Goodbye, Avonex....

So I had my neuro (he's an ms specialist) appt this week.  I explained that my legs get very tired after walking for a bit of time and I'm not walking as fast as I used to (as shown by not being able to keep up with my son's 6'2" stride as well as I used to).  I also told him about the numbness and tingling that comes and goes in my fingers and toes.  He decided that I am "breaking through" the Avonex and that "it's not working for me".  Huh.... I didn't see that coming.  Because I feel like I'm (very) slowly getting better, I thought I'd stay put with the Avonex.  He feels, however, that since the ms is "active" on Avonex, it's not working.  Okay, so now what?

Gilenya.  Now when I saw him for the first time in February and he wanted to put me on a DMD, I asked about Gilenya.  He told me I wasn't bad enough for that.  Well, now apparently I am.  Looking on the bright side, no more injections.  That's nice.  But I can't help but worry about that heart stopping side effect that can happen with the first dose.  It's due to this that I take my first dose at the doctor's (in the infusion room) and stay for 6 hours while they monitor my heart and BP.  I get light headed easily and my BP dropped during a solu-medrol injection.  I hope I can get through this without kissing the floor.

So the paper work has begun and I am in the process of getting testing done that is completed prior to beginning Gilenya.  I have been to the eye doc and had tests done then, so that one is taken care of.  I also had an MRI a couple of months ago so I don't need that, either.  I do need blood work and a urinalysis, a TB test (which is done and was negative), and an EKG.  The blood work and EKG will be done next week and then I should be able to set up my first dose appt for a week or two after that.

Great....school begins on the 8th and I'll have to take a day off shortly after.  I was looking at some side effects and HAIR LOSS is one of them.  Are you kidding me?  At least I feel that my hair thinning is slowing down a bit, but now if it revs up with a new med.....I'll be in trouble!

Until next time....

Keeping busy...

I've been trying to keep busy these days.  With my two kids, house to clean, garden to keep up...it's not too difficult.  We have been going out on day trips and it's been good.  I feel like my legs continue to improve and I get less and less tired and able to walk more and more.  I have been eating better again (had some high gluten days) and that definitely makes me feel better.

I've been in to work on my classroom a couple of times.  I'm in good shape and only need probably one more 1/2 day and I'll be ready for the kiddos.  Two weeks of vacation left.  I can't believe summer is almost over.

I have my neuro appt on Tuesday and I can't wait.  Yes, my hair is still falling out due to the Avonex.  I don't think it's really noticeable to people who don't know, but it's still thinning.  I will be interested to see what doc says about it.  I'm doing okay on the Avonex otherwise so I will hate to switch if that's what he wants me to do.  Don't get me wrong, I don't want to keep losing my hair, either.  I was really hoping that my body would get used to things and it would just stop.

Well, off to get dinner on the table.  Crock pot lasange (the easiest thing EVER) and salad for my men and shrimp and salad for me.

MS and exercise...

This has always been a very confusing area for me.  I'll be honest.  I hate exercising.  Hate it.  I've tried many times to follow some sort of exercise routine.  I have a treadmill and have tried to at least walk for 30 min/3-4 times a week.  The problem?  It doesn't make me feel good.

So many of the blogs that I have read lately talk about exercise and how it makes the person (with ms) feel so energized.  Well, the opposite occurs for me.  It totally wears me out.  Afterwards I feel like a wet noodle.

So what's up?  Is it that different for different people?  Am I missing something?  Don't get me wrong.  If I just lay around I don't feel that great, either.  Doing things like running errands, cleaning the house, gardening, etc seems like a fine, happy medium for me.   I wonder if there's others out there like me.....

It's been awhile....

...since I posted last.  This summer has been a bit of a struggle.  I'm still feeling my January attack.  While my legs are less heavy, they still aren't "right".  Walking long distances (like around the mall) is very tiring and sometimes overwhelming.  I still have numbness that comes and goes in my fingers and toes.  Finally, my bladder is crazy.  I have to urinate frequently and have been getting up 2-3 times a night to "go".


I'm still taking the Avonex.  I don't get the flu like symptoms too badly, if at all.  Each week is really different.  Mostly it seems to make me tired and lazy for at least the first 24 hours after injection.  The terrible and stressful part is that my hair is falling out.  It's been coming out since the beginning of July.  My neuro says it will stop, but it's not and it's very stressful.  I got about 3 inches cut off but it still looks terrible.  I went on-line and this seems to happen with the beta-interferons (so Rebif and Avonex).  It also happens with Copaxone (which isn't an option for me because my neuro said that it does not do anything to slow the disease) and Tysabri.  So, it seems that I'm just screwed.  I am using Nioxin shampoo and conditioner, which is supposed to help hair growth.  I also take extra zinc and biotin.  There does seem to be new growth, but it's still falling out.  I really dread washing it because it's a horrible sight to see all the hair around the drain and then in my hairbrush.  I see my neuro in a couple of weeks so we'll see what he says.  


I've eased up on my rigid eating a bit.  I was gluten, dairy, egg and legume.  What I was going to eat was really stressing me out.  It was really a challenge to keep shopping for and cooking appropriate meals.  I'm adding some bread (all natural, no oils or preservatives) at lunch for a veggie sandwich.  I also added some beans to eat with rice.  I actually feel better as I have more energy.  I really want to focus on low to no saturated fat, as Dr. Swank prescribed for his patients.  There is a great program created by Dr. McDougall, who is continuing Dr. Swank's work. You can heck it out here:  http://drmcdougall.com/free.html


It's time to begin thinking about going back to work.  Remember that I'm a teacher and have been off for the summer.  I'm always happy to go back in September, as I'm usually ready to get busy and have a routine again.  It's more bitter-sweet this year.  It's nice knowing that if I don't feel well, I can relax a bit and not have to worry about the "what if's" of the disease (what if my legs give out while walking down the hall at school).  I know, I need to stop worrying about "what if's".  They'll make me crazy.