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  • andiseals
     I was diagnosed with RRMS in Sep of 2015, So i'm still learning the roaps, lingo, meds, does and donts, all that good stuff.  
    ‚ÄčI've had 2 MRI's the first proving I in fact had MS although I was not knowledgful to what MS actually was at the time I was first informed of the news because it was not from a neurologist.
    Then when seeing the neurologist and being informed of what I was actually dealing with I never thought to ask how many lesions I had or if I was told I forgot.
    My second MRI proved I had 2 new small lesions in comparison to my first. Didn't stress too much finding that out because I mean, I've already got it right? So, lets change meds and fight this!
    After 2 months of being in between medicine and joining this website and learning a little more than I knew before I was curious to know "How many lesions did I actually have to begin with?"
    I call my neuro and ask the nurse and get told "Why would you wanna know that?" "Uh, because I'd just like to know for my own piece of mind and to keep my primary care dr up to date." "Well we will send your charts to your primary care dr"
    Primary care dr calls and says "your chart states that in comparison to you first MRI it says you have 2 new extremely small lesions."
    BIG HELP RIGHT?
    So I call the radiologist office that did the MRI and ask the question. The radiologist asks why I want it and I explain I've been given the run around and would just like it for my own piece of mind and he was baffeld I had such trouble getting the answer and then more shocked looking at my MRI. Before answering my question He stopped and asked. "How are you mam?" I told him I was fine and if he didn't know me personally he wouldnt know I had it unless I told him and I was greatful for that. He said "wow, I need a minute because there are really too many to count.." That caught me off gaurd thinking what? 20? He said "Mam there are roughly 100 lesions in this MRI and it is one of the more serious ones i've done Im so glad to hear how well youre doing and I wish you well."
     
    I'm a little shocked my neuro never mentioned 100 lesions ... I most definetly would have remembered that.
    So shocked that between that, his rude staff and being in between medicine for 2 months (for the lack of me being taken seriously with my symptoms) Im concidering switching neuros?
  • nancyd123
    Hi there,

    Your situation sounds similar to mine, I was diagnosed in Feb 2015 but didn't get on meds for a few months (and the first med I was put on didn't work, but that's a whole other story).

    Two things I've learned are: you absolutely need to be happy and comfortable with your neuro. YOU are the one with the disease and its lifelong so best to have someone you like and trust and feel comfortable asking questions. I'm surprised they found it odd that you were asking questions about your MRI. It's your brain! Of course you want to know what's happening with it!
    And the second thing is that the number and size of lesions aren't necessarily the most important thing. WHERE they are will determine how they affect you. I had a very tiny one on my medulla, which was quite serious because it affected my breathing, and a very large (like the size of half a grapefruit) on my frontal lobe which was less serious because it's not life threatening the way a small one affecting my breathing could be.

    But a good neuro will be happy to go through this with you and tell you what you could possibly expect from your lesions. Don't be afraid to go through a few neuro's till you find someone you click with. 

    Best of luck!
    Nancy
  • andiseals
    That's what I was thinking! It's my brain and Im the one that spent all the money on these MRI's and appointments and medicines so why such a big deal to make me out to look as if im being difficult for asking a question!
    ‚ÄčThe reason I got an MRI in the first place was because I went deaf in my left ear and my Ear Nose and Throat Dr ordered it thinking or more so hoping it was something else, even though he was not a neuro he knew enough to know I had MS and needed to go see a neuro. I saw my MRI in his office and it looked as if white spots all over maybe? but he didn''t explain anything other than one of the lesions was more than likely in a spot causing my hearing loss.
    My neuro on the other hand is very nice and knowledgeful although he is busy and talks faster than id like lol his staff is who is rude. BUT he has never showed me my MRI in his office. only talked with me and he has not talked about the locations of my lesions.
  • karlie90
    Wow 100+ I've  never thought to ask either, come to think of it. They only told me that  they're  all different  ages so most likely ms. It is a bit rough that you got the run around, I had something similar.  My mri results went back and forth between 3 Dr's because nobody wanted to tell me. Highly unprofessional,  but I guess I wouldn't  want to tell me either. 
  • andiseals
    Right? Who wants to be the bearer of bad news I guess but they're quick to get paid for it all... I'm giving it a bit longer and and a few more prayers.
  • MS_Navigator_Steph
    Hello andiseals,

    If you are considering switching neurologists you may want to use this link to search for an MS Care Provider. You can also call us at 1.800.344.4867 (M-F 7am-5pm MST) for a list of neurologists in your area.

    The National MS Society has MS Navigators available to answer your questions, offer support, and connect you with information about MS and local programs and services.  

    MS Navigator Stephanie
  • jaidesmom
    I'm new to all of this, but I've already learned to go get the results myself or I would have no information at all. My hospital has a website where I was able to read the written results of my MRI. My VEP results didn't show up there for some reason so I went to the hospital's medical records office and paid like $1 for a copy of the results. I also have my MRI on disc. And I can see all my bloodwork on an app I downloaded which explains everything too! 

    Im not patient enough to wait 2 months to see the neuro for results. Plus the one and only time I saw him he told me nothing and he was kind of a jerk- no bedside manner at all. But I've heard he's brilliant so I'm giving him another chance and telling myself he's so smart he's like Sheldon from the Big Bang theory lol.

     
  • kimberlyburdette
    I'm speachless!  That is absurd that your doctor wouldn't mention that to you!  I would def switch docs.  I thing 3/4 of the battle is having a great doc!  I FINALLY found mine...he is in Atlanta...I'm not sure where you are located but do research and find a neuro who specializes in MS for sure!  and read the reveiws on them...people/patients will let you know how their bed side manner is and if they take you seriously or not.  Good luck!