Announcement

Collapse
No announcement yet.

Living La Vita Limbo

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Thank you, KoKo and Mamabug, for your responses and continued support.

    Originally posted by KoKo
    Your neuro should explain the MRI findings to you at your follow-up appointment.
    Unfortunately, my next appointment isn't until December 23rd. I did send a message to my neurologist indicating that I would like to discuss the results once he has had an opportunity to review it himself.

    Comment


      #17
      Originally posted by McJedi View Post
      Unfortunately, my next appointment isn't until December 23rd. I did send a message to my neurologist indicating that I would like to discuss the results once he has had an opportunity to review it himself.
      As I recall, my follow-up appointments for discussing initial test results were never treated as a 'rush job' either, and I also had to wait a few weeks.

      Take Care
      PPMS for 23 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #18
        Hello Mcjedi and welcome to msworld. I'm sorry your life is turned up side down right now with many sx's and no answers. I may have missed it but was the mri done with contrast?

        I wish you the best finding answers.
        God Bless Us All

        Comment


          #19
          Originally posted by REG53 View Post
          Hello Mcjedi and welcome to msworld. I'm sorry your life is turned up side down right now with many sx's and no answers. I may have missed it but was the mri done with contrast?

          I wish you the best finding answers.
          Yes, the MRI was with and without contrast.

          Comment


            #20
            Hi McJedi.

            It's always possible that something else may be going on and it might not be Multiple Sclerosis. The tests that have been positive has been the Nerve Conduction Velocity (NCV) and the Electromyography (EMG) tests. These tests, if positive, do not indicate MS, but usually a problem with the Peripheral Nervous System (PNS).

            Both of these tests, if positive, indicates problems outside of the Central Nervous System(CNS). These tests are not part of the diagnostic criteria used for MS. Multiple Sclerosis is a disease of the Central Nervous System(CNS).

            I will provide a few links that might help you to understand.

            Information about the Nerve Conduction Velocity and possible uses (diagnosis):
            https://www.urmc.rochester.edu/encyc...ntentid=P07657

            Information about Electromyography (EMG) and possible uses (diagnosis):
            https://www.mayoclinic.org/tests-pro...t/pac-20393913

            Information about the diagnosis of Multiple Sclerosis (diagnostic criteria):
            https://www.nationalmssociety.org/Sy.../Diagnosing-MS

            Some of the other possible causes for a person's symptoms:
            https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

            Multiple Sclerosis has a very long history of misdiagnosis so it is very important for you Physicians and yourself to be cautious when determining a diagnosis of MS.

            https://www.everydayhealth.com/multi...ple-sclerosis/
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #21
              Originally posted by SNOOPY View Post
              Hi McJedi.

              It's always possible that something else may be going on and it might not be Multiple Sclerosis. The tests that have been positive has been the Nerve Conduction Velocity (NCV) and the Electromyography (EMG) tests. These tests, if positive, do not indicate MS, but usually a problem with the Peripheral Nervous System (PNS).
              Thank you for all of this great information.

              Comment


                #22
                First, let me express my apologies to anyone who was following my saga for going so long without an update. So much, yet so little, has occurred since my last update.


                In early December I visited an Optometrist, as I had noticed changes in my eye sight, including difficulty seeing at night and some pain behind the eye. During the visit with my Optometrist I mentioned the pain that I was experiencing, which I had narrowed do to occurring when looking peripherally. The main part of my visit went as expected; I was informed that I needed glasses for both near and far vision. What I didn’t expect was the Optometrist’s final statement that I needed to inform my Neurologist about the pain, as it may be a sign of “a neurological problem”. I thought to myself “is there no aspect of my life that my Neurologist will be involved in?”

                Following the directions of my Optometrist, I logged on to the patient portal for my Neurologist and sent off a simple message stating that I had seen my Optometrist due to vision issues and that my Optometrist indicated to me that I needed to let Neurologist know that during the visit I mentioned having pain when looking to the peripheral (up/down/left/right). A couple of days later I received a message back indicating that my Neurologist is referring me to an Ophthalmologist. There was some back and forth as we found the correct medical professional in my area, settling on a highly recommended Neuro-ophthalmologist.

                The referral was sent and within 24 hours I received a call from the office of the Ophthalmologist. I was expecting them to tell me that they were currently booking appointments into February or March (which is the norm for any specialty in my area) and was surprised, if not frightened, by the offer of an appointment just 2 days later. I laughed at the fact that I would get to see a Neuro-ophthalmologist faster than seeing my own Neurologist.

                My appointment with the Neuro-ophthalmologist was extensive. She examined my optic nerve (the portions visible at least), tested my vision and color acuity, and reviewed my brain MRI. She then asked about the onset of the symptoms in relation to the date of my brain MRI. I explained that I had not noticed the symptoms until several weeks after the MRI. She seemed to struggle with this and expressed that she would leave it up to my Neurologist to decide if a new MRI was warranted.

