Frightened To Ask

Sometimes the truth hurts.

“We get wise by asking questions, and even if these are not answered, we get wise, for a well-packed question carries its answer on its back as a snail carries its shell.” ~ James Stephens

When I visit my neurologist, I always have a list of topics I want to discuss. A few times it’s been about a new MS drug on the market. And other times it’s something simple like an exercise I saw in a magazine. We’ve talked about various subjects but they all pertain to me getting better or at the least maintaining my current baseline.

The visit usually follows the same routine. He asks me what is new. I tell him. We discuss it. He answers all of my questions and makes suggestions.

Next, he puts me through a series of test that measure different abilities. Then he compares the new results to my previous results. Sometimes it involves x-rays and counting lesions but that’s usually only twice a year.

Lastly, he writes me prescriptions if needed.

Out of all of that, the only thing that makes me nervous is the contrasting of my recent test to past test. Those assessments put me on edge because they reveal if I’m improving or regressing.

It’s crazy how much more I am involved in my health decisions now than I was in the past. My previous neurologist gave me little information. And I asked very few questions of him. I just figured since he didn’t say anything that implied everything was ok. Also, a part of me was scared to ask questions. I always wondered if the MS was advancing but I was so frightened to ask. So my doctor’s appointments became monotonous. The visits were more like a casual chat with an old friend than an official meeting with someone who was supposed to be helping me improve my health.

Luckily, my current neurologist is the total opposite of my former doctor. My present neurologist always tells me the truth. If he thinks I am getting worse, he lets me know. But it’s never in a harsh way. After he tells me, we always talk about it. Yes, sometimes I cry. And we work through that too. But the best thing is, with his lead, together we try to come up with solutions to stop any negative results from advancing.

I’m not going to lie; it hurts to hear when the disease is progressing in me. But I think knowing is better than not knowing. And it also allows me to be more proactive in managing symptoms and deficiencies. One of the main things I have learned over these years about living with MS is, never be too frightened to ask questions.

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

10 thoughts on “Frightened To Ask”

  1. Please thank your doctor! They need to know how much we value the open communication. And thank you – always – for sharing.

  2. Nicole, your willingness to speak openly about your challenges is a lesson to us all. That it is done in the context of still doing whatever you can in a positive way makes your honesty doubly meaningful.

  3. Nicole,
    It is wonderful to have a good relationship with your neurologist. My neurologist makes suggestions and allows me to make my decision. We both are totally honest with each other. Sometimes I have to brace myself when she gives it to me. But it must be given for me to make adjustments, if needed.
    Take good care!

  4. My MD used to be a neurologist. He has MS. He understands what having The Disease really means.

    He also knows there are no answers. The DMDs do nothing. Nobody has anything. Medical weed is OK and helps, and the exact type of weed you get matters because some kinds help more. He knows this because both he and his wife have neurological issues and each needs a different cannabis variety for specific issues. And that’s about it.

    But that’s life. And someone who merely listens and understands can be reassuring in its own way… Yeah, it sucks, but that’s life. We all have it. It sucks. But we’re in it together. And THAT’S what’s important. We’re in it together.

    1. Hello Robert Parker. Did your Dr tell you that DMD’s don’t help MS? I believe that. I stopped taking my DMD on my 50th birthday (Feb 19th) because I want to see if there’s a difference in how I feel. So far, I feel no different but perhaps maybe it will take a little longer to see a difference or maybe not. All I know, or think is, that the drug makers are getting richer and we’re not getting better. I realize that the DMD’s are only to help “manage” the MS, however, at this point, I’m sick of only managing my illness with false hope. Thoughts?

  5. I’m so glad that you have a good neurologist, as it’s very important to feel that support is genuine.

    I had an excellent one at my previous address, but since I’ve moved the support and the listening hasn’t been there. Hoping that the move to the US (from Wales) in September will yield the missing elements.

    Keep smiling and fighting the MonSter.

  6. Wow, what a great neurologist you’ve found, Nicole! You’re very blessed to have him on your team. Here there is only one doctor in the whole state who specializes in MS. And he’s horrid. I stopped seeing him 7 years ago. I stopped trusting all doctors. I’m on no medications and I can only assess how my diseases is progressing by noticing what I can no longer do that I could do a month ago.

    1. Please get back on a medication asap MS will destroy u if u do nothing I beg u get a nd and get on treatment I am on tecfidera pill form they also have s q meds . Every person I met who stopped treatment for some reason got worse and regretted decision . Ty, Judy boyskey

    1. That’s the way IV felt the past few visits with my Neo Dr he moved from Florida I was so Thankfull Becouse my Brain Stem issues My Middle Brain Stem Was Allmost Closed in 2000 He hasn’t yet addressed my Brain Stem Way I don’t Know. my MD Is not seeming too care long term it’s Allways oh Have you tried Pain Management I’ve tried them all it seems too many Shots & Dr Being cut Because under Exsper with dealing w Pain Then trowed out too the Wolf’s again Because being pushed By Government Insurance and I Worked 24 years as a CNA Muti Skilled Nurse Pushed & Pushed With Rude MD That Seems too look & Treat you as A Big Fat Social Sec #

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