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    I know you can only help a little.

    Hey, hi, hello!

    Thanks for taking the time to read this.

    First of all, I want to say that I am fully aware that this post is coming from a place of anxiety. I know I am asking you for a sort of reassurance that you can't really give, and I know the reason I'm asking is a product of anxiety. However, that doesn't seem to be stopping me.

    Second of all, I know that you can't provide me with a diagnosis or rule out a diagnosis. I think I am just venting/throwing stuff out there into the void for the sake of DOING something. I know there's nothing I can really get out of this but support, but I appreciate it nonetheless.

    This is my story as it stands.

    I had an event in 2012 that lead to a short hospitalization. No one was sure what it was initially, but I did end up with a neurologist from that incident (note: I don't think I need to give specific details of what happened, it would just bog down my already over-wordiness). It took a bit, but he gave a diagnosis and started a treatment. Over the next two years, I saw him every six months. Sometimes I was doing well, other times I was not, and adjustments were made to treatments and tests were done. The diagnosis changed/was added to at various points.

    We're military, so in 2014 we moved and I went to a new neurologist. There is only one in my area. I wasn't doing well at the time, and I was skeptical of having only one doctor option, but he and I worked well together. I told him, as I always have - this is my diagnosis from my last doctor. This is how I feel. I am not in any way attached to the diagnosis he gave. I don't believe it or disbelieve it. I just want to feel better and I don't care what I have is called or if it's called anything. I'd prefer to treat whatever it is instead of just treating symptoms, but whatever it takes to make me feel better is fine by me.

    He was skeptical of my diagnosis from the previous neurologist, and did his own tests. He did end up feeling that diagnosis was confirmed, and we have worked with various medications to varying levels of success. Sometimes I feel good for a long time - I even got a job out of the home for the first time in years because I just felt so great for such a long stretch, and I really wanted to be out and about and doing stuff. Eventually, I didn't feel great again and I had to leave the job to manage a balanced life. Whatever. I miss it, but it is what it is.

    This is my issue: we have continually treated one condition that my neuro believes I have, due to his testing, which he repeats regularly. However, new symptoms have cropped up over time and he seems to ignore them. They don't fit with my diagnosis, but don't negate it, either. Are they part of a whole package of a different diagnosis, or are they a totally separate additional diagnosis? I don't know, I'm not a doctor. I don't really care, either - like I said, I just want to feel good and I don't care how that happens. (Nothing deadly is of concern)

    So how does this fit in with MS? If I listed out all the symptoms, it would be obvious, I guess. Yes, my collection of symptoms matches well with POSSIBLE MS. However, they match with all kinds of other things, too. You know how it is. There's no point in listing out what's going on, because all you could say is, "Sure, could be. Could just as easily not be." I try to limit my internet research so as not play home doctor, but I know that much.

    Like I said above, we're military and we're moving again. I'll need to find a new neurologist, and this time I'm determined to be more of an advocate for myself. I could use some advice on what to look for in a neuro, or how to even go about researching a good neuro. I have all my medical records ready, but I'd also like to know what kind of personal documentation I should take - I have some rough timelines going years back when I didn't think anything big was going on, and some more detailed information over the last year, but would like to know what I should bring with me to an initial appointment, and any tips on making sure everything that's going on is considered, not just the big one or two symptoms.

    The cycle of feeling great and happy and healthy followed by a horrible "relapse" or what have you has brought on intense anxiety. The kind where you know what's causing it and that it's not real, but it still feels so awful anyway. I know that the unreasonable, irrational anxiety is what has brought me here now. For some reason, while I have always been open to whatever doctors tell me, I have absolutely decided that MS is a diagnosis I do not want. For a dumb reason - my mom's dad had MS, and the idea of having to tell her I have it too is terrifying me beyond reason. I KNOW that is irrational - it's not more likely than anything else that I have it or don't. This is absolutely a product of anxiety (which I did see someone for, don't worry). This whole post is a product of anxiety. None of this has any basis in rational thought (the diagnosis is possible, that's not irrational - my attaching onto THIS PARTICULAR DIAGNOSIS as terrifying is the irrational thing, if that makes sense).

