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    New and Concerned

    Good Evening Everyone,

    My name is Jason and I am a band director at a large high school in Florida. I am 32 years old. I have had some very strange symptoms for about a year. However, looking back at least four years, MS can explain a lot of things that have happened in my life. I am not sure what I should do. I am looking for guidance on what to do. Who should I see, would they even take me seriously?

    I have the following symptoms:

    1. Random patches of numbness that come and go. The most likely places are on my hands and feet (Peripheral Neuropathy) This is always like a half numbness. It is very annoying. It has gotten to the point where my hands and feet are almost always half numb. It seems when I touch things or hold things whatever is being touched turns numb as well. I have had these random patches of numbness just about everywhere on my body at some point. I also have an altered state of touch. Very strange sensations.

    2. I have always been highly intelligent. However, I have noticed in the last year that I often have brain fog. My recall of information has become poor. Especially words. I know exactly what I want to say, I can see it in my mind but it never comes out. Oddly enough it comes out as something completely different. For example, last night I went to a restaurant and I asked my fiance where she found the forks. What came out was "Where did you find the straws?" I say it with such conviction because I am so sure of what I wanted to say but it is wrong. This sort of thing has been happening with increased frequency and it appears to be getting worse as time goes on. Furthermore, I will be in class teaching and writing on the whiteboard simultaneously but what I am saying and what I am writing are two completely different things.

    3. Vision issues. I had 20/15 vision for most of my life until about five years ago or so I started losing my distance vision. In the last year I feel like my vision has depreciated at an alarming rate. It is no longer just distance vision but all vision. My right eye is especially bad. In the right eye it almost seems as if colors are washed out and greyish. Furthermore, I feel like I have lost some peripheral vision.

    4. Fine motor skills. I feel like I am slowly losing my fine motor skills. Little things like texting on a phone and typing this message seem much more difficult than they used to. I have slowed down significantly and make a plethora of mistakes. Things I have done so much just feel strange.

    5. Movement. I have noticed a significant decrease in my walking speed and my gait seems to have changed. I am well aware of it but it is nothing I am consciously doing. This is not significant but noticeable. I feel much stiffer than I used to.

    6. Involuntary twitching. My newest symptom is involuntary twitching. It started in my right eyelid about three weeks ago and sometimes spreads down my cheeks. This is intermittent and does not happen all the time but definitely a neurological issue.

    7. Dizziness and vertigo. This one comes and goes but sometimes it can be pretty severe. Sometimes it happens while I am driving and I fear for my life. This is one of those symptoms that I had four years ago that could have been my first episode. I had about three months of debilitating dizziness and vertigo. I had to sit down at work while teaching. It was just awful. Doctors could not explain it but they certainly didn't do anything outside of a blood test.

    8. Other cognitive deficiencies. I have noticed it is much more difficult to focus and have developed some ADD tendencies. I used to be able to multitask and get stuff done better than most people I know. It is getting harder. Remembering names is becoming an issue sometimes as well. Names of people I see and communicate with every day like my students.

    9. Pain. I have had numerous injuries in my life that can explain pain but most of them are really old injuries. I have more pain than someone my age should ever have to endure. I do not know if this is related or not.

    10. Bowel problems. I am almost always constipated and I drink a lot of water and eat fairly well.

    I currently have a recurrent cholesteatoma in my left ear that needs to be surgically removed soon but it does not explain any of these symptoms as it is not in brain.

    What do you all think and what should I do from here? Any advice would be really appreciated. I have seen my primary physician and they basically turned me away. Thank you for your time!

    #2
    Hi Jason, Welcome to MSWorld. You have done a good job of enumerating and describing your symptoms. While any of them could be construed as MS related, they could also be caused by many other things. Of course in tandem, they sure sound scary!

