Not taking my Ampyra anymore?

Totally Random Thoughts:

I’m considering not taking my Ampyra anymore. Any thoughts?

I sometimes feel like I would walk better if I just tried harder. Maybe concentrated more. If I were to gain some weight I wouldn’t be so easy to blow off balance.

Your thoughts:

Love, marriage and MS: “In sickness and in health”, takes on a whole new meaning.

Your thoughts:

MS : Re-entering the Atmosphere!

Re-entering the work-force is like re-entering the atmosphere, and I’m going in like Sandra Bullock in the movie “Gravity”

“Gravity” Movie Trailer

It’s violent and unstable; her shuttle burns up and falls apart all around her. She’s not sure if she’s gonna make it, but, her only choice is… Well, it IS a movie, but that pretty much sums it up.

Back in my real world, I’ve got a JOB! I haven’t been this excited about having a job since I was sixteen and one day. That’s when I began stalking the manager of our local grocery store, “Big Bear”. He made the mistake of telling me that I’d have to be 16, and I WAS.

I can’t finish this post now, or do anything else because, I have a job:) That means its 5 minutes til 8 and I have to go to bed at 8. Why, because I need to be up at 4 to practice mindfulness meditation for 30 minutes, stretch (with a teeny bit of yoga) , dress, have a muffin with tea, take my Tecfidera and Ampyra, leave the house at 6. Work til 9, am home by 9:30, big breakfast at 10 and sleep at 11. Wake at 12,  groggy til 1, leave for work again at 1:30. Work til 4, gym by 4:30, exercise bike for 30 minutes, leave by 5:30, home by 6, dinner at 7, take Tecfidera and Ampyra, shower and bed by 8.

BOY, I want to finish this, but I can’t. I’ve got SO much more to tell you :)Like: Why now? What have my doctors said? How much have I revealed about my MS?

Please come back soon:)

COMMENTS: What do you think my job is?

Hints: Must leave the house and be physical (no stay at home-computer work), must engage people, love kids, must require few hours(part-time), relatively low stress.

I’m a Neurologists Nightmare!

For 10 years now, I’ve seen two Neurologists; one in the mid-west, one on the east coast. The Neurologists near me just don’t know as much about MS. Here’s the problem: both of my current Neurologists are at major teaching hospitals, and both are heads of Neurology at those hospitals. I am nowhere near a teaching hospital where I live now. This takes me from the expertise of an “Academic MS Specialist” who see’s thousands of MS patients; to a “Non-Academic MS Specialist” who see’s only hundred’s. Which one would you rather have?

I want my Neurologist to respect everything that I bring to the table. Be able and willing to explain everything so that I understand it, and then…back the hell up! Give me the time and space to do my own research, considering my options.

Maybe I’m a bit of a nightmare, but I’ve got a GREAT personality!

On my first visit to see my “new” Neurologist, I thought he was nice enough, friendly even; that’s a plus. Middle aged, and, this means I could have him for years. The down side of having Academic Specialist is that they are usually on the downside of their career. My mid-west Neurologist has been practicing medicine for 50 years! About half way through our interview, I mean… conversation; when things were going well, I ask the new guy, “Are you married, do you have children? How many? Do you live in the area?”

Hold on Buddy, keep your pants on! My husband’s in the room! I explained quickly that I’m not being fresh. I want to know these things because I need to know if you’re vested in this hospital, this area, and this life before I commit to you. I’ve been with one Neurologist for 10 years and the other for 15. THEY are not going anywhere; are you? His answers to all of my questions were satisfactory and now it gets sexy. They all want to get you naked as soon as they can. That’s our brain of course, so I agreed to the obligatory MRI.  I probably should have been more coy; you know, played hard to get. The problem is, when you’ve been doing this as long as I have, you lose all inhibition.

I listened to his “elevator spiel” on all the new medicines, and even said I would take one. I was looking at the floor, shaking my head NO, while my mouth was saying, “Yes”. He looked at my husband and said, “She’s a real handful…huh?” WHAT! Because I’m not jumping into bed with you? The medicine I had agreed to take was Ampyra; the walking pill. Ampyra is the only medication to date indicated as a treatment to improve walking in patients with MS. It arrived and sat on the kitchen counter for weeks. Like sex…he still had to wait until I was ready.  I was scheduled to see him in three months with a report. To my surprise, he called beforehand. He wanted to talk about my MRI, and how the new medicine was going. “Um…it’s not”, I say.

What I needed, I had gotten. A little space, and time to consider my options. A phone call and a little more coaxing at this point were perfect. It was like getting a box of chocolates! My other Neurologist never gave me chocolates.

After waiting a couple more weeks, I gave in and took the pill.

I can be a nightmare; but I’ve got a great personality!

Your Thoughts:

Have you ever felt like you knew more than your Neurologist?

Have you had a Neurologist tell you something about MS that you simply KNOW to not be true?