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    Recently began process to be evaluated for MS Diagnosis

    Hello, I am new here and thought I would post my story and hopefully get insight from others who have gone though this. I am a 34 year old otherwise healthy male, These past 5 months or so have been very stressful and I am trying to get to the bottom of the neurological symptoms I am experiencing. This is going to be a bit long-winded, and probably more information than I need to include but I felt was important to get all the details.


    This all seemed to start for me back in the middle of December, 2018. While working on cutting up raw meat (venison) I accidently cut my left middle finger. I cleaned up the cut, applied isoprophyl alcohol and neosporin and wrapped a bandaid around it and didnt think too much more of it.


    Within 3-4 days of this I started experiencing numbness in my left Pinky and Ring fingers (which is part of the Ulnar nerve, not the Median nerve that is in the middle finger). I was worried somehow my cut affected the nerves, even though the finger I cut and where I was experiencing the numbness were part of different nerves. Shortly after, I visited my PCP and he prescribed an 10 day antibiotic. I took the entire course of the antibiotic but still had some numbness occuring.


    After having the numbness for probably 2-3 weeks, I noticed that the numbess started going away, however I had what felt like a pinched/compressed nerve at my funny bone. This lasted for probably 1-2 weeks.


    Then the compression I felt in the funny bone seemed to move up into my Left shoulder/upper arm area. It was a dull/achy type pain and this ended up occuring for almost 4 months.


    Over the course of the 4 months I was having the dull/achy shoulder pain I visited my PCP on a few occasions, in which several blood tests were ordered, an X-Ray of me left shoulder was performed, and an EMG/Nerve Conduction Study was performed. The X-Ray and Nerve conduction study came bakc completely normal. The Blood tests included, CBC, Double stranded DNA, ANA, Lyme, BARTONELLA PCR, C-REACTIVE PROTEIN, SJOGRENS AB, and some additional Antibody tests. The only test that showed slightly abnormal was the ANA (Antinuclear Antibody) which resulted in 1:160 titer. The ANA test was repeated a 2nd time and that test indicated a normal ANA titer.


    The Lyme testing (ELISA test) was conducted twice. Since the ELISA test is only about 50% accurate, the same test was repeated a 2nd time. Each time it came back negative for Lyme disease. For further peace of mind, after going through some hurdles, I was able to get my PCP to agree to ordering the Western Blot version of the Lyme testing, which is more specific and about 80% accurate. I am currently waiting on the results of this. I suspect this too will be negative, but wanted to feel (more) confident about ruling Lyme disease out as a possibility.


    Within the past 2-3 weeks the dull achy pain I had been experiencing in my left shoulder has stopped for the most part, however I am now experiencing a variety of neurological symptoms, including; muscle spasms in my upper back and legs, tremoring/shaking in my arms, irritation and minor distortion in vision in the outside corner of my right eye, muscle cramping on the inside of my right knee, and general fatigue in my legs. I'll wake up in the morning after getting a full 8-9 hours of sleep and my legs will feel like I've been running vigorously for several hours.


    As the Neurological symptoms we just occuring my PCP referred me to a local Neurologist who I had my first visit with this week. I was not very impressed with his lack of concern and uncaring nature but I explained all of the above history and current symptoms and he basically said he had no idea what could be causing all this. I finally had to mention about what he thought of the possibility of this being MS, and all he would say is that I was showing some signs of it, but didn't offer up any other conditions that might be causing all this. I asked whether it would help rule out or focus more closely on something specifically if we could do an MRI of the brain. He did agree to submitting a request to get authorization from my insurance to do an MRI. He mentioned that some lesions in the brain are normal due to age and minor injuries, but that there is a way to distinguish those from ones caused by MS.


    I am thinking of getting a 2nd opinion from another Neurologist but not sure if I should first wait to see what the MRI results provide, and then decide whether to find another general Neurologist, or one who specializes in MS (depending on MRI results). I'm concerned my symptoms seem to be occuring quickly and that I need to get a diagnosis as quickly as possible. Is it normal to have multiple symptoms occuring this early on?


