ready to kick it up and do a cha cha cha in my calves.

In the morning I take four-five other medications (5 when I'm working) which turns out to be 6 pills spread out over the morning.

I'm also supposed to take a multi-vitamin, Omega-3 fish oil capsules, and a heavy duty Vitamin D3 daily.

Hello my name is Weeble and I'm a pillaholic.

I take meds to go to sleep, to avoid pain, to help with depression and anxiety, to calm my legs, to lower my blood pressure, to wake up and stay alert. Name it and I probably have it covered. I also take Tysabri monthly instead of the daily Copaxone shots for two years and an almost year long attempt at Rebif three-times-a-week.

I try not to think about how much my insurance is paying for these various medications. I'm pretty sure my insurance has a cap on it of a million or two. I wonder how long I can keep up with the pill and Tysabri train before the train is no longer able to leave the station. Does anyone else out there with MS or other medical issues ever think about this stuff? What will I do if I eventually hit the top of my limit? I know it won't be this year or next but it could happen.

I'm already paying a lot out of pocket for Tysabri and I just got a bill from OT I had this past summer for $155. I know how much some of my meds cost compared to what I pay for them. Thankfully, we have good prescription benefits where I work. Knock on wood. But still...

Just some things that have been on my mind recently. I have been thinking that maybe I should consider participating in a drug trial. You might get a placebo and you might not but all the costs are covered including doctor visits and MRIs. For now, I will stick with Tysabri and my pills.

Anyone have any thoughts on any of this?

Oh the little joys (annoyances) of MS

Once again my sleep is interrupted and I am awake at an ungodly hour. Yesterday I was awake from 2:30 - 4:45. Today I was awakened at three a.m. and I found I had peed the bed a little. Yippee! Isn't that what every 38-year old woman does?

I know my multiple sclerosis is fairly benign compared to other people's MS. However, it's been ramping up silently and slowly lately and it's starting to really annoy me. For example, the sleep thing is getting ridiculous. I take enough meds at night to knock out a horse. Two of those meds are Requip and Baclofen which should take the edge off my muscle twitches but not so much lately.

Most nights, or should I say mornings, I'm aroused (NOT in that way) because my legs are a-popping. My calf and lower leg muscles are bouncing around and bouncing against each other. I can only ignore so much and then I get out of bed. Once I am upright the popping or muscle fasciculations (fancy word for twitches) usually stop. I am so desperate to sleep through the night that I usually put a hot corn bag (like a heating pad) under both legs each night before I go to sleep. That is what I used to do this past summer and it worked much better than it is now.

So here I am b!tching about minor things when I know it can be much worse. I need to call the neuro's office again today to check on things. The last time I was there we talked about my lack of sleep, which, if you know me has never been a real problem before. I need to talk about my increase in leg fasciculations because it's not even close to summer yet when things really ramp up to a high level.

Anyone have any ideas or suggestions for the sleep and/or muscle twitches? I don't think it's a case of missing any potassium or something like that. I know the neuro wanted to try melatonin for sleep but I am wary of that because a friend sent me a link saying that it may not be the best for people with MS and that it can affect depression which I also deal with on a daily basis. That means I need to ask the neuro about that specifically.

Sigh, I know it could be worse but it's not usually like this in April when it's not even hot yet. I'm done b!thcing for now. Wish me good night, please!

Still sleepy but I'm a twitching and a message not from our sponsor

I received this message the other day in my comments section and I'm placing it here because I know some of you readers are also MS bloggers. I haven't done any searching to see what mediciglobal is and if this is even legit. Maybe one of you has already done the searching and can inform me or one of you will do the searching and then can inform me. I hate to put up any type of misinformation and I am wondering who Ashley is a Patient Advocate for as she doesn't mention the actual group she works for in the message. If anyone knows anything about this, please let me know. With no further ado, here is Ashley's message:


{I couldn't seem to find any of your contact information, so I hope you don't mind me leaving a comment on your blog!

My name is Ashley Toal, and I work in Patient Advocacy. We’re working on a multiple sclerosis clinical research study assessing the safety and effectiveness of an oral investigational study medication, teriflunomide. We’d love your help in informing the MS community about this study. Since your blog is so influential in the MS community, do you think you'd like to post some of the study information on your blog?

You can contact me any time at atoal@mediciglobal.com and I'd be more than happy to e-mail you the information.

Thanks again!

Ashley Toal

atoal@mediciglobal.com}

Okay, now back to me, me, me.

I was still sleepy this morning but woke up the first time before eleven, methinks it was about nineish. (I went to bed about 9 p.m. so it was about twelve hours of sleep.) I got myself up and threw on some dirty clothes and ate a breakfast of salad and leftover pizza. I also threw some kitty vittles in the wonder cat's bowl.

I watched a little TV and felt tired again but I had taken my morning meds today after forgetting them yesterday until too late. I knew it would be a shorter nap because I had taken my Provigil this morning. The second time I woke up it was about 12:30 p.m. and I putzed around for a bit before taking my shower.

Since then I have played on Facebook, ordered contact lenses online, and dragged my laundry over to another building to use their washer as ours is broken again. I have since dragged it back over to my drier and it's spinning around. I am also washing the dishes in cycles, so many for a few minutes, then back to the computer, and repeat. I fed the cat his afternoon dinner. Now I am awake.

Not singing and dancing awake but awake. Oh, and the 60 degrees predicted for today was a big ole bust. It's raining now and I think it hit the high 40s. I am still wearing my shorts because by golly I shaved my legs and that is just the way it is. You only really get one good day when you shave your legs and this is it so I am showing those piano legs off.

Now to the twitches. I get them primarily in my fingers on the right hand, my eyes, my legs, and the bicep area of my left arm. I sometimes get them in other places like my lips or my buttocks; I can hear Forrest Gump right now telling the President he got hit in the buttocks from that famous movie. I mostly get them in my hands and eyes at night. Before I fall asleep while reading my eyesight gets really wacky from the twitching and getting tired. The words slip away off the page and lines disappear into other lines and letters aren't in words in the correct spots.

The twitches aren't painful, just sometimes slightly annoying, especially in the fingers. Now spasms can be painful. I generally get those in my legs at night and I wish them on no one. I have had spasms so bad in my legs that my whole leg pulses as my calf muscles spasm while the leg is pushed out into one straight line. You can't move or bend the leg and you can barely breathe because the pain is so bad. The muscle cramps and spasms for 5 minutes, then ten, then maybe twenty or more minutes. It's as if the calf muscle is trying to birth itself through the skin. Nice imagery, huh?

People say to get out of bed and walk or massage the muscle. When you get spasms like this the leg is no longer my own. It's taken over by the spasm and I cannot move. The slightest move makes the spasm stronger. It's all I can do to keep from screaming because I try to control the pain by the pregnancy type breathing and prayer. Unfortunately, once it stops and I do get out of bed I am hobbling and the muscle is twitching again which usually leads to another full on spasm and little sleep. This process can go on three times in an evening of "sleep" and basically gives you a rough start to a new morning. These kind of spasms I generally get in the summer, yippee.

So twitches I can handle. Anyone else out there get those annoying little bug you twitches? Mine are pretty much daily but I can deal with them. For those of you with spasms I feel for you, I really do.

I may not write tomorrow as its haircut in the morning and in the afternoon I am going to the doctor's with my dad and family and then we are eating at Red Lobster's for my brother's early birthday. He will turn 30 on Friday which is when he is leaving to return to Iraq so that's why we are going out tomorrow. I'll have to wear one of my new PIP, probably the jeans.

Thanks for stopping by!