Yikes!

I finished all of my testing before beginning Gilenya.  These included blood work and urinalysis, TB test and EKG.  I recently had an MRI and eye exams so I didn't have to do those over again.  Now I wait for the blood work to come back and to hear from my insurance and I can schedule the initial 6 hour appointment.

I'm curious to see how my chicken pox "test" came out.  I never had it as a child and was tested to see if I was immune prior to getting pregnant with my second child.  I wasn't immune so I was immunized against it.  If I'm not still immune I'll have to be immunized (and probably wait a bit- not sure how long) prior to beginning Gilenya.

On a not so good note, I believe I'm beginning an exacerbation.  On Friday I was having numbness in my fingers and toes.  Also weird tingling/numbness in my legs and more leg tiredness than usual.  Well, the finger and toe numbness has lessened, but the legs still don't feel good.  Figures that this happens right before the start of school and my going back to work.

If I still don't feel well tomorrow I'll have to call the doc and try to get in.  If I do need solu-medrol I think I'll have to wait to begin the Gilenya.  Great.....

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.

I've decided to change my blog.  I've decided that complaining about how I feel about having ms or about my symptoms at the moment don't make me feel any better.  In fact, I think it makes me feel worse.  I've been having quite a pity party the past few nights.... sitting up reading blogs about people struggling with their ms and feeling terribly sorry for myself.  That's finished.

I haven't talked too much about my diet.  I follow quite a strict diet, which makes me feel like I have some control over this disease.  I eat gluten, dairy, egg, and legume free.  I also eat very low fat.  I have read the research and truly feel that this is the best choice for me.  I also take quite a few supplements specific to helping heal my ms.

As I've spoken about in past blogs, I feel that the mind has a huge effect on the healing powers of the body.  I am currently reading George Jelinek's book Overcoming Multiple Sclerosis.  It has really inspired me to begin taking a close look at my emotional health and thought processes and their effects on my disease.  Dr. Jelinek feels that meditation is an important step in the healing process and as I have written in the past, this is something that I want to begin practicing daily.

So here it is.  My new blog.  I will report out on my food intake including daily menus (which I wish I had to look at when I was just starting out), supplements, and my progress with meditation and my new more positive attitude.  Thanks for reading!

The ms roller-coaster....

It's been a few weeks since I've posted so here's an update.  I now (finally) have my Avonex shipments set up and am taking the full dose of Avonex each week.  I did miss almost a week due to insurance issues which changed my injection day from Friday to Wednesday.  This actually works out better because I don't feel like garbage for the weekend.  The night of my first full dose I had chills (it was 90 degrees and humid) and I'm sure I had a fever.  I did feel better by morning and was able to work with no issues except for being very tired.  This didn't happen last week so maybe it was a one-time deal and I'll have smoother sailing with it from now on.

I am feeling better these past few days.  I still have some mild numbness in my right hand and the numbness/tingling in my feel is almost gone.  My legs do get a mild tingling from the waist down.  This comes and goes.  I have more energy lately which is nice.

Only a few more days of school and I am out for summer vacation.  This worries me a bit because I am typically pretty active with my two kids and want to be able to do things with them this summer, too.  I'll just take it one day at a time....