    I also wanted to ask if I should be asking the doctor to order a specific MRI of the brain (i.e. with/without contrast, etc)? Is there any other conditions that still could be causing this, other than MS? While trying to work through the battery of testing, is there anything I can do myself to keep this from progressing faster? I feel helpless and want to be as proactive as possible.


    I appreciate any feedback and/or experiences others have had.


    Thanks,
    Kevin

    #2
    Welcome Kevin. Sorry you are experiencing unexplainable symptoms.

    The MRI without contrast will show the same lesions. The contrast agent will cause any active lesion to enhance and appear bright on views. The McDonald's criteria is used to diagnose MS once mimics are ruled out. This criteria requires lesions to be disseminated in both location and time. So 2 different locations in the central nervous system, along with evidence occurring at 2 different times.

    Aside from the brain, the cervical spine is the other common place for MS lesion locations.

    If you did have an MRI with contrast, and evidence showed some MS lesions enhanced with contrast and other MS lesions did not, that could be evidence of dissemination in time.

    I would wait to get the MRI results first before seeing another neuro. You could schedule, as it may take time to get in to see one, but make sure you have your MRI results and results of all other tests to date.

    MS doesn't usually jump around to multiple locations, especially early on. So hopefully, not MS. But definitely seek an answer.

    Lots of luck.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Originally posted by pennstater View Post
      Welcome Kevin. Sorry you are experiencing unexplainable symptoms.

      The MRI without contrast will show the same lesions. The contrast agent will cause any active lesion to enhance and appear bright on views. The McDonald's criteria is used to diagnose MS once mimics are ruled out. This criteria requires lesions to be disseminated in both location and time. So 2 different locations in the central nervous system, along with evidence occurring at 2 different times.

      Aside from the brain, the cervical spine is the other common place for MS lesion locations.

      If you did have an MRI with contrast, and evidence showed some MS lesions enhanced with contrast and other MS lesions did not, that could be evidence of dissemination in time.

      I would wait to get the MRI results first before seeing another neuro. You could schedule, as it may take time to get in to see one, but make sure you have your MRI results and results of all other tests to date.

      MS doesn't usually jump around to multiple locations, especially early on. So hopefully, not MS. But definitely seek an answer.

      Lots of luck.
      Thanks so much for the reply Kathy! So it sounds like the brain MRI should be with contrast to get the best chances for MS lesion detection.

      So even with a more progressive form of MS you typically wouldn't see this early onset of all these different symptoms I am experiencing? That is a little encouraging to hear. I just want to get to the bottom of it, but I realize this process could take several months.

      Comment


        #4
        You may want to reconsider using contrast for the MRI. If you can get it done on a Tesla 3 it will pick up more info and with the concerns about contrast they can tweak a non-contrast MRI to show more info- ask the neuro about that. Whatever you do, if you are going to have another MRI down the road, be sure to use the same strength MRI so they can do an apples to apples comparison. My first one was on a 1.5 so that next one on a Tesla 3 though more detailed could not give as much info as if the first had also been done on a Tesla 3.

        Comment


          #5
          Hi Kevin and Welcome!

          Thank you for sharing your experiences with us. Sorry that you've been going through the stress of having various symptoms. Trying to figure out what's going on is definitely anxiety provoking, to say the least.

          I am wondering how your neurological exam went regarding:

          -Cranial nerve function (eye movement, balance, pupils, etc)
          -Coordination and strength
          -Nerve sensation (numbness, position sense, vibration sensitivity, etc)
          -Reflexes
          -Presence of Lhermitte’s sign

          Did you have any neurological deficits that were apparent?

          I flunked my very first exam.

          In any case, if you're interested, here is a brief explanation of a typical neuro exam:
          https://multiplesclerosis.net/diagno...ological-exam/

          Take Care
          PPMS for 24 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Originally posted by KoKo View Post
            Hi Kevin and Welcome!

            Thank you for sharing your experiences with us. Sorry that you've been going through the stress of having various symptoms. Trying to figure out what's going on is definitely anxiety provoking, to say the least.

