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Living La Vita Limbo

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    Living La Vita Limbo

    Hello from limbo! I have started to pop into the chat the past few days and decided that I should probably post up my story of where I am at in the process (and to finally chronicle it for myself). So, here goes nothing:

    My main symptom didn't start becoming noticeable to me until August of last year, while recovering from a traumatic life event. In May of 2018 I had surgery and, 5 days later, a heart attack. In August I started cardiac rehab (exercise) and that is when I started to notice the lose of strength/feeling in my left leg. Periodically I would have a feeling of intense pain at the bottom of the muscle... like someone was doing electroshock therapy on it.

    Being an idiot, I just ignored it. The problem continued to get worse and the pain more frequent until finally, in February of this year, I mentioned it to my Primary Care Provider. She ordered PT and an ECV/EMG. I should note that about this time I was also prescribed zofran for periodic bouts of nausea that, at the time, I blamed on my cardiac meds.

    In May of this year I was finally able to get into neurology for the testing. When she received the results of the ECV/EMG exam, which showed neurogenic changes in the muscle and hyperreflexia, she ordered an MRI of my lumbar spine. The MRI did not show any compression or irritation of the nerves, so my PCP referred me to neurology for follow-up. She also started me on Lyrica for the pain, which was continuing to progress.

    So, in July I was finally able to see my first neurologist, where more MRIs were ordered and reflex testing was done. This time I had an MRI of my pelvis, lumbar spine, and whole spine done. She also increased my dosage of Lyrica. Following the MRI there was a lot of back and forth via e-chart messaging with my neurologist. She ordered lab tests to rule out everything detectable via that type of testing. When nothing showed up in the labs, she ordered another MRI of my spine. At some point during the back and forth I noticed in her notes from the initial visit that I had a positive Hoffman sign response. When I asked her about that and if there was a possibility that this could be MS, she said that it was nothing to worry about.

    I saw her next at the end of August. The MRI of my whole spine showed a minor bulged disk at C5-C6 so she referred me to a neurosurgeon for evaluation and to rule out compression on the column for my symptoms. She also referred me to another neurologist at a large neurology center to see if they could figure it out.

    In September I met with the neurosurgeon. They did an x-ray of my cervical spine and the surgeon determined that there was no compression of the column or of my radial nerves, so surgery was not necessary.

    In early October my wife noticed one of my newest symptoms that I was trying to ignore. I started to drop things at random from both hands. I brought this up with my neurologist on my next appointment. About this time my gait had become so unstable that my wife brought up the use of a cane, which the neurologist agreed with and referred me to PT/OT for both the use of a cane and for a baseline grip-strength evaluation.

    The evaluation showed that my grip strength and coordination was 1/2 of what it should have been and I was given lots of exercises to work to improve them.

    At the end of October (last week) I met with a new neurologist at the large center. I found out, in meeting with him, that his specialty was neuromuscular presentations in MS. Coming into the appointment he had already looked over all of me prior imaging and testing. He did a very comprehensive reflex evaluation and talked at length with myself and my wife about what he had already ruled out and possible causes of my symptoms. We discussed that I was having periodic bouts of nausea, very slight losses of memory and speech, and the fact that I have had two falls and about six "good catches" where I trip but don't fall. He immediately commented that those numbers were way too high for his liking. He then ordered an MRI of my brain and a re-check of my B-12/flexon levels. He also explained that, while he would save it for last, a lumbar puncture was in my future.

    So I had my blood drawn Friday and I am waiting for authorization to come through my insurance to schedule the brain MRI. I keep going through thoughts of being a hypochondriac, being convinced that I just have a B-12 deficiency, and of course thoughts that I have MS.

    I think the worst part of Limbo Land is the fact that my entire life's plan is put on hold until I know just what is really going on and what to expect.

    #2
    Originally posted by McJedi View Post
    I think the worst part of Limbo Land is the fact that my entire life's plan is put on hold until I know just what is really going on and what to expect.
    Hello McJedi and welcome!

    Thanks for sharing your story - you are a very good writer, your summary is very easy to read and understand.

    Originally posted by McJedi View Post
    I think the worst part of Limbo Land is the fact that my entire life's plan is put on hold until I know just what is really going on and what to expect.
    It's not easy to continue with 'business (or life) as usual' with so many thoughts swimming around in the mind.

    Do you think you could take maybe 10 min or so everyday to quiet your mind? There are various techniques you can find by googling relaxation response, meditation, etc.

    In any case, please come back and let us know what you find out from your test results.

    Take good care of yourself in the meantime.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hi McJedi and welcome!

      So glad you came here to tell us your story and also to chronicle your perplexing history of events.
      It sounds like you and your doctors are looking at all angles and doing lots of testing. This is a positive sign that your doctors are taking you seriously.

      Hopefully, an MRI of the brain and a lumbar puncture will help put pieces of the puzzle together. And hopefully, it will not be MS. If it is, then try to move forward to the best of your abilities and get on a DMT. In the meantime, try not to stress about this and find relaxing ways to pass the time. OK?

