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    I'm really frustrated

    Background: I've been in limbo since April. I have a lot of MS-ish symptoms, but none of them are bad by themselves (the L'hermitte's is strong, but doesn't hurt). Put together, though, and I just have this feeling (a very strong feeling) that I'm just not right. When I try to explain this to the doctors, I feel like I must sound like a raving hypochondriac. But my neuro thinks I'm probable MS, but she dismisses the parasthesia in my feet as caused by my diabetes. I'm not so sure. Maybe it's both.

    My eyesight suddenly changed two years ago. I noticed everything was blurry, and got new glasses. After a couple weeks, my eyesight got blurry again. I put my old glasses and I could see perfectly! Now it's happening again, but neither pair works well. I see the TV from across the room perfectly if I look through the bottom of my bifocals!

    OK, so cut to today. I was at work when suddenly I got this indescribable "mushy" feeling in my head. Like it was stuffed with cotton. There was also a ringing in my ears. I got up, and felt off-balance. I walked down the hall, and it wasn't terrible, but I wasn't walking in a straight line. I felt awful, so I went home. Also, my feet were burning, I had weird buzzing sensations, and my fingers were twitching. I told my wife, who has been supportive until recently, and she looked skeptical and said it sounds like I'm just being hypersensitive because I'm worried about MS. In other words, it's all in my head. Sigh. So now I have nobody to talk to. I can't stand the humiliation of talking to someone who thinks I'm making it up or is clearly humoring me.

    Wow. In the time it took me to write this, my vision is back to where it was this morning. Aaaagh! I want to scream! Does any of this sound familiar to anybody??

    Sorry for the long post.
    Dx'd on 10-17-11
    Avonex since 10/28/11 - Tysabri since 1-26-12 - 18 doses, then Betaseron since 9/4/13
    Don’t be ashamed to need help. Like a soldier storming a wall, you have a mission to accomplish. And if you’ve been wounded and you need a comrade to pull you up? So what? – Marcus Aurelius, Meditations Book 7

    #2
    Originally posted by chucklebug View Post
    My eyesight suddenly changed two years ago. I noticed everything was blurry, and got new glasses. After a couple weeks, my eyesight got blurry again. I put my old glasses and I could see perfectly! Now it's happening again, but neither pair works well. I see the TV from across the room perfectly if I look through the bottom of my bifocals!

    Wow. In the time it took me to write this, my vision is back to where it was this morning. Aaaagh! I want to scream! Does any of this sound familiar to anybody??
    Yes, very familiar. MS does NOT change refractive error. If you can see clearly through any pair of glasses or any part of any pair of glasses, the problem isn't neurological -- it's refractive.

    Fluctuations in blood sugar are notorious for causing changes in refractive error and changes in vision. And vision can change two or three times a day. Your changeable vision is a clue that your blood sugar may not be as stable as you think it is. Even if you think your glucose levels are stable, your fluctuating vision is telling you otherwise.

    What you're describing has nothing whatsoever to do with MS (even though many people who do have MS insist that everything they notice about their vision is caused by MS). Your changeable vision is an indication that you should be checking your blood sugar more frequently throughout the day and also inform the doctor who's treating your diabetes.

    The problem with vision changing with fluctuations in blood sugar (which causes your vision to change with different pairs of glasses) is SO common that your eye doctor (optometrist or ophthalmologist) should know exactly what you're talking about.

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      #3
      Apparently, I wasn't clear. I was in a bad state, so that's not surprising. I have been diabetic for 13 years. I am well aware that diabetes causes blurry vision. I also know that my blood glucose levels have been trending downward, perhaps at least in part due to having lost about 85 lbs in the past two years. In all those years, I have NEVER experienced vision changes on the scale of a couple of hours. It had always happened gradually, over a couple of days. The reason I got a little freaked is because I was already very tired, and had experienced all that other stuff, like the balance issues, I had just been shut down by the one person I could discuss this with, and then fluctuating vision (which included double vision for a short time, but I decided it was my glasses) - well, it was alarming.

      What I was wondering was whether anyone else had experienced any or all of these things at some point. Instead, the only reply was about the one symptom, and it was rather patronizing, actually. The reply was largely based on false premises (that I don't check my blood glucose, that I attributed the vision changes to MS when I don't even know for sure I HAVE MS, that I don't know the connection between diabetes and vision), and just plain snippy.

