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....

Avonex

So I have finished my first four weeks on Avonex.  I did half doses so ease my body into the med.  Here's how I have reacted:

*I'm moody.  It comes and goes.  One minute I'm feeling optimistic and the next minute I feel like this ms is going to kick my butt.  I really don't like this.
*I have a rash on both my thighs.  Yup, about 2 inches all the way around the injection sites.  The doc is not too worried about it, and it seems to be getting better so we'll see.
*My legs ache.  This comes and goes throughout the week.  Not sure if it's the ms or the med.
*I think I'm more tired than before, especially a couple of days after the shot.

Well, that's about it.  Not too bad, I know.  I would really feel better about this med if the ms would just calm down.  I'm still getting new flare-ups.  A couple weeks before beginning the Avonex my feet got the numb/tingling thing.  I still have it, but it seems to have eased up on my insteps and is worse on the first 3 toes of each foot.  Lately my legs feel tired, also.  This scares me the most....

So I will try to stay optimistic, although it's difficult.  In a perfect world (well, we wouldn't have ms in a perfect world) but it would be good if I could just get symptom free and see how this Avonex will work for me.  In the past when I have gotten flare-ups, they were very minor and always cleared up.  I'm not sure what's different now.  I can't help but wonder if I am doing something different.  I'm eating better, so it's not that.  Could it be the stress of it all?  Any flare-up adds stress to our lives, so is it a viscous cycle...stress making the ms worse and the worse ms making us stressed?  Although I've dabbled in meditation, maybe it's time to really be serious about it.  Anything is worth a try....

Your body believes everything your mind tells it...

I truly believe this.  I think we can control a lot of what goes on in our bodies with our minds.  I was reminded of this when I was reading over a site that I recently found.  Here it is:

http://intelligentguidetoms.wordpress.com/

The creator of the site, Rebecca Hoover, has been living (and living well) with ms for many years.  She feels that diet, exercise and a positive attitude have been the key in keeping herself attack free for much of her life.  I stumbled onto some interesting research that found that people who resigned themselves to the fact that they would be limited due to their ms and worried excessively about their futures actually suffered with more physical issues than people who were optimistic about their futures.  Here's the article:

http://intelligentguidetoms.wordpress.com/category/psychology-and-multiple-sclerosis/

Ok, I do try to be optimistic, but what person with ms isn't worried about the future?  I guess the key is to keep the worry at bay and to not let it interfere with your hopes and dreams.  I have been trying to practice this the past couple of days and it does seem to help my emotional state.  I try to practice positive self-talk and so when scary thoughts enter my mind (like "what if I can't dance with my sons at their weddings") I realize the harm that the thought can bring to me (emotionally and physically) and turn it around so I am telling myself "I will dance at my son's weddings".  I even picture a healthy, energetic me having a great time.

We may not be able to cure ms, but we can beat it.  I will not lay down to this disease.  I will fight it every step of the way because it is not welcome here!

I did it!!!

That's right.  I did my first injection of Avonex.  Here's how it went....

I got a call from Biogen wanting to set up my delivery of Avonex.  I am still in the waiting process, but got a free month supply so that was being sent to me.  The representative asked if I needed a nurse to come and show me how to do the injection.  She caught me off guard, which was good, and I just "sucked it up" as my son would say and said, "yes".  The nurse contacted me and was able to come on Friday afternoon, which is when I thought it would be best to do the injection.  She was great.  She spent about an hour with me and it was finally time to do the injection.  She kept saying, "just do it... go ahead and do it..... just do it"..... and I did!  It really didn't hurt at all.  The needle went in easily and it was truly no big deal.

My doctor only wants me to do half a dose for the first 4 weeks so my body gets used to the med.  It did make me tired and gave me a headache, even with Alleve.  Nothing I can't manage.  I really didn't feel myself until about 24 hours after the injection.  Now I'm wondering if Thursday would be best for the injection.  I hate to spent half my weekend feeling poorly.  I think I'll give it a couple of weeks and see how I feel.

Stick myself with a needle where?

Well, it's almost time to begin long term treatment for the ms.  My doc feels that Avonex is the best treatment for me.  I did some research and I agree that Avonex seems like the way to go.  BUT..... the needle.  I REALLY don't like needles.  I know, I know.  Who does like needles?  No one.  But I REALLY DON'T like needles!  I can't even watch a nurse give me an immunization let alone give myself a shot.... in the leg.

My doctor agreed to let me come into the office and so the nurses could give me the shot and I thankfully agreed, but it's not sitting well with me for two reasons.  First, I'm a strong girl.  I always have been.  Not 'being able' to do this makes me feel weak.  Second, lack of control.  Now, if you know me, you know that I LOVE my control!  I would like to get the shot on Friday after work so I can get over the flu-like symptoms (if I get any) by Saturday.  If I get the shot at the office it would have to me mid week and that makes me nervous that I won't feel well for work the next day.