            I am wondering how your neurological exam went regarding:

            -Cranial nerve function (eye movement, balance, pupils, etc)
            -Coordination and strength
            -Nerve sensation (numbness, position sense, vibration sensitivity, etc)
            -Reflexes
            -Presence of Lhermitte’s sign

            Did you have any neurological deficits that were apparent?

            I flunked my very first exam.

            In any case, if you're interested, here is a brief explanation of a typical neuro exam:
            https://multiplesclerosis.net/diagno...ological-exam/

            Take Care
            Thank you and everyone else who responded. The doctor did some basic reflect / strength testing. He tested reflexes in my knees, which seem to respond to his touches. While sitting, he had me lift my legs up and he tried pushing down on them and was able to. I was able to follow movements with the pen with my eyes and he did not note any issues with that. He did observe my hand tremoring/shaking that is still occuring daily.

            In addition to all the above, I am also having occasional sharp pains down in the urinary tract area. At random times I will get a quick sharp pain. It definitely takes you for a surprise.

            Thank you so much everyone for your feedback. I realize that every MS case seems to be unique in it's development and type of symptoms, however is there any thought as to whether the symptoms I described above can be considered (somewhat) typical of someone who is in the early stage of possible MS? Do patients usually only see 1 symptom at a time, or are multiple symptoms as I described above "normal" to see in the early phase? Does this in any way indicate that I may have more of a progressive form of MS, as opposed to relapsing-recurring type?

            I am trying to get in to see a MS Neurologist, but they seem to book out appointments a couple of months, which is disappointing. For now I will just go with the MRI that the general Neurologist recommends, I just figured it would be worth asking for a specific type if that was the general consensus.

            I have times where I get so mad at myself for having the cut to my finger, as I really believe that was the trigger for all this, but I am trying not to be so hard on myself and just move forward.

            I do take a multi-vitamin every day, but if there are any other supplements or types of food that are recommended, I would love to hear what those are. I really hope research will continue to get patients closer to a cure. Thanks again everyone!

            Comment


              #7
              Originally posted by kdrymer View Post
              I realize that every MS case seems to be unique in it's development and type of symptoms, however is there any thought as to whether the symptoms I described above can be considered (somewhat) typical of someone who is in the early stage of possible MS? Do patients usually only see 1 symptom at a time, or are multiple symptoms as I described above "normal" to see in the early phase? Does this in any way indicate that I may have more of a progressive form of MS, as opposed to relapsing-recurring type?
              Hi Kevin ~

              Early symptom presentation varies, and depends on where the damage/demyelination occurs in the central nervous system.

              Speaking only for myself (PPMS), symptoms came on gradual and worsened under certain conditions - such as from my body becoming too warm, or from prolonged activity.

              After walking for awhile, my leg would tire and cause a limp or drag. Using my arm for awhile would bring on extreme weakness in my arm.

              Bladder urgency, extreme weakness after warm shower, impaired hand/finger dexterity, difficulty lifting leg into the car, foot drop, impaired eye muscle coordination, hyper reflexes - these were some of my early symptoms, which gradually worsened over time.

              Unlike you, I had no pain (and fortunately still have no chronic pain - sometimes occasional muscle pain, which is short lived).

              In any case, the MRI will be important and useful in providing info about your brain and spinal cord. I know it's difficult to have to wait for answers. For the time being, take good care of yourself physically, mentally, and emotionally.

              Take Care
              PPMS for 24 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                Originally posted by KoKo View Post
                Hi Kevin ~

                Early symptom presentation varies, and depends on where the damage/demyelination occurs in the central nervous system.

                Speaking only for myself (PPMS), symptoms came on gradual and worsened under certain conditions - such as from my body becoming too warm, or from prolonged activity.

                After walking for awhile, my leg would tire and cause a limp or drag. Using my arm for awhile would bring on extreme weakness in my arm.

                Bladder urgency, extreme weakness after warm shower, impaired hand/finger dexterity, difficulty lifting leg into the car, foot drop, impaired eye muscle coordination, hyper reflexes - these were some of my early symptoms, which gradually worsened over time.