      I was hoping someone else might have had similar experiences because I was feeling very alone and frustrated. Instead, all I got was a scolding and now I just feel worse. I guess I AM alone.
      Dx'd on 10-17-11
      Avonex since 10/28/11 - Tysabri since 1-26-12 - 18 doses, then Betaseron since 9/4/13
      Don’t be ashamed to need help. Like a soldier storming a wall, you have a mission to accomplish. And if you’ve been wounded and you need a comrade to pull you up? So what? – Marcus Aurelius, Meditations Book 7

      Comment


        #4
        Well, chuckle, the only thing I can tell you about is MY experience with optic neuritis. What happened to me doesn't sound like your experience at all because my vision slowly, but consistently, took a powder (optic neuritis doesn't vacillate over a couple of hours). I kind of ignored it at first because I was young (22), but it just got worse and worse until I had no choice but to see the doctor.

        Long story short, I had optic neuritis according to the head ophthalmologist at our local hospital in W. Philly. I didn't want to hear it, so I went on my merry way until 14 yrs. later when it came back with a vengeance, along with a large host of other neurological problems. I was diagnosed pretty quickly at that point. .

        You obviously can't be diagnosed over the internet, but I can tell you that chronic conditions do seem to hang together in some people. Do you have type I or type II diabetes? Are you insulin dependent?

        Please keep us posted as to how you're doing, chucklebug, and try to stay calm (I know, easy to say ).
        “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
        Diagnosed 1979

        Comment


          #5
          Hi Chucklebug, I get it. I'm not diagnosed either and have experienced most of what you're describing. The acuity in my eyes changes - both of them at different times. One day the left eye will be blurry for a few hours, then it clears up. Another day the right eye will blur. Sometimes, it's when I get up in the morning. Sometimes, it's before I go to bed at night. Sometimes, they both blur. Sometimes it's all day, or for a couple of days.

          I don't have blood sugar problems, and I don't wear glasses except for reading on occasion. And the neuro-opth wrote a script that I had filled for the reading glasses. After having gotten them, the acuity in my left eye improved to the point the script isn't right anymore. She didn't think that would happen at that point, but it did.

          My spouse was skeptical too, until he saw it, and now is very understanding. People can't understand, and oftentimes don't believe (or want to believe - denial) what they can't see with their own two eyes.
          I do not have MS. I have Whatchamacallit; and all of the symptoms are mirages.

          Comment


            #6
            Thanks. Funny thing is, my eyes weren't the thing that really worried me. It was the other stuff. I guess I didn't explain that very well. What has me more worried is the L'hermitte's and the two small lesions in my brain. I also have balance problems. So the funky eyesight was the straw that broke the camel's back.

            I'm type II diabetic, not insulin-dependent. As I said before, it's going relatively well. My sugars are higher than I want, but improving and my last 3 A1Cs were very good. My plan is to keep losing weight and hope I can reverse the diabetes.
            Dx'd on 10-17-11
            Avonex since 10/28/11 - Tysabri since 1-26-12 - 18 doses, then Betaseron since 9/4/13
            Don’t be ashamed to need help. Like a soldier storming a wall, you have a mission to accomplish. And if you’ve been wounded and you need a comrade to pull you up? So what? – Marcus Aurelius, Meditations Book 7

            Comment


              #7
              Okay. Type II diabetes is not autoimmune as MS is thought to be.

              I don't have other autoimmunes except for a VERY mild case of psoriasis that was diagnosed when I was a little girl. It rarely gives me any problems, but that's okay because the MS has done plenty of damage all by itself, thank you very much. . I was a dancer when I was younger, and I miss that the most. The wheelchair is necessary, so I don't let that bring me down (too much) because none of "my peeps" are put off by it (except my husband because, well, I'm not the hot chick anymore....).

              I hope you get some answers soon, cbug! I see so many people on here waiting for answers. It's got to be maddening!
              “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
              Diagnosed 1979

              Comment


                #8
                Hi chucklebug:
                I understand that you're frustrated, but it's the height of ingratitude to ask for a reply and then criticize the very reply you asked for. I invite you to read my post again. There's nothing scolding about it. Pointing out that there's something you're overlooking isn't scolding. Since you mentioned it, I'll allow that maybe you are being hypersensitive because you're worried about MS.

                Also bear in mind that replies here are read by other people who want to learn things even if the original poster doesn't. What you described is important enough that if I "happy talked" you, you would have missed the point.

                So for anyone else who wants to know:

                In MS and other demyelinating diseases, it isn't uncommon for vision to become blurry and clear within the course of a couple hours. But with demyelinating diseases, the blur is different than what you described. The key to what you described is that your vision cleared up with different glasses or different parts of the lenses. That indicates that the change is refractive.

                The transient blur that comes with a demyelinating disease isn't refractive. Vision is blurry because of faulty signal transmission through the optic nerve(s) or other part of the visual pathway. And the blur doesn't clear up with glasses of any prescription. That's an important point for folks who have blur due to demyelination. (It isn't uncommon for people to remark that their vision doesn't clear up even though they keep cleaning their glasses.) Also, the vision isn't just blurry. It's usually also degraded to some degree.