    Is there an option for you to see an eye doctor about your vision issue? That sounds like a very concrete change that an eye specialist should be able to discuss with you more and at least document some baseline information about. I do hope you are able to get some answers. I wish you the best in your investigation and hope you'll keep us posted.
    All the best, ~G

    Comment


      #3
      Jason,
      I am sorry that you are having such a difficult time due to medical reasons. Instead of commentary about your symptoms I believe it's more prudent to point you to resources that should assist you on your journey. My heart goes out to you and I hope you will soon find the answer(s) to your questions quickly. Unfortunately, a MS diagnosis is often not quick to come by.

      From the National Multiple Sclerosis Society:
      At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. Several strategies are used to determine if a person meets the long-established criteria for a diagnosis of MS, and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history, a neurologic exam and various tests including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis.

      It's disappointing that your primary care physician blew you off. In the future you might look for someone that's a little more proactive, compassionate and interested. In your situation, I would look for a neurologist that specializes in MS (MS Specialist) in your area to have a consult with. There's a doc finder here: https://www.nationalmssociety.org/Re...tors-Resources

      Part of the diagnostic criteria is to rule out other potential causes of your symptoms. Here's the diagnosing MS page from the National Multiple Sclerosis Society: https://www.nationalmssociety.org/Sy.../Diagnosing-MS

      Again, I am sorry for your troubles and hope you can receive proper medical treatment in short order. I wish you well...

      Comment


        #4
        Hello Jason,

        I'm deeply sorry that you are experiencing the symptoms you have described.

        First, I'm sure you are aware that cholesteatomas can, in rare cases, cause many of the symptoms you listed.

        But to me it seems as though you have yet to really sink your teeth into getting these symptoms explained by physicians.

        If, with proper expertise, cholesteatoma can be ruled out as a cause then I would echo the counsel to find a good neurologist with whom you communicate well and get an MRI. I can't stress enough how important it is to find a perceptive, receptive neurologist; one who will take all the time necessary until the two of you can secure an explanation, a diagnosis.

        MS is often notoriously difficult to diagnose. Don't waste your time and energy being frustrated with the level of care you are currently receiving. Find better doctors and persist. Explain your symptoms more seriously, be convincing. Focus on getting a diagnosis. Sink your teeth into it. The bottom line is that this is your life and health; no one will ever be as serious about it as you are.

        There is nothing incompatible with being doggedly determined while maintaining an attitude of inner peace and stability.

        I wish you the very best. Seek and keep seeking and you will achieve an accurate explanation. Of course, first you must find like-minded doctors willing to persist with you.

        Best to you!

        Comment


          #5
          Originally posted by gargantua View Post
          Hi Jason, Welcome to MSWorld. You have done a good job of enumerating and describing your symptoms. While any of them could be construed as MS related, they could also be caused by many other things. Of course in tandem, they sure sound scary!

          Is there an option for you to see an eye doctor about your vision issue? That sounds like a very concrete change that an eye specialist should be able to discuss with you more and at least document some baseline information about. I do hope you are able to get some answers. I wish you the best in your investigation and hope you'll keep us posted.
          I am actively pursuing an eye appointment. We have been playing phone tag with my crazy work schedule. I totally agree this needs to be addressed and they may have some ideas. Thank you!

          Comment


            #6
            Originally posted by Marco View Post
            Jason,
            I am sorry that you are having such a difficult time due to medical reasons. Instead of commentary about your symptoms I believe it's more prudent to point you to resources that should assist you on your journey. My heart goes out to you and I hope you will soon find the answer(s) to your questions quickly. Unfortunately, a MS diagnosis is often not quick to come by.

            From the National Multiple Sclerosis Society:
            At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. Several strategies are used to determine if a person meets the long-established criteria for a diagnosis of MS, and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history, a neurologic exam and various tests including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis.

            It's disappointing that your primary care physician blew you off. In the future you might look for someone that's a little more proactive, compassionate and interested. In your situation, I would look for a neurologist that specializes in MS (MS Specialist) in your area to have a consult with. There's a doc finder here: https://www.nationalmssociety.org/Re...tors-Resources

            Part of the diagnostic criteria is to rule out other potential causes of your symptoms. Here's the diagnosing MS page from the National Multiple Sclerosis Society: https://www.nationalmssociety.org/Sy.../Diagnosing-MS

            Again, I am sorry for your troubles and hope you can receive proper medical treatment in short order. I wish you well...
            I am definitely going to look for a neurologist. I wasn't sure if I should try to find a new primary care physician or go straight to a neurologist. I do not need a referral but I also want the neurologist to take me seriously. Thank you so much for the resources, I have been researching so much but this is very helpful. I really appreciate your assistance in my journey.

