Talked to neuro, as promised. Admittedly, I jumped the gun a bit. I am doing GREAT, but I notice that I have limits.

It feels very reminiscent of when I was in the early stages of Relapse/Remitting. I can push it, but I pay.

Honestly, though, if this is as good as it gets, it’s nothing short of a miracle. I don’t even need a cane!

So I went back to swim today. I’m also still taking my morning meds - I do learn. So, I wake up, take a bath, get the kids ready, and we are off to the gym. As I said, I do learn, so today, I put my cane right outside the steps of the pool. The class was great, a bit harder than on Monday, but I did fine keeping up. After, as I swam my way to the steps, I prepared myself for the worst.

But as I stepped out of the pool, I felt nothing - or should I say everything! I was fine. Fine. I carried my cane into the locker room.

I put my cane on the bench and started to walk around. I was fine. I wasn’t wobbling or anything. I felt normal.

I started to cry as did all the women who were there on Monday. It was a miracle before our eyes.

I came home and called my husband. He told me to call my neurologist. He’s great - he always calls back the same day around 5:00. I left a message with his nurse at 12:30, and 5 minutes later, he called me back.

We were both speechless for some time. Then he said that, “In all my years, I have NEVER seen ANYONE with MS have this kind of reaction to any treatment.”

He said to give him a few days, and he would call me. It is hard for me to believe. The easy answer is a placebo effect. But anyone willful person who is disabled knows that one of the most frustrating things is that you can use every ounce of will and want in your soul to try and make your body move, and it won’t.

Out of all the things I have tried, water aerobics has been the ONLY thing that made my MS feel better. I haven’t been swimming in a year. Today, I went back to the gym. It was nice, they remembered me and my kids. I needed my cane, but it felt wonderful to be back in the water again.

Everything was fine. I had absolutely no problem in the water or keeping up.

Then, I got out. It was as if every single lesion was exacerbated - I barely had legs. It took me 20 minutes to get into the locker room, and another 30 sitting there trying to get my bearings. Of course, everyone was offering to help, but, “No, I’ll be fine, I’m just a little slow.”

I got us home. The MS symptoms subsided over the next 2 hours followed by 2 hours of fatigue. But then I felt good again.

I suppose it will take time to build up. I’ve been sedentary for so long.

Okay, i’ve had 3, yes three shots. I woke up this morning feeling GREAT! I was very alert, not sluggish at all. I skipped my morning meds: Lyrica; Baclofen; Tizanadine; Amphetamines.

We had a birthday party this afternoon, and I went with only my cane, and sat a lot!

About 6:00 pm, I felt it. I crapped out, and was in pain. I’ll just have to bite the bone until my nighttime meds.

Yeah! The Copaxone came today, but with no AutoJect… Hmmm… Deperately want to start, but too squeamish about needles.

My husband graciously offered to give it to me - the nurse 4 years ago showed him once… I graciously declined.

Instead, I called on my diabetic girlfriend, and she graciously drove 35 miles to show me how to give my wimpy sel a shot. Giggle. It wasn’t bad, but ewwwe, that burn. My girlfriend suggested that I use one of the pre-filled syringes and practice on an orange, then just use another. I laughed so hard. For those of you who don’t know, one month of Copaxone - 30 pre-filled syringes is almost $1400!

Anyway, though the thought of piercing myself with a sharp object made my skin crawl, the thought of a cure was stronger, and I successfully self-injected into my tummy.

Boy, I never thought I would love my post 2 kid- 1 c-section -later tummy sooo much! It sure came in handy today!

My neuro had some concerns such as getting an opportunistic infection like when Tysabri first hit the market. Opportunistic infections happen when you have like no immune system, and often, people on combo therapies are the doors that answer to that opportunity. He was also concerned that I hadn’t tolerated Copaxone very well the first time I was on it.

I told him, yes, but at that time, Copaxone was making me sicker than I was.

He was also concerned that there was no data for him to refer to. Teva, the makers of Copaxone, are currently doing a 4 year FDA study, but they aren’t even close to revealing any data. He said it was up to me, and I say YES!

So the chemotherapy they give SPMS patients is called Mitoxantrone, or Novatrone (brand.) You are only allowed a lifetime amount of 8 doses, and each dose is infused every 3 months.

It carries high risks such as heart failure (~1 in 500), and leukemia (~1 in 1,000,) in addition to all the wonderful common chemo side effects. It is considered a last resort option, and, thankfully, most people with MS don’t get that bad.

So the AP came out with a news release that in the UK, they did a study on 27 people, ALL with SPMS, and all on Novantrone. They gave them Copaxone in hopes that the “build up” of Copaxone would “buy” the patients more time after their chemo doses were out.

ALL of them were virtually symptom free within 3 weeks of starting the shots. In addition, they “banked” the rest of their chemo doses, and 3 years later, they are all virtually symptom free!

They also compared MRI’s after the patients were off the chemo and just on Copaxone with those taken prior to the chemo, and almost all the lesions had disappeared! I, of course called my neuro and spoke with him. He is skeptical, wants to reasearch it, and will get back to me.

Hello World! Welcome to the MS Blog. My name is Jill, and I would like to give you a little history about myself. On the 8th it will be my 31st birthday, and I am banking on it being a very good year… I should certainly have one coming.

I was diagnosed with Relapse Remitting Multiple Sclerosis in February of 2002, though I had my first documented exacerbation when I was 19.

I had a horrible neurologist, and was puy on Copaxone along with a multitude of other drugs. I did not react well to the Copaxone. I had all the rare side effects - and the common ones too. I had a falling out with my first neuro and stopped taking all MS meds. Basically, my primary doc took care of me, and would prescribe me steroids as needed. But my MS was progressing, and my primary doctor felt she could no longer manage my MS. I went to see another neuro who had NO bedside manner and made me cry. I asked my primary to find out who was the nicest and best neuro in town, and the same name kept coming up. I had to switch insurance carriers, and gave up my primary for my neuro. It was a match made in heaven with my neuro. He put me on Betaseron. I tolerated it well, but my MS was progressing rapidly.

I “traded” up from a manual wheelchair to an electric one. I knew I was going secondary progressive, and I knew that “pushing” myself would bring it on faster. I was looking at a difference of maybe a year.

But I had 2 small babies, and with the support of my husband, I chose to make the most of the meds available to mask my symptoms and live life to the fullest. The official diagnosis of secondary progessive came all too quickly. I was declining rapidly. Exactly one year ago this weekend, we were having dinner across the street at our neighbor’s house, and somewhere between the steak and cake, my legs just wouldn’t move. The hubby’s got my chair out of our garage, dusted it off, and made a makeshift ramp out of cardboard boxes and a baby gate. The steroids didn’t work, I lost control of my bladder, and by January of 2006, literally everyday I was progressing. I was told that chemo was my only option. That it would hopefully slow my progression and “buy” me a couple of years. I was told my only hope was a stem cell cure.

We couldn’t afford the vehicle modifications for my car, so, there I was, homebound with a 2 and 3 year old.

I could go on and on about what each of those days were like, not just for me, but my family as well. I also found that not only were there no resources for funding a lift and hand controls for my car, but there were very few resources for anything MS related. What recources that were out there were either out of date or limited, and I had to peacemeal ALL of it. My husband and I also saw the movie Robots. “See a need, fill a need!” And we did, and we are here!