Day Three after Tysabri.

Well, when I got to the infusion area at the docs office, they had to read my TB test. Negative. They got me all set up for the IV. The nurse had to give me some Benedryl for the itching that the Tysabri causes. It wasn't all bad after that.

The infusion went smoother than I could expect. It would have helped if I would have drank more water a couple of days beforehand.  Being well hydrated helps your veins pop and you'll end up will less sticks.  It took my particular nurse (that particular day) two times to get the vein. That is really good considering I have been stuck up to EIGHT times for the nurses to get an IV of solu-medrol in my arm. I'd rather have two instead of eight sticks.

I feel pretty good. Right afterwards, I felt sleepy, fatigued, etc. due to the Benedryl and my MS trying to stop it. For one or two days after the Ty, I had a headache, but not a debilitating or disabling one. I gladly welcome those.

Today, I actually have enough energy to do some of my physical therapy exercises and I did some of those. I am typing this during a break.  I did 30 squats with my beloved partners in crime, the kitchen sink and my wheelchair in tow. I park my wheelchair about two feet from the sink.  I have to make sure I don't knock my knees into the cabinets. I also did the standing hip abductor exercises. (Three sets of ten for each side.)  The kitchen counter is an awesome side-stepping buddy. I did that three times, as well.  My hip abductors are weaker than some of the other leg muscles that I have. I think the Ty will probably fix all of that along with me exercising.  After side-stepping along the counter, my legs started to go all wonky and tingly.

My rating for Day Three (on a scale of 0 to 10, with 10 being complete and total awesomeness, and 0 being a frustrated go-crawl-in-a-hole-MS-and-die!) is a 2.  Much better than an 0, which is where I started at before the Ty. So, here's to a TWO!! *takes a shot of water* WOOHOO!

And here's to kicking the MS in the junk!! A video I made of me and MonSter fighting in a wrestling ring. It wouldn't let me be a girl wrestler...sigh...but I'm the one in light blue. LOL!

My first infusion of Tysabri!! Today?? Maybe.

I am very excited to be starting this new medicine for MS. It is not a new one been around for a few years. There are risks, but I think the benefits outweigh those risks. My MS is going DOWN!! It has had me trapped inside my home and in a wheelchair for WAY too long.

I will blog more about my infusion and all today afterwards if I can. I will keep y'all updated on how the Tysabri is treating me and what can possibly happen i.e., reactions and whatnot, when you start it. I say "possibly happen" because every MS patient is different and will react differently to different medications.

There are many people who are on Tysabri and are video journaling their progress. I have found a few on YouTube just by searching for Tysabri. One that I am subscribed to has had 40+ infusions. No, PML. But as we all know, PML is unpredictable and there's no telling who can develop/get it.

Praying for no adverse reactions, Thanking and praising the Lord and God for making this possible....

Here's a vid of how I hope it all will go down...

Consultation for Tysabri

The consultation was yesterday.  It went really well.  There were more tests that needed to be done.  Liver testing mainly through the blood draw and the vampire tubes.  I only had two of those vampire tubes attack me. (LOL!) The doc is a oncologist and is a member of the TOUCH prescribing program.  It's really cool that his office is directly across from the waiting room from my neurologist. They will certainly be talking with each other.

The doc did a very thorough medical history on me. I mean all the way back up the family tree to the great grandparents from myself and my siblings. (I think I hit a few branches on the way down from the top, hee hee.) After that, he examined me by poking and prodding like normal docs do, but he was also checking for other issues that I may not know about...i.e. like lumps and whatnot in lymph nodes, stomach, etc.

He also checked to see if my insurance approved the therapy.  I guess they did, but he was concerned about some of the recent tests I had taken.  They were done last July. After the vampire tubes yesterday, I still had to get a TB test.  Thing is with those is that it has to be read in 72 hours. If it is positive for TB, I can't take the Tysabri and that will suck.