            Comment


              #7
              Originally posted by Myoak View Post
              Hello Jason,

              I'm deeply sorry that you are experiencing the symptoms you have described.

              First, I'm sure you are aware that cholesteatomas can, in rare cases, cause many of the symptoms you listed.

              But to me it seems as though you have yet to really sink your teeth into getting these symptoms explained by physicians.

              If, with proper expertise, cholesteatoma can be ruled out as a cause then I would echo the counsel to find a good neurologist with whom you communicate well and get an MRI. I can't stress enough how important it is to find a perceptive, receptive neurologist; one who will take all the time necessary until the two of you can secure an explanation, a diagnosis.

              MS is often notoriously difficult to diagnose. Don't waste your time and energy being frustrated with the level of care you are currently receiving. Find better doctors and persist. Explain your symptoms more seriously, be convincing. Focus on getting a diagnosis. Sink your teeth into it. The bottom line is that this is your life and health; no one will ever be as serious about it as you are.

              There is nothing incompatible with being doggedly determined while maintaining an attitude of inner peace and stability.

              I wish you the very best. Seek and keep seeking and you will achieve an accurate explanation. Of course, first you must find like-minded doctors willing to persist with you.

              Best to you!
              Thank you so much for your response. I hope that the Cholesteatoma is not causing these symptoms but I guess it could be a good thing. They could all be eradicated after surgery. I have looked at every slice on every angle of the CT Scan and I am not a professional but it doesn't appear to have eroded into my brain. Another poster sent me a link that allows me to search for a neurologist in my area. I am checking this now. Is it normal for neurologists to have a low rating? All of the ones in my area are rated poorly. Thank you so much for all of your insights and support!

              Comment


                #8
                Definitely go to an ophthalmologist. My eye dr was the first to identify that something was wrong which set me down the path of my MS diagnosis.

                While you are waiting for the eye dr appointment, I would at least try to see if there are any neurologists that they recommend.

                I've met a number of neurologists and I would say that finding one with a really good bedside manner is difficult. But with some of my drs, I'll take their expertise and level of tenacity to find out what's wrong over a cheerful demeanor. This is probably why ratings are low--that and the fact that sometimes neuros don't tell us what we want to hear or vice versa, so they'll get lower ratings for that. I would take the ratings with a grain of salt unless there are a number of people complaining about the same thing--and depends on what that thing is too.

                As for the PCP--if you are happy with their care otherwise, I'd say keep them, but if you feel like you are consistently being ignored or brushed off in all areas of your care--I would start looking for a new one.

                Good luck!

                Comment


                  #9
                  If you get the eye appt. you may want to ask for an OCT- it looks at the optic nerve and can detect thinning myelin- but- make sure your insurance covers it as it´s expensive.

                  There is a vision/color test called the Ishihara test that you can find online- numbers are hidden in different colored pages of small dots.

                  Comment


                    #10
                    I'm late to the party and I don't have much to add, but welcome!
                    ~ Faith
                    MSWorld Volunteer -- Moderator since JUN2012
                    (now a Mimibug)

                    Symptoms began in JAN02
                    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                    .

                    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                    Comment


                      #11
                      Jason, I am sorry to hear that you have found yourself here. MS is difficult to diagnosis and usually determined by elimination. You have gotten great ideas. What was helpful for me was a concise, printed out, bullet point list of symptoms, like you posted here. Some people process better if it is written out and it would be a good tool for a meeting with a neurologist and/or opthomologist.

                      Good luck and hang in there....living with so many crazy symptoms can seem to make you feel crazy too. We all understand!! Please do keep us posted.

                      Comment

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