                The good news was that she did not see any signs of a lesion on the optic nerve and that this finding, coupled with the lack of a deficit in either field of vision or color discernment, indicated that the problem was not Optic Neuritis. She provided me eye drops to address dryness in my eyes and scheduled a follow-up appointment for three weeks later.

                I'll stop here to keep the post from running on too long (too late). More to come...

                Comment


                  #23
                  Originally posted by McJedi View Post
                  Unfortunately, my next appointment isn't until December 23rd. I did send a message to my neurologist indicating that I would like to discuss the results once he has had an opportunity to review it himself.
                  Hi McJedi ~

                  How did your follow-up appointment go?

                  Did your neuro discuss MRI results?

                  Thanks!
                  PPMS for 23 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #24
                    On December 23rd I saw my Neurologist again. This appointment was scheduled as a procedure appointment, as he wanted to conduct a more thorough EMG/NCV than my previous Neurologist had conducted. Specifically, he wanted to look at my entire left side as compared to the previous study that focused on the muscle in my left leg. Between the shocks and pins I did have an opportunity to discuss the MRI findings with my Neurologist. He stated that the findings were unremarkable, and the spots (T2 Flairs) were consistent with someone of my age and medical history. He added that the normal MRI findings made the EMG/NCV even more important in determining what was going on. The appointment concluded with scheduling a return visit on January 13th to discuss the findings. Once again, I left my appointment with more questions than answers and a feeling of frustration.

                    In between my EMG/NCV visit with my Neurologist and the return visit I had my follow-up visit with my Neuro-Ophthalmologist. She conducted a field of view study and looked at my optic nerve again. Happily, she found nothing abnormal and prescribed me steroid eye drops to address the dryness of my eyes. A return appointment was scheduled for 6 weeks out to determine if things were stable, improving, or detreating.

                    Soon enough, January 13th was upon me and I made the two hour drive down to Seattle through our first snowstorm of the season. I arrived early for my appointment and waited eagerly to see my Neurologist. About 15 minutes after the schedule appointment time I was approached by a member of the clinic staff to inform me that my Neurologist needed to reschedule the appointment, as he would not be in. I should note that this was the first Neurology appointment that my wife was not able to attend to support me emotionally. I mustered all of my emotional fortitude and worked with the team to find the next available appointment, which was not until January 27th. When I got back to my car, I broke down and cried.

                    When I got back home, I decided to send my Neurologist a message via the patient portal to ask him to provide me the results prior to the rescheduled appointment. I wanted answers and the fact that I was about to travel with my wife to celebrate our 25th anniversary added an urgent desire for closure or at least a sense of direction. Three days later I received a simple two sentence response from my Neurologist. He wrote “your EMG study was normal. Now with normal labs and imaging, there does not seem to be a neuropathologic condition in play.” I felt conflicted. I should have been relieved by those words, yet there I was only knowing what wasn’t wrong with me. If there was nothing there, then was this a psychological issue? Had I become a hypochondriac? My head was swimming with questions and I realized why doctors insist on talking to patients in office visits over responding to messages in patient portals.

                    So, I was off to Disneyland to celebrate my anniversary, trying to put all of my concerns out of my mind. Unfortunately, that only lasted through the first few hours of visiting the “Happiest Place on Earth”. I had already planned to have a mobility scooter rental available and set my expectations appropriately for navigating the crowds and the que lines. What I did not think about was the challenges that the rides would present. I quickly found out that my neurological problem, that was not detectable via any testing, made it from uncomfortable to downright painful to enjoy the rides I had always enjoyed. By the end of the first day I was exhausted and in pain.

                    I would have accepted the exhaustion and pain if they were not the only symptoms. Unfortunately, at about 1:00 AM I woke up with another symptom that told me my body had been overstressed through vomiting and… well you get the picture. Initially I thought that, perhaps, I had a case of food poisoning, but that thought was put to rest as my wife, who had shared every meal with me, slept peacefully in the other room. As quickly as the symptoms came on, they subsided, and I was back to bed… a little worse for the wear. The remaining three days of the vacation I played it safe and kept to the mild rides and took a nap each day. Overall, I enjoyed my time on vacation, but the specter of my undiagnosable problem loomed throughout and permeated my thoughts.

                    Returning home, I found that my level of exhaustion was unusually high as I fought to recover from my vacation. I also found that a new problem developed, pain across my shoulders, following down my spine and branching out again at my lumbar spine… forming a sideways “H” shape (I originally used “I” shape here and quickly realized that not all fonts have the shape I was looking for).
                    Yesterday I finally was able to meet with my Neurologist to discuss, in person, the findings of the EMG/NCV. I was expecting him to simply repeat what he had stated in the message to me, but was pleased to find that he went over, in detail, what was tested and what the results were. He explained that the fact that all the measurements were “normal” indicated that the problems I have been experiencing were not related to any peripheral neuropathy, and that it is clear the problem is in my spine and/or brain. He added that this is consistent with his initial physical evaluation. Finally, he explained that the labs, which were very extensive and thorough, had ruled out almost all the “bad stuff” and that the normal imaging ruled out the last of what he called the “big bad causes, like MS”.

