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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

  • Legsonstrike
    3 months ago

    It is so hard to find a quality provider who will listen and stop looking at your MRI for things that can’t be seen by anyone but us!! It’s so frustrating but some day I feel like I’ll find the right MS SPECIALIST and we can get on the right track and be able to communicate more openly and stop blaming everything on things you can’t explain to me!!

  • Dianne Scott moderator author
    3 months ago

    Hi @legsonstrike,
    Frustrating indeed.. I so hope that you find an effective provider in the very near future. Thank you for reading and sharing.. Hang in there.
    Best wishes to you,
    Dianne♡

  • Nomdeplume
    6 months ago

    How does the song go? “Climb every mountain…forge every stream”…? Lol!!

    Oh, Dianne, I am so glad to hear that you found a good one!! I love happy endings.

    It is a painful reality that so many of us have to endure substandard care. I have the good fortune of being around lots of doctors where I live, but I STILL had to go through FIVE before getting to the one I have now. I learned a lot along the way, and I don’t like to think about what I paid, with respect to my MS, by not having better care sooner.

    I’ll give you a couple of highlights of my not-so-stellar docs: About 7 years ago, one doc [Harvard faculty no-less] told me that the only treatment option I really had was chemo (cytoxan). Her highly-reputed NP further said that it was “no big deal” and scheduled an infusion. I couldn’t go through with it because my instincts said this wasn’t right. Fast forward to my current doc, she said that, “You definitely don’t need chemo. You have a classic spastic gait, and the 5 mg of baclofen is doing nothing for you. The therapeutic dose starts at 70mg so we need to increase that. Oh, and you’re Vitamin D level is 10 so we need to supplement that. (It was never checked before.) She also set me up with PT, OT, and a physiatrist for my spasticity (I had never been to ANY of these specialists before). Whenever I see my former Harvard professor doc on tv as an MS “expert,” I just cringe!! I am so glad that I moved on and that better options exist! 🙂

  • Dianne Scott moderator author
    3 months ago

    What an experience, @marieantoinette, and yet, so many can identify unfortunately. I, too, am glad that you moved on and that better options exist and hope that you’ve found (or find) one of them. Thanks so much for reading and sharing..
    Best wishes to you,
    Dianne♡

  • dgerbing
    6 months ago

    Like they know nothing???

  • Dianne Scott moderator author
    3 months ago

    It is so very unfortunate, @dgerbing.. I hope you have or find one of the ‘good’ ones.. Hang in there.
    Best,
    Dianne ♡

  • dgerbing
    6 months ago

    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. Sounds loike my MS DR issue

  • jensequitur
    8 months ago

    I had a general neurologist who initially diagnosed me, but was clueless about the specific symptoms I was having. The final straw was the clonus – he had no idea as to how to treat it. What aggravates me is that clonus reinforces bad connections between axons – leaving the condition untreated made the next attack worse. He was actively doing me damage by failing to treat me appropriately. I eventually switched to an MS specialist over in Dallas (the UTSW MS Clinic) and immediately got on Keppra.

  • Dianne Scott moderator author
    3 months ago

    My goodness, @jensequitur! So distressing to hear and definitely to experience and I pray you’ve found an effective provider to treat you. I wish you the best.. Take care and hang in there!
    Warmly,
    Dianne ♡

  • 21grandkids
    8 months ago

    Your story sounds like mine. Right now my doctor doesn’t listen to me and my symptoms. He States that I am too old for medication and there is nothing to do. I am frustrated.

  • Dianne Scott moderator author
    8 months ago

    That is so very disappointing, @21grandkids.
    I hope that you can find another specialist to dispel what your current provider has told you. I wish you the best on this MS.. Don’t Give Up!
    Thank you for reading my article and commenting
    Best,
    Dianne ♡

  • Julie
    8 months ago

    I have actually taken articles to my neurologist showing that the questions I have really are related to MS. Sometimes it feels like the patient leading the Dr.

