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….why do I ALWAYS feel the way I do ….

Ok, I was diagnosed almost 2 years ago with RRMS, I was with the same neurologist the whole time until my last visit 3 months ago, I was basically “lost in the system” as my pcp called it.

Anyways today was my first appointment with the new neuro, as usual I was a little nervous (idk why but I get that way anytime I have a doctors appointment) but really just praying I found a Dr that is actually informative, caring, and actually listens to me and doesn’t rush me out of the room!…. This neurologist ACTUALLY listened and didn’t basically tell me I’m not “progressed enough” to be feeling chronic fatigue, chronic pain and weakness, etc. Etc. Etc…. He LISTENED and explained things to me and answered a few questions I’ve had for 2 years now! The only thing is…. He couldn’t answer my question about where my lesions on my brain were located as to if they have anything to do with the symptoms I experience just about every single day (he didn’t have my MRIs because “someone” was supposed to fax them but didn’t, maybe that’s why?) BUT he said the SAME thing the old neuro said, “you can’t specifically tell if the location of the lesion is causing symptoms”…. I don’t know or talk to many people who do have ms but the few I have, have said there neurologist said “so and so you are having a lot of left sided weakness due to the location of this or that lesion”…. Anyways, that has been a question I’ve had for forever and I’m dying for an answer, I just need to know because there are SO MANY unanswered questions already about this MonSter…. So I want to know everything that can be answered, as scary as answers can be sometimes there is something comforting about being able to KNOW WHY…

Has ANYONE else experienced this or something similar?….

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  • Nancy W
    3 years ago

    Hi,Amanda. I just saw my neurologist last week. I have an MR I every 3 years. The report says I have “many” lesions. But it is unchanged from when I was diagnosed 13 years ago. I don’t get contrast anymore because I think it gives me pseudo exacerbation. Most of my lesions are in my occipital cortex. She said they could affect the speed of my visual processing, but I probably wouldn’t notice it because we process things we see very quickly.

  • itasara
    3 years ago

    Hi Amanda, Glad to hear you found a new neurologist that you like. I think you are fortunate because it is not always easy to find one that gels with you. I have been with my neurologist for almost 16 years now. In all honesty, he isn’t my type- kind of non communicative. I can ask him questions, but I usually don’t. I find most of my answers either on the web or in MS chat groups or in webinars provided by my medication provider or the MS society. I have no idea how many lesions I have. I had an MRI to diagnose MS in 2005 and haven’t had one since, not yet. Maybe this will be the year. My neuro says I am very stable, and feels the medication is working, so what is the point?I kind of agree with him. When I was first diagnosied I was told I had many lesions, probably old ones, so I may have had MS a long time, although I really had no idea. It was the two spinal lesions that caused me to have Transverse Myelitis that was my major symptom. I know from some of my groups that people are considered how many lesions they have and if the are active or not. But I have also read and heard that you can have a relapse and no lesions will be active on the MRI and vice verse. A neurologist told me on a phone weibinar that the society that regulates neurologists recommends an MRI every year or even every 6 months. I question why? My neurologist would not change my medication as long as I show no signs of major relapses or progression of the disease, So why have an MRI? They are very expensive. Insurance pays most, but the more people that have unecessary MRI’s the more our insurance costs will go up. Someone makes a lot of money do this every year. That neurologist on the phone told me that they can see if there are new lesions or if some have disappeared, etc. But I’m still not sure why that should make a difference other than my own curiosity. I would be happy to know that some of my lesions are gone but there are no guarantees. I am not an expert so this is just my opinion. There are some new MRI procedures that may view lesions in the grey matter where they have been seen in the past with MRI, but now sure if those machines are readily available and I still don’t know what difference that would make. The only thing that could make a difference with MRI maybe if one takes a medication that has symptoms or effects that are dangerous for the brain and you have more symptoms. To try another medication an MRI won’t tell you which one. Some of the newer ones may require an MRI, but for now I am staying away from anything controversial with known serious side effects.

  • Nobu
    3 years ago

    Amanda – I have MS for 16 years, and only recently asked my MS doc about how many brain lesions. She told me she did not recall but the issue is not how many lesions but how am I doing, and I have been pretty stable for many years. And further, my spine lesions seem to have more of am impact so far – but it took several years for me to find that out. There will always be questions that at this time can’t be answered. But you seem to have found a good doc – so keep seeing the new doc and keep trying to maintain or improve your health as best you can.

  • Devin Garlit moderator
    3 years ago

    Hi Amanda! I’m glad to hear you’ve moved on to a doctor you like more. If there is one piece of advice I like to give newly diagnosed it’s that you should never settle for a doctor, In my 16 years with MS, I’ve switched doctor’s numerous times. Usually because they just couldn’t help me anymore. It’s unfortunate, but with MS, there are a lot of doctor’s that aren’t always up on what’s new. It’s a disease where new information and medications are constantly coming out, so it can be hard to keep up.

    As for the location of your lesions corresponding to specific symptoms, some people can give a guess but no one can say for certain. The brain and nervous system is a pretty complicated place. Not every MRI machine is as powerful as the next either, so there can be small lesions in areas that may not always get picked up. But I wouldn’t worry about, the biggest part of monitoring with MRIs is to keep checking if new ones or present, not necessarily where they are at.

  • DonnaFA moderator
    3 years ago

    Hi Amanda! Thanks for sharing your story and questions with us. It’s wonderful that you have found a new doctor who makes you feel heard.

    It’s understandable that you are feeling uncertain because his answer called back to your previous doctor, and a time when you did not feel heard. It might be helpful to start a list of concerns you want to address for your next visit.

    You may want to read Do MRIs Paint an Accurate Picture both to put your mind at ease, and also to help you gather talking points for your next appointment.

    We’re glad you’re here! -All Best, Donna ( team)

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