Quality Providers + Quality Service = Quality Of Life

Me: Why am I having seizures?

Neuro: They come from the MS.

Me: I feel like my symptoms are worsening and that I have even developed new ones, yet there’s no change on my MRI.

Neuro: That’s MS. We’ll keep an eye on it.

Me: The last several nights, I’ve felt ‘jumping’ inside of my upper arm. It doesn’t hurt, but is very bothersome and has even awakened me.

Neuro: Yes, that’s due to MS.

*****

Enduring poor care

After being diagnosed with MS in 2007, the above scenarios are just a few examples out of a myriad of others that I have had the displeasure of experiencing throughout the years with my neurologist. With there being limited MS specialists local to me outside of this particular practice coupled with my becoming complacent since I didn’t want to start over or travel out of town anyway, I have endured scant explanations, half-hearted recommendations, incredibly rushed appointments, inadequate office notes, lackluster follow through, poor bedside manner, etc. Actually, it didn’t begin quite this bad, but as the practice grew, the service became more and more ineffectual. I have, through my communications with them, detected less than optimal concern, responsiveness, and competency.

Being our own best advocate

Sometimes, even doctors who may be dealing with their own personal biases, problems, issues, or who lack professionalism, or even ineptitude can let you down. My uncle, a medical doctor himself, advises that we must always be our own best advocate and encouraged me to seek a second opinion relative to my care. There were also the words of my late grandfather who used to say, “Do the best you can until you can do better.” These key pieces of wisdom in addition to a round of seizures where I received the perfunctory, “It’s the MS,” and a prescription for an anticonvulsant used to treat seizures led me to an appointment with a MS specialist who is second to none.

*****

Me: Why am I having seizures?

(New) Neuro: In reviewing your EEG, there were abnormalities consistent with…

Me: I feel like my symptoms are worsening and I have even developed new ones, yet there’s no change on my MRI.

(New) Neuro: Because at this point, after a review of your records, history and scans, it is clear to me that you have entered the Secondary Progressive Stage of MS which means…

Me: The last several nights, I’ve felt ‘jumping’ inside of my upper arm. It doesn’t hurt, but is very bothersome and has even awakened me.

(New) Neuro: Ahhh, that’d be called fasciculations (twitching) and for that, and the itching and the burning in your legs, we can try Gabapentin

*****

Not this time

On a beautiful, sunny, (cold!) day, my aide drove my mother and I to my MS specialist’s appointment 45 minutes away. We spent an hour and a half receiving answers, clarification, recommendations, education, suggestions, and advisement in the most unhurried, knowledgeable, compassionate, and understanding manner. So many times, I’ve left my regular appointments frustrated and left to look to my own research for answers. But not this time.

Finding relief in the truth

I left knowing ‘stuff’ and it feels really, really good. I feel like I did when I was initially diagnosed with multiple sclerosis. I’d known something was wrong for so long, but no one got it… and then I was incorrectly diagnosed with Benign Positional Vertigo. When someone finally did get it, and I was diagnosed – correctly – I didn’t have time to be sad or worried or scared because I was so relieved to finally know what was going on. I felt like knowing would help me to learn how to deal with my circumstances.

A clearer picture

This new provider has helped me to rekindle that same feeling. How refreshing! I’m not happy that I’ve entered the Secondary Progressive stage… I’m not happy that I have MS at all… But I’m happy that I have a clearer picture of what’s going on inside of me so that, again, I can learn to deal with my newer circumstances. I’m happy to have a doctor that is a complete advantage to my healthcare team.

It took a quality provider to give quality service which can ultimately enhance my quality of life.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • LeeAnn
    4 weeks ago

    I felt the same way. When I finally was diagnosed with MS I was so relieved that I was actually happy! I messed around with several neurologists for about 12 years before I finally found one that said I definitely have MS. I had my first MRI in 1989 and the neurologist at that time said that there was a spot on the MRI that was suspect of MS. He did a spinal and it showed nothing but he told me that if I had any more problems to see a neurologist again and have it checked.

    I don’t let MS get me down, I just deal with it and live life as best as I can. The worst thing you can do is let it get you down.

  • Dianne Scott author
    4 weeks ago

    Hi @leeann

    Thanks for reading and commenting! You’re outlook on the journey with MS mirrors mine! Continue to be encouraging and an encouragement!
    Best,
    Dianne ♡

  • LeeAnn
    4 weeks ago

    Thank you Dianne.

    LeeAnn

  • Blondww
    4 weeks ago

    I felt like I was reading my own story. I cried. So, what was the key in finding that better neuro? I’ve been through 6 in 7 years! Still not there. I’m convinced no neuro believes in anything but giving more and more drugs with no other tools! My liver went into failure from the drugs 2 yrs ago. I’m trying to avoid putting poisons in my body. I am on my own as too many of us are. There should be a central database of MS doctors for patients to exchange info about good ones(not sponsored by a drug company). We as patients should be pushing these neuros to do better!

  • Scotto
    4 weeks ago

    It’ frustrating being misdiagnosed. My first problem of facial numbness was diagnosed as my wisdom teeth were pressing on my facial nerves. Teeth out, still numb for a few months. ” Oh, it takes time for the pressure from inflammation to go away.” A lot of exacerbation from MS also clear up in time.
    The next was my whole left side went numb, which was diagnosed as a back problem. PT gave no relief. Finally had an MRI showing lesions that were consistent with MS.
    After I moved south, I had muscle spasms in my neck and face that triggered every time I tried to move my head. They made me look like some monster when they struck. It was the only pain that I could call a 10. I talked my PCP and talked her into a treatment of prednisone. An hour after the first 10 pill dose, the cramping stopped. When I went to see the leading MS doctor in the area, he said that the spasming was something else. He left. Te spasming happened again and I called my new neurologist who prescribed prednisone right away and the spasms stopped.
    Even those that are suppose to know only guess at times and don’t actually listen to you.

  • Suze
    1 month ago

    Thank you for the article, Dianne! This is such an important subject. Living in New Mexico, my choices for neurologists are slim, especially MS specialists. I had to travel three hours to UNM. Each time I went, I heard the same thing…. “it’s the MS, and there’s not much we can do. You’re secondary progressive now.” I would leave the appointment feeling defeated!

    I decided to search for a doctor that was an MS specialist, and a pro-active one. I now travel to Denver to the Rocky Mountain MS Center, and I have found a wonderful, caring doctor that is very aggressive with treatments. Now I leave my appointments feeling empowered!

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