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?

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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?

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4 Comments

Filed under MS and Oral Medication, MS Drugs, Neurology

4 responses to “I’m a Neurologists Nightmare!

  1. Yes and yes. I have finally found one that does not scold me or huff or become so damn indifferent when I don’t immediately do cartwheels over another drug (or two) that they suggest–no…INSIST–is what I need. This guy (who is older and probably going to retire soon 😦 ) is very patient, waits for me to do my research, allows me to ask all sorts of questions. I’m 13 years in now, and menopausal, so i’m not pussyfooting around anymore! BTW I’m very nice, too 🙂

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  2. I don’t think you are the neurologist’s nightmare!!! This is as it should be…. you are a part of your medical care! You should research and debate and discuss before you decide to change your care or add/take away from your regimine. All in All, it is your body…. & your life….. Don’t stop questioning and seeking to gain more knowledge about what affects you and how YOUR body reacts. It’s not all the same for everyone. Yes, there is an average group, but even within that group, there are some differences!! Believe in yourself!

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  3. Hey Lish:) thanks for the support. I am a total believer in being one’s own advocate; and if we learned nothing else…we learned early to speak up!

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  4. HaHaHa!I know EXACTLY what you mean! If menopause is good for nothing else, it helps us take less ish(LOL)

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