                Unlike you, I had no pain (and fortunately still have no chronic pain - sometimes occasional muscle pain, which is short lived).

                In any case, the MRI will be important and useful in providing info about your brain and spinal cord. I know it's difficult to have to wait for answers. For the time being, take good care of yourself physically, mentally, and emotionally.

                Take Care
                Just curious how the Neurologist distinguishs the type of MS that a patient has? Is this done solely based on symptoms and when the occur, and/or imaging of the brain? Thanks again.

                Comment


                  #9
                  Originally posted by kdrymer View Post
                  Just curious how the Neurologist distinguishs the type of MS that a patient has? Is this done solely based on symptoms and when the occur, and/or imaging of the brain? Thanks again.
                  Good questions, Kevin.

                  The NMSS describes the MS types better than I can:

                  https://www.nationalmssociety.org/Wh...MS/Types-of-MS

                  In some cases, progressive MS has less inflammatory activity on brain imaging and less visible lesion load. Physical disability doesn't always correlate well with lesion load.

                  Take Care
                  PPMS for 24 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #10
                    Originally posted by KoKo View Post
                    In some cases, progressive MS has less inflammatory activity on brain imaging and less visible lesion load. Physical disability doesn't always correlate well with lesion load.
                    Should have added that spinal cord lesions and spinal cord atrophy is highly correlated with physical disability.

                    Gosh, Kevin - hope I'm not getting down "into the weeds" too much.

                    You haven't even had an MRI yet.

                    Take Care
                    PPMS for 24 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      Right now I'm struggling to get a referral to an MS Center/Specialist, even after seeing the general Neurologist who had no answers. I called the MS Center that is 2 hours away from me and they want me to see one of their general Neurologists first, and don't have appointments until September. They did say if I had an MRI done which indicated some type of lesion activity then they would probably be able to schedule me into the MS center/specialist directly.

                      So I called the local Neurologist's office who said I would have within a week (which is today) about whether my insurance will cover the MRI and was rudely told by the office staff that they still haven't heard back. It almost sounded as if they had forgotten to make the request to insurance.

                      I think I'm going to try contacting my insurance company directly to find out the status of the request.

                      Comment


                        #12
                        Originally posted by kdrymer View Post
                        Right now I'm struggling to get a referral to an MS Center/Specialist, even after seeing the general Neurologist who had no answers. I called the MS Center that is 2 hours away from me and they want me to see one of their general Neurologists first, and don't have appointments until September. They did say if I had an MRI done which indicated some type of lesion activity then they would probably be able to schedule me into the MS center/specialist directly.

                        So I called the local Neurologist's office who said I would have within a week (which is today) about whether my insurance will cover the MRI and was rudely told by the office staff that they still haven't heard back. It almost sounded as if they had forgotten to make the request to insurance.

                        I think I'm going to try contacting my insurance company directly to find out the status of the request.
                        Good luck - hopefully everything works out with the insurance and MRI appointment.

                        Added stress is certainly not needed.

                        Take Care
                        PPMS for 24 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Welcome to MSWorld, Kevin.

                          It looks like you've already received lots of good advice; I have nothing awesome to add.
                          ~ 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


                            #14
                            I wish you great luck. I hope you will succeed quickly and painlessly. The main thing that the doctor was experienced and kind to the patients

                            Comment


                              #15
                              Hi all - I do have an update I wanted to share. I got a call from the Neurologist's office today and was told that the MRI of the Brain was "normal" and that nothing unusual was noted. I am trying to get clarification on what I should do next, as my symptoms are still occurring.

                              The provider did mention about me seeing a Neuro-Muscular specialist, but I'm not sure if that is worth doing, or if instead, I should try to get in with an MS-Neuro specialist. I don't know what the typical path is, in terms of what type of Provider I should see. I also did get back the results from the Western Blot Lyme test and they were negative, along with the other two (ELISA) tests I previously had done.

                              With this being still very early, is it possible the brain may not display/have any lesions yet formed? Could there be lesions only on the spinal cord, and not on the brain, that would be indicative of MS?

                              Comment

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