    So finally, I get to my questions: I had an MRI of my brain during the initial incident in 2012. It was clear. I've also had 7 lumbar punctures. The fluid was only tested once, in 2014. It was also clear. When I find and meet a new neuro, hearing my symptoms alone, I understand he might want to repeat those tests. However, are clear tests from that many years ago enough to say, "MS is almost definitely not it?" I know you can't tell me that medically. I guess I'm just asking for personal experience, which I promise I will not use to diagnose myself, but more to self-talk myself into calmness while I go through the whole new doctor routine again. Can I point to those tests and say, "listen, I know what these symptoms sound like, but these tests said it's not, so let's look at something else?"

    I know I might not be making much sense, and I know I'm talking myself in a circle here. I know I'm asking you to say, "it's not likely you have MS" when there's no way you can actually say that. But I also know you're people who have dealt with chronic illness for a long time, as I have, so you're probably familiar with the loops and leaps your brain takes when you feel bad and just can't seem to feel better. I realize offering me reassurance means nothing and you could end up wrong, but I'd appreciate it nonetheless. On top of that, any helpful tips and directions to point me for choosing and meeting with a new neuro with the intent of just FEELING GOOD AGAIN would be helpful.

    Thank you, and I'm sorry for the length and rambling craziness. It's just been a long time since I've felt healthy and I want to get there again.

    #2
    Hi and welcome to the boards. Yes, you are rambling but we have all been there ! I am not going to tell you things that are like magic potions . I suggest that whatever doctor you, find primary care or neurologist, make sure that they do a CBC and include your vitamin D level. From my experience, my doctors were giving my vitamin D levels very little attention! Then, when I got serious about the levels, I got the levels above 40 and I started to feel much better ! Good luck

    Comment


      #3
      Hi koerlily

      Not to worry, your post makes sense, very easy to understand what you're saying. I understand anxiety as well - not fun!

      If I read it right, two neuros have confirmed a diagnosis for you, and both have ruled out MS. But you are having more symptoms that you feel could perhaps qualify as Possible MS.

      Originally posted by koerliliy View Post
      So finally, I get to my questions: I had an MRI of my brain during the initial incident in 2012. It was clear. I've also had 7 lumbar punctures. The fluid was only tested once, in 2014. It was also clear. When I find and meet a new neuro, hearing my symptoms alone, I understand he might want to repeat those tests. However, are clear tests from that many years ago enough to say, "MS is almost definitely not it?"
      I know that MRI's can change over time. I would think LP results could too (from negative to positive) but not really sure.

      Originally posted by koerliliy View Post
      For some reason, while I have always been open to whatever doctors tell me, I have absolutely decided that MS is a diagnosis I do not want. For a dumb reason - my mom's dad had MS, and the idea of having to tell her I have it too is terrifying me beyond reason. I KNOW that is irrational - it's not more likely than anything else that I have it or don't.
      I don't think it is so irrational to be afraid of an MS diagnosis, especially being concerned about your Mom's reaction due to her father having had MS.

      Originally posted by koerliliy View Post
      I'll need to find a new neurologist, and this time I'm determined to be more of an advocate for myself. I could use some advice on what to look for in a neuro, or how to even go about researching a good neuro.
      If you were dx probable or possible MS, I would think an MS specialist would be a wise choice. Even though you weren't, The National MS Society can help with finding a good neuro in your area:

      http://www.nationalmssociety.org/Tre...-Care-Provider

      Originally posted by koerliliy View Post
      I have all my medical records ready, but I'd also like to know what kind of personal documentation I should take - I have some rough timelines going years back when I didn't think anything big was going on, and some more detailed information over the last year, but would like to know what I should bring with me to an initial appointment, and any tips on making sure everything that's going on is considered, not just the big one or two symptoms.
      I took two pages of documentation of my symptoms, when they initially started (they went back a year), how they affected me, etc. My neuro actually said he appreciated it, and that it helped!

      Wishing you the best as you go through this. Feel free to vent all you want.

      Take good care of yourself.
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Thank you both for the responses and being so tolerant of my circling around. I'm just having a moment. I'm sure I'll have my head on straight again soon.