I am lucky to be holding on pretty good for the past month or so with no MS meds/therapies at all.  Feet are still numb and legs are tingling bad. Only a few more days. I can hold on that long, if the Lord is willing.

The date is set.

The date is set for the consultation and possible infusion on December 6th.  I have to go through an interrogation just for the doctor to deem me ready for it, I reckon.  (Hence, the "possible" part.) I'm ready for it.  I was ready, like, last week to start it.  I have to call my peeps at the Army hospital and get a referral set up, so I can see said doctor.  Luckily, I have a case manager who is the awesome of all that is awesome! She has been there since I was released from the rehabilitation hospital.

My legs aren't doing so good right, now. It's like since I had to stop taking the Rebif, the MS is now running off-leash like a wild flipping monkey. In. My. Brain. doing all the damage it can. *sigh*  Oh well, I do know if junk/symptoms get worse, I'm calling the neurologist.  The junk has been increasing in intensity over the past two weeks.  I'm trying really hard to hold off on calling the neuro. A "wait 'n watch" type of thing, (which may not be the best idea) but I do not want to go in only to delay my meds any longer than what I have to, if that makes any sense.

Cognitively, I'm slipping in the speech area.  Stuttering mainly, and using the wrong word for another word.  I wonder if I'll have to go through more physical therapy and possibly speech therapy after all this is said and done.  I have hopes for this Tysabri.

1. I hope it kicks the paralysis out for GOOD.
2. I hope it puts the MS back into the remission corner.
3. I hope to walk without holding onto the furniture, walls, and the Earth for dear life anymore.
4. I hope it kills some of the invisible symptoms that I do have.
5. I hope the fatigue goes away.
6. I hope my strength returns.
7. I hope my energy levels return to somewhat normal levels.
8. I hope to be able to take care of myself 100% and my kids, too.
9. I hope my legs and body have normal sensations in them again. (When I touch something, I want to be able to feel the texture.)
10. I hope to have all my strength back, so I can physically throw my wheelchair into the dumpster.

Ending week two and entering week three with no MS meds

Well, my feet and legs are more numb and tingling.  My balance is not all that great.  I am not finding my center to hold myself upright.  I have to be a little hunched in order to maintain from falling on my face.  I worked on that this morning, though.

I am using some daily activities to help my balance and core muscles to stay strong.  I stand as much as I can for as long as I can.  Like, when I'm brushing my teeth. I will stand through the whole process. The motions of my arms help make me wobble a little.  If the wobble gets to be too much or I get weak, I'll use one hand to rest on the counter to help maintain my stability.  I do my usual reaching up, down, and across to each side while sitting to exercise my core muscles.

I still have a lot of work to go.  I do not have outpatient physical therapy anymore at the rehabilitation hospital.  I have to work on it myself if I want to walk again, which I do. Nothing motivates a person more than the fear of being paralyzed from the waist down all over again because of Multiple Sclerosis.  God has carried me through.  My family has helped immensely.  I could not ask for more.

My Adderall and Provigil experience

Last month, my neuro put me on Provigil for fatigue.  It worked.  It helped keep me awake all day.  My two real problems with the Provigil is the headache and the crash.  The headache would hit me a few minutes after taking it.  The crash would come at around two in the afternoon.  I was completely "DONE FOR"!  When I made it to bed for the evening, I was out.  I did not wake up for anything until the next day.

I told my neuro about all of that and he put me on Adderall.  I have been on Adderall for a few days now.  It is working. There is no headache with it. This is from what I have experienced thus far.  The only issue that I do have is the dizziness.  It could just be the MS doing that since, I am not on any MS-modifying medications at the moment, in preparation for the Tysabri.

There is a head rush that comes if I stand up too fast or make a sudden movement while standing with the Addreall. The first couple of days, the Adderall made me nauseous. (That could also be the MS, as well, but I digress.)   It has been a week since I have started the Adderall.  Everyday gets a little better on this medication.  The biggest benefits are the ability to focus a lot better, to stay awake all day, and I have the energy to do what I need to do. (Just not too fast! Ha, ha!)  