      Being in limbo is not fun! I was in it for 10 years.

      Be sure to let us know what you find out.
      Take care of yourself!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Thank you so much, KoKo and Seasha, for your warm welcome and words of encouragement. Your sentiments are greatly appreciated and are a great example of what makes MSWorld.org a great resource for everyone.

        I think limbo land is one of the most difficult places to be as it leaves us, the patients, without treatment options and second guessing ourselves about what is going on in our own body. For me it has only been a short travel (so far) but for so many people, like Seasha, it can span a decade or more. What I find most interesting about the pathway through limbo land to diagnosis is that, at least for me, each step closer brings mixed feelings of dread and relief.

        Well, enough pontificating. I actually have two updates to add to this discussion. On Wednesday, after much fighting and constant badgering, I was finally able to schedule my MRI. It will be next Friday and it will be done on a brand new 3 Tesla magnet, ensuring a much higher resolution, although there is research that goes both ways as to the benefits of a 3T MRI versus a 1.5T MRI. My second update is that, as of yesterday, I can now eliminate a B-12 deficiency from the possible causes, as my lab results were all well within the normal range.

        All of this comes as I continue to have difficulties. My fall and "good catch" score continues to go upward (I guess it really can't go down) as I had both a fall and two "good catches" this week. That brings the score in my war against gravity to three falls and eight "good catches". I think I can see why my neurologist was concerned with those numbers. I am somewhat concerned with what we will see when the icy days of winter are upon us?

        Comment


          #5
          Hi McJedi,

          Glad that your testing is moving along. I can understand your mixed emotions. You want an answer, at the same time, do you want the answer they may eventually give.

          Regardless of the diagnosis, maybe you could ask about PT designed for balance and fall prevention? Of course, depending on the cause, it may or may not help. But it can't hurt to explore it.

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

          Comment


            #6
            Originally posted by pennstater View Post
            Regardless of the diagnosis, maybe you could ask about PT designed for balance and fall prevention? Of course, depending on the cause, it may or may not help. But it can't hurt to explore it.
            I agree with pennstater.

            Something else you may want to consider, especially until you know what is causing your symptoms is getting a wheelchair (temporarily). This can help prevent falls or "almost" falls and give you the ability to get around without the fear of falling.
            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


              #7
              Originally posted by McJedi View Post
              I actually have two updates to add to this discussion. On Wednesday, after much fighting and constant badgering, I was finally able to schedule my MRI. It will be next Friday and it will be done on a brand new 3 Tesla magnet, ensuring a much higher resolution, although there is research that goes both ways as to the benefits of a 3T MRI versus a 1.5T MRI. My second update is that, as of yesterday, I can now eliminate a B-12 deficiency from the possible causes, as my lab results were all well within the normal range.
              Thank you for the updates, McJedi. Good luck with your MRI.

              Originally posted by McJedi View Post
              All of this comes as I continue to have difficulties. My fall and "good catch" score continues to go upward (I guess it really can't go down) as I had both a fall and two "good catches" this week. That brings the score in my war against gravity to three falls and eight "good catches". I think I can see why my neurologist was concerned with those numbers. I am somewhat concerned with what we will see when the icy days of winter are upon us?
              Maybe a cane, or rollator would help with staying on your feet?

              When I was still driving, I used a folding, 3-wheel rollator that was very lightweight, easy to fold and put on the floor behind the driver side seat.

              As for ice....no one is safe on ice!

              Take Care
              PPMS for 22 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                Originally posted by pennstater View Post
                Regardless of the diagnosis, maybe you could ask about PT designed for balance and fall prevention? Of course, depending on the cause, it may or may not help. But it can't hurt to explore it.
                Originally posted by SNOOPY View Post
                Something else you may want to consider, especially until you know what is causing your symptoms is getting a wheelchair (temporarily). This can help prevent falls or "almost" falls and give you the ability to get around without the fear of falling.
                Originally posted by KoKo View Post
                Maybe a cane, or rollator would help with staying on your feet?
                Thank you all for the recommendations and support!

                I actually have a referral for PT to look at my gait. Currently I am using a cane which helps overall. Unfortunately I am a little stubborn and don't use my cane to move around my house because, you know, walls and furniture work just fine! And, that is where my last fall occurred. At this point, I think with PT and actually using my cane all the time I will go longer without a fall or "good catch".

                For my upcoming trip I am planning to rent a mobility scooter so that I can actually enjoy myself instead of walking 100 yards and being to tired to go any further... and without falling.

                Originally posted by KoKo View Post
                As for ice....no one is safe on ice!
                Perhaps I just need lots of bubble wrap... then I will bounce. :P

                Comment


                  #9
                  Originally posted by McJedi View Post
                  For my upcoming trip I am planning to rent a mobility scooter so that I can actually enjoy myself instead of walking 100 yards and being to tired to go any further... and without falling.
                  Good for you!