Right now I'm waiting for insurance approval and a NY state script approval.  After that delivery will be set up and once it's delivered, I notify the nurse and let her know I'm ready.  I know I should just buck up and do it myself, but the thought if it totally stresses me out!  I still have a week or two to decide so I'll continue to think (worry) about it and hopefully I'll make the best choice for me.

More background....

By the time I saw my new neuro for the first time I had weakness in my legs, especially my right leg.  I also continued to have balance difficulties so between the two, my gait was slow.  I also continued to have blurred vision and slight vertigo, pain and tingling in the base of my neck, and numbness in my hands and right arm.  I was scared.  My doc took a lot of time with me, listening, answering questions, and performing various neurological assessments.  I truly felt like I was in good hands.

Doc ordered and MRI and more blood work.  Since my vitamin D level (from my primary visit) was 30, he ordered me a script of vit D.  He explained the benefits of solu-medrol (IV steroids) to this significant attack and suggested I begin a 3-day treatment.  I'll discuss my experience with solu-medrol another day....

So now here I am.  The solu-medrol did help, but not totally relieve, my current attack.  The left-over symptoms seem to be continuing to clear up.  My right hand still has a little bit of numbness, which seems to come and go throughout the day.  I had been getting "hot spots" on my legs and back, which are mostly gone.  A couple days ago I got a new symptom- numbness in the feet.  This is brand new for me and I'm really hoping it begins to clear up soon.  Only time will tell....

General Backround~

This current "attack" began about the third week in January.  About one week prior I was sick.  No, I mean SICK.  I don't think I have ever been so sick in my life.  I don't know if it was a stomach bug or bad pepperoni on the pizza that I ate, but something really got me.  I was literally on the couch for 2 days.  This current attack began about a week later.

It all began with numbness in my right hand and down my forearm.  My right cheek and lips was also numb.  What's really odd is that the skin on my lips and on my right hand was also very dry, with my lips peeling.  I also had coordination and strength difficulties in my right hand/arm.  This lasted for several weeks and I began feeling tingling and pain at the base of my neck.  If I got too tired my neck really ached, and it only felt better if I sat back and rested it.  Soon after this my right leg got weak until I felt weakness in both legs, making it a chore to walk.  My balance was also off at this time and I nearly fell down the stairs carrying the laundry basket to the basement.  Finally, the ocular neuritis occurred along with vertigo.

It seemed like each day for the end of January to the end of February I woke up worse.  I was really frightened that soon I wouldn't be able to get up at all.

Now, here's the tricky part.  Remember that my MS has been quiet for 18 years.  My last trip to the neurologist for some sensory issues (maybe 15 years ago?) ended with him telling me I was "too good" for any treatment and to call if more symptoms occurred.  Well, things came and went, but nothing that lasted and nothing major.  Tingling here, a bit of blurry vision there.  All manageable.  So, here I am now, in the midst of a major attack, and the neoro office I used to go to no longer exists.  "What?  What about my records? What about my MRI"?  Gone... all of it.  Well what am I supposed to do, now?

I need to find a new neuro.  Where do I begin?  On the internet, of course.  I began Googling the term 'neurologists' and different cities/towns around me.  Some looked like they were 15...they were out.  Some looked 85...also out.  Then I found him.  An MS specialist voted one of the top doctors in the area.  Upon more investigation I found he's very involved in MS research and the best ways to treat MS.  I've found my man.

So I call the office to make an appointment.  I was told that I need a referral from my primary reviewing the MS and that the doctor would then review my info and decide if he would accept me as a patient.  Seriously? I work so hard to find the perfect doctor and he may reject me?  It figures.

So my next call was to my primary doctor.  I asked for them to fill out a referral form so I could get an appt with the neuro.  The nurse who called me back the next day said, "MS"?, there's nothing in your file that says you have MS.  WHAT?  She gave me a hard time because the handful of times I went to see her, mostly for sinus infections, I never talked about the MS.  Well, it wasn't bothering me. When I saw my old doctor in the practice (before she moved to Canada) I talked with her about it.  It was several years ago, but don't you people keep this info?  Apparently not, because my MS was news to her.  Unbelievable.

The nurse made an appointment for me (luckily only 2 days later) for a full physical including blood work.  My primary took my info and the referral was sent.  Now my fingers were crossed that I would be accepted by this MS specialist.  My symptoms continued to worsen each day and to say the least I was terrified.

A couple of days later I got the call.  I was in and they wanted to schedule an appointment.  There was an opening only days away.  Thank God....