        KoKo - you said MRIs can change over time. I've only had one, in 2012. It was taken when I was hospitalized, though, right when I was experiencing major symptoms. So I've been telling myself that if there was something wrong in my brain, it definitely would have shown then. Is that idea correct? Could something that was not there then show now? My second neuro did not do an MRI (okay, he asked me to get one with and without contrast twice and I didn't because I've been trying to blow this off for years). My repeated spinal taps have been for checking on/managing spinal pressure, not diagnostic on the fluid, though my second neuro did have it tested once, 3 years ago. It was clear, so I took that as definitive proof of no worries there.

        I know I'm asking things I could probably research myself, but I'm also aware anxiety is messing with me, so I don't want to accidentally stumble across a list of obscure symptoms and be like, omg, my toe did a thing one time I'm definitely dying!

        Basically I guess I am just working around my anxiety in this time between moves and new doctors. I've made a list of things that COULD be wrong, and MS is at the top as the "worst." So I've convinced myself that if I can rule out MS, then I have nothing so major to be worried about! I want to be able to tell myself that a clear brain MRI in 2012 and clear spinal fluid in 2014 are enough to check that off my list and move on. Realistically, I will not be able to present a new doctor with my list of issues without him wanting to do an MRI. There's just no way. Even looking at my own records with a clear head, I know MS can't be ruled out. Again, I don't think it's any more likely than anything else, but there's just no way a new competent doctor won't check. I want to tell myself in advance, "fine, let him check, I already know it won't show anything." Even I know I'm asking the impossible. Ugh. Thanks so much for being understanding of someone flapping around uselessly.

        Oh, I did look into one thing from this post, breaking my "no medical googling" rules a bit. I haven't had blood work ordered in years (frankly kind of irresponsible on my doctor's AND my part, since medications I currently take should be monitored in that way), and both a B12 deficiency and Vitamin D deficiency seem possible! That's, you know, not great, but encouraging and sound simple to fix! That would be living the dream for me right now, haha. "Oh it's a vitamin deficiency, here's how we fix that, now you're better!" That would be so super.

        Comment


          #5
          Originally posted by koerliliy View Post
          KoKo - you said MRIs can change over time. I've only had one, in 2012. It was taken when I was hospitalized, though, right when I was experiencing major symptoms. So I've been telling myself that if there was something wrong in my brain, it definitely would have shown then. Is that idea correct? Could something that was not there then show now? My second neuro did not do an MRI (okay, he asked me to get one with and without contrast twice and I didn't because I've been trying to blow this off for years).
          I would think that if you were having the MRI performed during a relapse, the active inflammation would have shown up on the MRI. But yes, generally speaking, MRI scans can show changes over time. New lesions may appear, some may change in appearance, and some even disappear.


          Originally posted by koerliliy View Post
          Oh, I did look into one thing from this post, breaking my "no medical googling" rules a bit. I haven't had blood work ordered in years (frankly kind of irresponsible on my doctor's AND my part, since medications I currently take should be monitored in that way), and both a B12 deficiency and Vitamin D deficiency seem possible! That's, you know, not great, but encouraging and sound simple to fix! That would be living the dream for me right now, haha. "Oh it's a vitamin deficiency, here's how we fix that, now you're better!" That would be so super.
          Yes that would be so super!

          Our member Jerry is great at reminding us of our need for appropriate Vitamin D levels. When I got my levels up, I felt a lot better (not a cure though).

          Take Care
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Hi again,
            I'm a real nag, when it comes to doctor/ patient stuff ! I think, sometimes, doctors forget that our symptoms cause us such anxiety that talking to the doctor in the exam room is a tough task for us, patients.
            Isn't it coincidental that the 2 responders that are responding, koko and me, are both diagnosed with PPMS?
            Back to your situation, I am not a doctor but I think that you need a complete neurologic exam with MRI's of C-spine and head and other places, all spine related. Your doctor should determine if you should have them with and w/o contrast, gadolinum. Which is a photo reactive chemical to help the MRI show your 'active' lesions. I've seen the 2 top MS neurologists in Philadelphia, real world class guys, and they never suggested an LP. They said, with the MRI, there isn't a need to do it! Don't forget the McDonald(sp?)criteria. Good luck

            Comment


              #7
              Sorry to have so many questions!