                To allow you to read replies by posters who have demyelinating blur without pointing out that what you described is different would be to allow you to think that your blur is the same and thus allow you to be misled into thinking that, since people with MS have transient blur, that you may have MS too based only on that. That would be a disservice to you. The desire to find someone to relate to is also what can lead you off track.

                You asked if your blur sounds familiar and I told you why it does and why it's important. It's an indication that you should bring up the blur that clears with a change of glasses with your doctors. When I said that your eye doctor will know exactly what you're talking about, it also means that you'll be talking to someone -- besides me -- who knows that you're not making it up.

                It's frustrating to not have a diagnosis, but I image it's even more frustrating after turning aside pertinent information just because you don't like the sound of it. Differentiating what part of your blur is due to possible MS and what part of it isn't can be helpful in determining what's causing your symptoms and getting you past the frustration.

                Comment


                  #9
                  Redwings:

                  First, I have to confess a couple of things: I was not in a completely rational state when I started the thread (I'm doing better now), and I made the mistake of taking what you wrote as a personal attack. For that, I was wrong and I sincerely apologize. Also, and I thought of this shortly after my reply, you are correct in pointing out that this is a public forum, and others might have benefited from what you wrote. Mea culpa.

                  However, I accepted your invitation to read what you posted and I offer you the same. While it may not have been your intention, with all due respect I feel I have to point out that I wrote about multiple symptoms like L'Hermitte's, balance troubles, burning feet, weird sensations, and my eyesight. You ignored those and wrote that what I described has nothing at all to do with MS. If the other symptoms couldn't have anything to do with MS, it's news to me.

                  Second, when you tell me I need to check my blood pressure more often, I still say that was presumptuous and scolding. I don't see how not to feel scolded. I can practically see you wagging a finger at me. I ask you to put yourself in my shoes and see how it sounds. However, I should have just let it pass.

                  Finally, you might consider that I was clearly upset, and hoping for some empathy and reassurance. That's probably not the best time for a lesson in medicine. I'm not asking people to "talk nice," just some awareness of what's right for the situation. You accused me of ingratitude, and maybe you're right. But if I slip and fall in the mud, I would be most grateful to someone who helped me get up before explaining that I need to walk more carefully and buy better shoes.

                  I AM afraid I might have MS. I'm sure I'm more fragile than normal (btw, last night's upset state is very out of character for me). But in the end it's my fault. I need to remember that a lack of tact doesn't imply a lack of genuinely helpful intent. I will try to be more temperate in the future.
                  Dx'd on 10-17-11
                  Avonex since 10/28/11 - Tysabri since 1-26-12 - 18 doses, then Betaseron since 9/4/13
                  Don’t be ashamed to need help. Like a soldier storming a wall, you have a mission to accomplish. And if you’ve been wounded and you need a comrade to pull you up? So what? – Marcus Aurelius, Meditations Book 7

                  Comment


                    #10
                    Hi Chucklebug -

                    I have a suggestion, ask the doc for a lumbar puncture. That will help with an MS diagnosis. It's scary, I'm not sure if you have had one, but it's not as bad as it is made out to be. I know you have had the MRI because you know about the lesions.

                    I don't take your symptoms lightly, and MS is unpredictable and not the same for everyone, as you are probably aware. Combined with your other health issues, anything could be possible. And a lot of people post when they are not feeling well, scared and confused, don't apolgize for your frame of mind.

                    Yes, this is a public forum but people need to make sure they are sensitive and/or preface that they don't mean to be rude or insensitive, just concerned. Most are concerned and want to get their point across quickly so you get it and can act on it so they may "sound" abrupt - I'm sure I have at times. A lot of Redwings posts are extremely straight forward and matter of fact. I wouldn't take them personally if they come across as scolding. Redwing provides some accurate information, and I'm not discounting or putting down Redwing at all - I've gotten some great info myself. Email, texting, posting is a hard medium to ascertain the tone of someone's "voice."

                    A lot of people provide specific information based on what you present in your post, but as with any public forum, not all information is exactly what is going on with you. It's good to check the info and take out of it what you think is best and works for you and then check it with the doc. It's a good place to vent and think "out loud" - you do get so much information and support, it helps you when you talk to the doctor or do some research of your own. And the 'back and forth' posts are great.

                    best of luck, and keep reading and posting here, it's a good place and the people do want to help. I hope you find some answers.
                    This music is the glue of the world Mark. It's what holds it all together. Without this, life would be meaningless

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