All in all, there are many meds that can help with MS fatigue.  It is just a matter of trial and error.  I do have to offer some tidbits of advice...

If headache is a side effect, take some Tylenol, Motrin, Aleve, etc., when you take the anti-fatigue medication.  It will help immensely.

If you are nauseated after you have taken the medication for fatigue, eat some ginger snaps, saltines, or any other type of stomach settling food.  It makes that side effect a little bit easier to deal with.

If you're dizzy, take it slow.  It can take a while for your body to get use to the medications.  I took the Provigil for a month just to give it time to work and for my body to get use to it.

I am doing the same for the Adderall.  MS meds: I gave Avonex six years, Copaxone six months, Rebif eleven months, and Tysabri is to be determined.

Happy Halloween!

Well, tomorrow will be one week with no disease-modifying medication for my MS.  My MS is misbehaving something kind of fierce.  My strength has decreased, along with my coordination and fine motor skills.  I have also been reading up on the risks with the new med Tysabri today.  There is a slight chance that I might die....like less than half of a percent chance.

This really has me thinking about the quality of my life, not so much of how long I am going to live.  I am not remotely, interested in the quantity of years left.  I just want to enjoy every moment that I do have left.  Maybe, this is why I want to shed the negativity and my own negative thinking about certain things.  It doesn't help at all that the disease modifying drugs for MS and the MS itself causes depression.

I just want the people who are the most important to me will have great memories of me and I of them.  The best thing about today was listening to Top, Nerf (my oldest son), and Doc (my youngest son) working in the kitchen together to make dinner.  It was one of the sweetest sounds in the world, next to the chaos that ensued shortly after at the dinner table.  I have to teach them the importance of having a family dinner every night. The know that they have to eat at the table with the rest of the family, but they get distracted by every-little-thing-that-moves-and-leaves-the-table-then-wonders-why-everyone-else-finishes-before-them.  Still, all good experiences, but that depends on how you look at it.

I take a step back when I start to get frustrated and try to think of another way to explain the solution for all of them to understand.  I have learned this since being diagnosed and when my Nerf was diagnosed with Autism-PDD.  I hope I have taught them to be more patient with their own children and patient with Top.  Poor Top has served our great country for a while now. He has missed out on so much with Nerf and Doc.  I guess I have to miss out on some of these experiences or share some with Top, so he can have some firsts with Nerf and Doc.

For the past year and a half, I had no choice but to share.  Top had to take them to their first day at their new schools.  He has also had to do most of the cooking, cleaning, and all the other things on top of taking care of me.  I am blessed to have him in my life.  He does a really good job of picking up my slack when the MS gets all snitchy and when I get all dagger-happy, due to the MS and MS medication caused emotional issues.  Poor Top.

He needed help doing all of these things, and is active duty in the Army. It was like I was the one deployed, but not to Iraq or any other country.  I was a POW in my own body, and it was all thanks to the dictator named, Multiple Sclerosis.  Top's brother, Bro, came to help with Nerf and Doc since my family could not afford to do this. (Granted, no one really could with the crappy economy.)

During this time, a LOT had happened.  His mom passed at one of the happiest times in her life. She was expecting another grandchild, all the while praying for that particular grandchild to be a girl.  She even got to see her youngest and only daughter get married.  No one knew that Death was knocking on her door to take her. So, he took her at the best time of her life.  I had sent her picture messages of me standing with my walker and the boys. This made her day. She hated that she couldn't leave her job to come help us, like we helped her and dad a few years ago.  She knew that I didn't expect anything in return for what I did to help the family after her battle with uterine cancer.  I would jokingly say to her, "Oh, I know where ya live."

