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.