Sunday, March 14, 2010

Here's where I start

Since this is my first blog, I suppose I should give you some background about me. I am 36, married and a mother of 4 daughters. I was a average healthy 26 yr old woman in 2000 living in NJ with hubby and daughters when I started seeing double and my balance was WAY off. I am stubborn with myself, everyone else was always more important so I didn't complain or worry about goin to the dr. I mean if I had a headache I took a nap, but if one of the kids felt bad it was time to get to the bottom of it. Well finally after about a month of this double vision I went to the dr. With an odd look on his face he told me he wanted to admit me for more tests. I know you don't get admitted for 'testing' so I told him to tell me what he was thinking or I was going home. He grabbed my toes and pushed my foot straight with slight force and when he did my foot began to shake uncontrolably. He said that isn't normal and I think you have Multiple Sclerosis. I didn't know what that was but I knew I didn't want any part of it so I disagreed and told him I wanted to go home. Please get me disconnected so I can go I asked.
I go home and called my parents, who are in Pittsburgh, PA. Hysterical I tried to explain what was going on. I ended up returning to the ER and getting admitted for a 5 day run of steroids. Now I'm feeling great and just know that dr was wrong so I call my cousin, Dr. Gates, he tells me to go to the neuro clinic in Pittsburgh for a second opinion. I mean this was shortly after Montel Williams went public with his bout and he said it took years for dr's to diagnose him, and I get diagnosed the first time I see someone. Yep, the dr's were wrong about me. A month later I go the the neuro clinic in Pittsburgh and they tell me it's definately MS, but it's manageable. That settles it, I'm moving back to PA. I took their injections for 7 yrs and in that time I progressively got worse, and consistently too. I mean every year in Jan or Feb I was on IV steroids. That just didn't seem right to me so I finally made the decision that the injections weren't doing their job and I quit. I began to do research and find things out for myself. If the injections were supposed to slow it down and I wasn't EVER feelin good then maybe it's the wrong course for me. Right? I thought so. I began to take lead in my care and stop following. I read books and the comonality in these books was all natural. I did this for 2 yrs and it helped some but my legs still got worse. I'm sure part of that was my fault, I did the diet, vitamins and supplements as well as the Candida killing thing but the exercise was just not as frontline as it should be so the consequence of that is week legs. Today a symptomatic drug has been approved for the first time and I have anxiously awaited its arrival for 2 yrs. Fampridine-SR is here! Of course they changed the name to Ampyra but I'm gonna try it. I thought since I planned to try this you might enjoy the ride with me. For those of you who don't know what Ampyra is let me explain. It is a drug that has been experimented on for nearly 30 yrs for its effects on MS. It is said to help speed the walking. I call it a jumper or a filler, depending on the mood i'm in. As I understand this med it is to fill the gaps in the myelin to allow the signals to go from the brain to where it's supposed to go without shorting out along the way. Jumper the holes or filling the holes. I am starting this med sometime this week and I am very nervous because the biggest side effect is seizures. Now they don't just come from taking the med but they come from messing up the timing of taking the med. Here's what I mean, it is a slow release med so I MUST take it diligently every 12 hrs. This does not mean every 12.5 hours then 11.5 to match, it means every 12 hrs. I have talked with my girls and they are on alert that if my alarm goes off to take it, get me and give it to me immediately! My neuro says I will know within 3-5 days if this is going to work for me. So here's what I would like from any follower of this blog, prayer and support. And occasionally nudge me to exercise. Thanks for reading and I'll try to post daily


  1. Well after reading your story I will truly keep you in my prayers and I beleave in my heart that all will be well with you.. And don't worry about getting a nudge to exercise I will be asking you that question often..LOL Love ya Sam.. KellZ

  2. Well, I know most of your story - I will keep reading your blogs...I have to give it to you and the girls - y'all do the damn thing, always! I guess when its your lifestyle, they are used to everything - I am concerned with the seizures.

  3. I am too cuz, but I beleive with the support of those around me I can be on point with it. Jus pray for me! and anyone on this new med.

  4. hey!

    Let me known how the medication works out for u...we can follow each other's stories...I go to my doctor on 3/23! I'm hoping that he will prescribe it for me and not give me any hassle.

  5. MS does not have me!March 16, 2010 at 12:23 PM

    Good luck, I know some doctors are a pain. Mine is great he gives me whatever I want to try.