She also knew that I gave a darn about her and her health.  I even threatened to drag my crippled rear out of the house to take her to an appointment-that-she-was-not-going-to-miss-on-my-watch-while-Top-was-deployed.  After all, our relationship as mother-in-law and daughter-in-law was closer than the relationship that I have with my own mama because we shared the experience of being diagnosed with something that would jack us up real bad and she lived close by, but I digress.  She is the grandma of a cute and squishy granddaughter!

Not too long after her passing, Top's dad, Dad, retired from working to come and help out with the kids while he focused on the Army work, me, and my appointments.  Dad is amazing and stronger than I'd ever be if that would have happened to Top (knock on wood). I'm glad Dad is here.  He is enjoying his grandsons, Top, and Bro's company.  Again, Quality of life.  As soon as I am back up and running, Dad will be able to get more Quality of life...traveling the country-side to visit all his grandchildren, his only granddaughter, and the rest of the family. Hence, adding to my quality of life. He won't feel like he has to be here so much.  (Note: I feel that the MS has the entire family trapped...sigh...)  As for Top, I hope that he'll be able to see things the way that I do and be able to keep that with him forever.

My MS journey...

Just a small town girl,
Living in a crazy world,
Got on the MS train,
That's not going anywhere...

This is how it feels sometimes.

I was diagnosed in 2003, but had physical symptoms since 2002.  My diagnosis came while I was pregnant with my youngest son.  I did not start treatment until August that year.  This blog is about my journey with MS and its medications.  I have been through three so far, and I am going to start on number four here soon.

The first med I tried was Avonex, which isn't a bad drug.  It is a once a week, intramuscular injection.  For almost six years, I did just that.  In 2007, my legs started to be weird, weirder than normal.  I would get foot drop or drop foot for a week or more.  (There was much that happened from 2003 to 2005, but I will explain that later on.) Th numbness, tingling, and the weakness in 2007 jump started the WHOLE ordeal that I am in at the present time.

Top (my husband) was deployed to Iraq in 2007.  During that time, I was thinking maybe it is stress causing my symptoms like it did during the previous two deployments.  But then, my mother-in-law had some really scary health issues. Uterine cancer, which sucked and still does suck.  She made it through that. My MS symptoms worsened.

By November 2008, Top returned from a fifteen month long deployment.  I had issues walking even then.  In May 2009, my neurologist's PA switched my medication from Avonex to Copaxone.  I was fine with that the first month, but the stinging started to drive me a little bonkers.  I stayed on the Copaxone for a good six months.

We moved or PCS'ed to GA.  I ended up being paralyzed from the waist down in June 2009.  I was hospitalized for a month and a half.  My new neurologist put me on Rebif in December 2009.  I have been using Rebif since.  The struggle to walk has been a one step forward and then two steps backwards.  This entire ordeal, (I must add) was all due to an EVIL underlying infection that went untreated properly by the folks at a hospital in TN.  Urinary tract infection.  Ladies and Gentlemen with MS, please look out for the signs. If you are using the restroom more than normal, get to a doctor, have them do a culture, and prescribe the CORRECT antibiotic.  I cannot stress how important it is to get this small infection in the beginning.

After months of physical therapy and almost a year of Rebif, I am able to walk for short distances while holding on for dear life.  My legs still wear out easily.  I cook and do what I can with my children. Sometimes, I get weepy and depressed with the large dose of interferon three times a week.  Rebif has done wonders with me, but I have plateaued.  So, my neurologist, Top, and I are all in agreement to move on to the bigger guns to help get me out of this wheelchair.

Next up is Tysabri.  I know a couple of people have died during the trials.  They were also taking Avonex while getting the Tysabri.  Their immune systems could not handle being suppressed that far.  It was a double-whammy, you see.  I am well aware of the risks involved, but if it kicks my MS's a$$, then it is a risk I am more than willing to take.  I am keeping positive thoughts and positive energy around me as much as I can.  Being optimistic about changing meds is what will help make it work, along with prayer.

Here's a video of how my first doctor's opinion went. (Note-he was an ophthalmologist.)