                    When asked what the next steps are, he indicated that he would like to have a rheumatologist evaluate me to determine if there was something within their realm causing the symptoms. I could tell by the way he was discussing the referral that he did not have much confidence that something would be found, so I pressed him about the next step… if nothing was identified. His answer was a non-reassuring “Then we will just keep looking.”

                    At this point, I am left without much faith in any future besides Limbo and a serious consideration of seeking a second (or is it third) opinion. I would happily accept an answer of what it is not… so long as I also have an answer of what it is. I am also concerned that his ruling out MS is based entirely on the MRI which, from my understanding is not the sole indicator of MS.

                    Comment


                      #25
                      Originally posted by McJedi View Post
                      I am also concerned that his ruling out MS is based entirely on the MRI which, from my understanding is not the sole indicator of MS.
                      Appreciate your thorough and interesting reply, McJedi.

                      I'm glad for you that your neuro took the time to explain the test results to you.

                      You still don't have an explanation for your symptoms, though, which has to be awfully frustrating for you.

                      It's hopeful that your neuro said that he will keep on looking for answers.

                      Originally posted by McJedi View Post
                      I am also concerned that his ruling out MS is based entirely on the MRI which, from my understanding is not the sole indicator of MS.
                      In order to make a diagnosis of MS, the physician must:

                      "Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

                      Find evidence that the damage occurred at different points in time AND

                      Rule out all other possible diagnoses

                      The Revised McDonald Criteria, published In 2017 by the International Panel on the Diagnosis of Multiple Sclerosis, include specific guidelines for using MRI and cerebrospinal fluid analysis to speed the diagnostic process.

                      The MRI can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as clinically-isolated syndrome (CIS). The MRI can also be used to confirm that damage has occurred at two different points in time.

                      In some circumstances, the presence of oligoclonal bands in a person's cerebrospinal fluid analysis can be used instead of dissemination in time to confirm the MS diagnosis"

                      https://www.nationalmssociety.org/Sy.../Diagnosing-MS

                      Can't remember if you've had a cerebrospinal fluid analysis?
                      PPMS for 23 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #26
                        Originally posted by KoKo View Post
                        Can't remember if you've had a cerebrospinal fluid analysis?
                        Unfortunately, he has decided that a spinal tap is not necessary, as the imaging was normal.

                        Comment


                          #27
                          Originally posted by McJedi View Post
                          Unfortunately, he has decided that a spinal tap is not necessary, as the imaging was normal.
                          Ok, thanks McJedi.

                          Maybe he'll consider it, over time.
                          PPMS for 23 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #28
                            Thanks, McJedi, for the updates.

                            I was in limbo for almost two years. Over time, my symptoms looked more like MS, my MRI's looked more like MS, etc. Even if current testing didn't yield an explanation or a diagnosis, no matter what this is (MS or something different), time will likely make it all more clear.

                            In the meantime, I'll give you advice that I often throw out -- take care of yourself:
                            - Reduce stress. Pamper yourself when you have opportunities. Spend time with friends and family and doing activities you enjoy. Listen to relaxing music. Consider mindfulness and / or meditation.
                            - Eat a healthy diet. Include lots of fruits and especially vegetables. Consider eliminating gluten, dairy and refined sugar. Consider an MS diet and lifestyle, such as Wahls Protocol. Wahls Protocol can be a healthy choice for people with MS, other autoimmune diseases, other chronic illnesses and even just the general population.
                            - Exercise regularly. Consider a variety of exercise activities -- cardio, strength, yoga, even just purposeful movement. But, listen to your body too. Don't overdo it or push yourself too hard.
                            - Get enough sleep. If it's hard to fall asleep, consider medication, mindfulness, listening to your breath, going to your "happy place" in your mind, taking a supplement (such as Valerian) to help, etc.
                            ~ 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


                              #29
                              It has only been a couple of days since I last saw my neurologist and everyday I have had the nagging feeling that something did not feel right out the last visit. Perhaps it was his declaration that there was not a "neuropathologic condition in play", the refusal to do a lumbar puncture, or the feeling that he was trying to pass me off to a rheumatologist that was pushing me to take action. I can't say for sure which, if not all, caused it... but yesterday I decided to start the self-referral process for The Mayo Clinic in Rochester, Minn.

                              I feel as though I should... scratch that, I DESERVE to have a better answer than "I can't find anything, so... *shoulder shrug*"

                              I am also pursuing a second opinion from a neurologist at the University of Washington neuroscience department. Nothing like keeping my options open, right?

                              Comment


                                #30
                                Originally posted by McJedi View Post
                                I am also pursuing a second opinion from a neurologist at the University of Washington neuroscience department. Nothing like keeping my options open, right?
                                Right - you certainly deserve a 2nd opinion! I live in Washington and have heard good things about the UW neuroscience dept. Good luck to you. Hope you don't have too long a wait!

                                And be sure to fill us in with what you find out.
                                1st sx '89 Dx '99 w/RRMS - SP since 2010
                                Administrator Message Boards/Moderator

                                Comment

                                Working...
                                X