  • Dianne Scott moderator author
    8 months ago

    Yep, @jlnewport.. Been there, done that too. Such a shame that patient has to be in that position. Be encouraged and don’t give up… If that’s what we have to do, we do it until for unless they get better or we find better.
    Thanks for reading and sharing!
    Warmly,
    Dianne ♡

  • Dianne Scott moderator author
    9 months ago

    Ahhhhh @lauraed613
    Yessss, you get it!
    The frustration of MS is definitely enough without the lackluster care of the providers in which we entrust our healthcare to.
    Thanks so much for reading my article and sharing your experience!

    Take care & wishing you the best,
    Dianne ♡

  • Dianne Scott moderator author
    9 months ago

    Ahhh @lauraed613,

    So yes…you get it! Frustratjon with MS is quite enough without the added stress of lackluster providers that we entrust our care to.

    Thanks for reading and sharing!

    Best,
    Dianne

  • Lauraed613
    9 months ago

    This! Thank you! I am very happy to know that I’m not the only one that hears this from my Doctor. Every time I tell him about a new symptom he will say it is the MS. Never explains anything. He also does not treat any of my symptoms! I am now on the lookout for a new doc.

  • Dianne Scott moderator author
    9 months ago

    Ahhhhh @lauraed613
    Yessss, you get it!
    The frustration of MS is definitely enough without the lackluster care of the providers in which we entrust our healthcare to.
    Thanks so much for reading my article and sharing your experience!

    Take care & wishing you the best,
    Dianne ♡

  • Dianne Scott moderator author
    9 months ago

    Ahhh @lauraed613,

    So yes…you get it! Frustratjon with MS is quite enough without the added stress of lackluster providers that we entrust our care to.

    Thanks for reading and sharing!

    Best,
    Dianne

  • Shirleymeeks
    9 months ago

    I’m sure the percentage of MS patients with neuros they don’t have confidence in is high. I’m on my third. My first was excellent, but we moved. I knew things about MS from researching than my next neurologist. My neurologist now is fair, but her PA and office staff is terrible. They’ve switched my file to someone else, called and told me my test showed no MS (I hadn’t had a test, and I know I have MS), lost MRI results, etc. I’m now looking for a new specialist. So discouraging. In my opinion, these new, young neurologists are not as knowledgeable as the older doctors. MS patients should not have to deal with more uncertainty.

  • Dianne Scott moderator author
    9 months ago

    Hi @shirleymeeks!
    It’s definitely an added frustration to deal with poor care while struggling with MS. I hope you’re doctors improve or you’re able to find one like the one you lost when you relocated.
    Thank you for reading and sharing your experience!
    Best wishes,
    Dianne ♡

  • LeeAnn
    10 months 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 moderator author
    9 months ago

    Hello @leeann,
    You’re outlook mirrors mine! Thank you for reading and commenting.. Keep fighting and winning!
    Tare care,
    Dianne ♡

  • Dianne Scott moderator author
    10 months 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
    10 months ago

    Thank you Dianne.

    LeeAnn

  • Blondww
    10 months 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!

  • Nomdeplume
    5 months ago

    @blondww
    Hi, I agree we should have a database of MS doctors with feedback, positive or negative, from patients!

  • Dianne Scott moderator author
    9 months ago

    Greetings @blondww ..
    The key was in visiting the neuro that I was referred to.. and he happened to be just as he was recommto be otherwise I’d STILL be searching- or STILL receiving mmediocre care. I hope you’re able to find a capable specialist sooner than later..
    Thanks much for reading and sharing!
    Wishing you the best,
    Dianne ♡

  • Scotto
    10 months 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.

  • Dianne Scott moderator author
    9 months ago

    @scotto

    How awful your experience and how true your sentiment relative to some providers guessing.
    I hope things are or get better for you.

    Thanks so much for reading and sharing.

    Be encouraged,
    Dianne ♡

  • Suze
    10 months 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!

  • Dianne Scott moderator author
    9 months ago

    Wow @suze !

    It’s wonderful that you found a great provider …it’s awesome actually. The fact that you feel empowered after your appointments is even better!
    Good for you.. we deserve quality care!.

    I appreciate your sharing with us!

    Best wishes,
    Dianne ♡

  • nancycook
    9 months ago

    Where is your doctor? I live near Chicago and looking for a ms specialist. I was diagnosed at Mayo Clinic in Minnesota

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