                  Originally posted by McJedi View Post
                  Perhaps I just need lots of bubble wrap... then I will bounce. :P


                  Take Care
                  PPMS for 22 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #10
                    McJedi --

                    Sorry I'm late to welcome you. I do a better job of catching new posts when I'm on my laptop than when I'm on my phone, and, alas … I've mostly been on my phone lately.

                    Thanks for introducing yourself and telling us your story and keeping us updated.

                    I use a cane when I leave the house. I get by without out, and even without wall-walking, when I'm at home. I'm a little slow to answer the door, and, if I don't keep my phone near me, I'll possibly miss a call.

                    My outdoor endurance distance, though, is similar to yours -- 100-200 feet. I'd be concerned, too, if you seem to be having frequent falls. I've had only 2 falls in the past three years -- one was getting out of my daughter's bathtub and it had nothing to grab on to; the other was a month or two ago in the hallway at the Rec Center as I was leaving. There was no obvious reason for the fall except fatigue after a workout -- nothing to trip on, etc. My fatigue tends to be worst in my right leg.

                    In addition to my cane, I do use a power chair when I go places that require more walking. I'm glad you rented something that can help you on your upcoming trip.
                    ~ 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
                      In my short time visiting MS World, I have read and heard a number of accounts from people living in limbo or who are finally diagnosed after years. Quite often there are expressions of frustration, depression, and even self-doubt.

                      After meeting with my neurologist last month, I felt assured that I was lucky and had found a shortened path through limbo land. That feeling of confidence in being close to a diagnosis was reassured by the findings of my last set of labs, ruling out (once and for all) a vitamin B-12 deficiency. The last step was to have an MRI of my brain to detect the signature legions of Multiple Sclerosis.

                      Over the first two weeks of November, there was a lot of back-and-forth with my neurologist's office, my insurance, and the imaging center, all of which culminated in the completion of the MRI of my brain last Friday afternoon. Going into the MRI, I was nervous; after all this could provide the definitive information needed to provide a diagnosis and move me from limbo land into a place where there are treatment options beyond just pain management.

                      As a teen I enjoyed hiking among the redwoods and scrub oak of Northern California. Some of my hikes were simple leisurely strolls amongst the towering monuments to time. Other hikes were tiring and rigorous climbs over rapidly ascending switchback trails. On those more difficult hikes there was always the knowledge that there was an end to the trail. That was an important motivating factor that helped me focus when I reached the top of a ridge only to find a steep decent followed by yet another set of steep switchbacks.

                      Last night I received the radiologist report: “1. Minimal scattered foci of signal abnormality in the supratentorial white matter which can be seen in migraines, demyelination, or small vessel vasculopathy. 2. Otherwise negative exam.”

                      No lesions on my prefrontal cortex to explain my incontinence. Not a word about foci on the cerebellum explaining why I randomly drop things and am losing coordination in my left hand or why I have lost feeling and use of a muscle in my left leg. I am frustrated, depressed, and full of self-doubt. I am on a trail through limbo land, and I am not really sure that there is an end to the trail. All I can see are miles and miles of ascending switchbacks.

                      Perhaps I am crazy and have brought all of these problems on myself? Is this all just a psychogenic disorder brought on by stress?

                      Comment


                        #12
                        Hi McJedi ~

                        Wondering if you have had a cervical spinal cord MRI?
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Originally posted by KoKo View Post
                          Hi McJedi ~

                          Wondering if you have had a cervical spinal cord MRI?
                          Yes. Twice actually... Nothing there either.

                          Comment


                            #14
                            I'm sorry to hear that your MRI did not yield an answer for you. I hope you find out something soon, so you can take your life off of being on hold.
                            ~ 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


                              #15
                              Originally posted by McJedi View Post
                              Last night I received the radiologist report: “1. Minimal scattered foci of signal abnormality in the supratentorial white matter which can be seen in migraines, demyelination, or small vessel vasculopathy. 2. Otherwise negative exam.”
                              Your neuro should explain the MRI findings to you at your follow-up appointment.

                              Originally posted by McJedi View Post
                              No lesions on my prefrontal cortex to explain my incontinence. Not a word about foci on the cerebellum explaining why I randomly drop things and am losing coordination in my left hand or why I have lost feeling and use of a muscle in my left leg.
                              It's a clinical-radiologic paradox that symptoms do not always correlate with visible lesions on MRI.

                              Since many lesions seen on MRI may be very small, have caused very little damage, or the brain has developed a work around, it is not always possible to make a specific correlation between what is seen on the MRI scan and your clinical signs and symptoms. Generally lesions in smaller areas, such as the brainstem, the spinal cord or the optic nerve are likely to produce signs and symptoms.

                              https://www.nationalmssociety.org/Sy...sing-Tools/MRI
                              PPMS for 22 years (dx 1998)
                              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                              Comment

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