              I'm putting together a kind of timeline of health over the last five years, to carry with my medical records to a new doctor next month. I've got two issues I'd like advice on.

              1. As I said in my original post, I do have a (non-MS) diagnosis which is being treated. My concern overall is that my health has not improved/continues to get worse in ways that seem separate from that diagnosis, and my neuro kind of blows those things off. Whatever, it's fine, I'm moving anyway. But when I write it all down... it all seems kind of whiny? Like tiny little problems that are no big deal. Looking at it objectively, I mean, it just seems like a collection of lame complaints. Taken all together, most of them are not debilitating or life-ruining on their own, but add up to the general feeling that "something is not right" here with my body. But when I look at it, I feel like someone would be like, 'oh is this woman just going to whine about every little thing and be a nightmare patient?' Like, example, I have a problem with my eye. It's only occasionally painful, but other times, it's just a weird thing that I might blow off if other weird things weren't happening. So my question is, is it best to include every little thing that is going on, or just focus on the major, painful/difficult to cope with things?

              2. In preparing this list, I looked back at my old records and mentioned in surprise to my husband, "Hey it says here I had a problem with my leg in 2012. That's weird, I don't even remember that." My memory is... not hanging in there well with me lately, but that's a whole other thing. We both found it interesting, though, because I'm having a problem with my leg now and thought it was a totally new random thing. Apparently not. He also reminded me, though, "remember a couple of years ago when you had that thing with your leg and you couldn't even walk?" Ooops, I'd forgotten that, too. I said yeah, but that was just random freak sciatica, I think. I'd never had it before and haven't since. I didn't even tell my neuro, I just saw my GP, who gave me muscle relaxers that I didn't really take (I don't care much for medications in general), which didn't help, and it eventually went away and didn't come back. What about stuff like that, one off things that previously I've never connected to any kind of big picture?

              I have a weird anxiety about being seen as a whiner or as drug seeking (despite the fact that the only time I've ever accepted a narcotic Rx was after my c-section) and feel stressed about finding the balance between "please take me seriously and help me get to the bottom of this, here is my evidence" and "omg please stop whining everyone feels bad/weird sometimes." When you meet with a new doctor, do you get down into the tiniest details, or do you just try to hit your major symptoms and leave it at that?

              Also, Jerry - I'd really be happy to not do an LP, but as long as my current diagnosis stands (don't see why it wouldn't, but all doctors are different), I probably haven't seen the back of them. Hopefully a new doctor won't be as LP happy as my current one, though! Maybe that is criteria I will use for finding a new one: "And just how often do you think you'd feel the need to stick a needle in my spine just to CHECK?" Haha.

              Comment


                #8
                Originally posted by koerliliy View Post
                So my question is, is it best to include every little thing that is going on, or just focus on the major, painful/difficult to cope with things?
                The things I documented pretty much happened on a "sometimes" basis.

                For instance, I remember these examples: (keep in mind I was dx'd progressive, so may not be helpful in your case)

                Sometimes I have frequency, urgency of my bladder. Sometimes, after my shower, I am very weak until I cool down. Sometimes I have difficulty lifting my right leg into my car. Sometimes I have difficulty putting coins in the vending machine, and putting my pierced earrings in. After walking awhile, sometimes my gait is off, and I limp/drag my leg. Sometimes I have the sensations of cold water on my leg. Sometimes my right arm gets very weak and tired at work. Sometimes I have pain in my eye. Sometimes I have slight vertigo when moving about. And so on.

                Originally posted by koerliliy View Post
                What about stuff like that, one off things that previously I've never connected to any kind of big picture?
                Originally posted by koerliliy View Post
                When you meet with a new doctor, do you get down into the tiniest details, or do you just try to hit your major symptoms and leave it at that?
                I would document most symptoms that can't really be explained away. For instance, a one time eye pain could be eye strain, sinus, etc. However, when it happened, did you get the feeling that this is something very odd, different, or just not right?

                Try to be thorough and let the doctor decide what is important. My neuro appreciated that I took the time to write everything down ahead of the appointment. It helped him get a bigger picture.

                I think as you're writing stuff down, you'll get the feel of what seemed odd and just not right. When in doubt, include it.

                Hope this helps.

                Take Care
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Hello Koko,
                  I just wanted to say thank your for your last post on what type of symptoms to include. My doctor wants a detailed list of symptoms from the time my migraines got more severe a few years ago. I have also had some anxiety about what to include because I was worried about what she'd think. Reading that you also have experienced a water running down a limb sensation makes me feel less weird. OP, it really is nerve-wracking to tell a close friend, let alone a doctor, that you feel an odd sensation. My DH believes me, but he still gives me an odd look when I start poking the side of my face that occasionally goes numb.
                  I am crossing my fingers for clear MRIs for both of us!

                  Comment


                    #10
                    Originally posted by greyhound5 View Post
                    I have also had some anxiety about what to include because I was worried about what she'd think. Reading that you also have experienced a water running down a limb sensation makes me feel less weird.
                    greyhound5

                    Cold water running down my leg, burning sensation on the thigh, and nightcrawlers (worms) crawling under the skin on my foot! (and all on the same leg)

                    Talk about weird!

                    Take Care
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      Hello!

                      I know I'm bumping up an old post, but I wanted to come back with an update because I know that for me, at least, when I find a thread through a google search, I always appreciate a conclusion.

                      So I moved, and I finally got a doctor. She was great, she listened to everything I said without questioning or trying to tell me the things doctors sometimes like to say (ex: "Well, if you're so tired that you need naps, you should know that sleeping TOO much makes you MORE tired so that's probably what it is.")

                      She wasn't comfortable tossing out my standing diagnosis and to be honest, there's no reason why she should. It's been proven. She also is prescribing a new medication to try for my debilitating daily headaches, but not until after an EKG.

                      What I appreciated was that she really took the time to listen to a laundry list of symptoms my old doctor seemed to blow off. After years of feeling really terrible, anxiety kicked up, and once my old doctor picked up on my anxiety, he stopped listening. Everything that was happening was written up to anxiety, and I started to feel like maybe I really was crazy. You know how it goes.

                      Anyway, this doctor has ordered new MRIs (I go on Monday), an EKG (so I can start the new medication), a trip to an ophthalmologist (just something I have to do a lot for other reasons). The best part, though, was the new blood work. She ordered a TON. And the results, which I could view online, kept coming in BANG ON normal, like in the dead center of the normal range - CBC, metabolic panel, etc - or totally negative - Lyme, Lupus, etc. UNTIL!

                      Who was it that guessed it?

                      B12!

                      It's pernicious anemia. After I got the results, my mother offhandedly told me, "Oh, my dad [who had MS] had to get weekly B12 shots for that." Haaa a little late to let me know, mom, but appreciated.

                      I still have to do the MRIs - both to check for MS lesions and because the B12 deficiency can cause very similar damage, as I'm sure most of you are well familiar with.

                      I'm aggravated - I've not been feeling right for a very long time, and it's so frustrating to hear "oh, vitamin deficiency!" after SIX YEARS. It sounds so simple (and at first I was super jazzed because I figured, oh, I'll take a pill and be right as rain!) and like a doctor should have picked up on it a long time ago, but obviously as I've learned more about it, I see that it can be tricky. I'm still bummed about lost time, though. I've also been told that while I likely won't get any worse with treatment, there's no guarantee that existing damage isn't permanent. But no point in dwelling on that, since only time will tell! Onward to treatment!

                      Obviously I'm still waiting for final confirmation that I don't have MS, but a B12 deficiency can mimic MS quite handily, so I'm not sweating it anymore.

                      For anyone who stumbles on this old thread for any reason - take the advice given here! Get your B12 looked at ASAP!

                      Again, thank you all so much.

                      Comment


                        #12
                        Hi koerlily

                        Thank you for sharing your update!

                        Sounds like you have a very competent, thorough, and understanding doctor.

                        I'm surprised, though, that the previous doctor hadn't checked your B12 early on, as B12 deficiency is known to be a possible cause of neurological symptoms, and the blood test for deficiency is pretty much standard.

                        In any case, hopefully after further testing, you find out that you don't have MS.

                        Good luck!

                        Take Care
                        PPMS for 26 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment

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