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Finally Seen a Neurologist

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    #16
    I just need to put in my 2 cents worth. I have officially been diagnosed with MS over 35 years. I would have multiple attacks per year with all the symptoms you have presented and a few more. They treated me with large dose prednisone during these exacerbations. I have been on Betaseron and Avonex. My neurologist took me off all MS meds because I have been stable since late 2002 with no further progression seen on scans.

    The best advice I can give you is to see a MS specialist for a proper diagnosis and get on one of many MS drugs that would be recommended by your neurologist. For years I have worn compression stockings for edema. Without them my legs would swell and throb.

    It sounds that you were well beyond the point where you should be seen by a neurologist if you were at the point of muscle atrophy. That alone would have me concerned. I would think seeing a good physical therapist can give you exercises that could help with this. Your doctor could give you a consult to see one so it could be covered by your insurance.

    I do daily exercises which are a HUGE pain but it helps me. My entire left side is compromised like I had a stroke. I am paralyzed from waist down had spinal fusion with rods and screws and I have a Medtronic Baclofen pump that is know being filled with Prialt for spazm control.
    Rich

    Anomaly2017
    Finally Seen a Neurologist
    Finally got health insurance and got in to see a neurologist. Unfortunately my situation appears to be very serious. Without me even mentioning it Multiple Sclerosis was the first possibility raised based on my evaluation and prior MRI. Tingling, spasticity of left arm, double vision, impaired coordination, hyperreflexia and atrophy. The atrophy in my left hand, gluteal muscles and left foot was extremely concerning to doctor.

    Other differentials range from thyroid disease to ALS. EMG and MRI are being scheduled. Blood work was drawn. So now I’m really nervous that disability or maybe even dying young (I’m only 31) is becoming a reality. I can still function right now as long as I stay away from stairs and wear shoes. Walking barefoot is hard due to atrophy in left foot.



    My question is about atrophy. Is it typical to occur to this extent? Not a lot about muscle atrophy in MS on the internet. Mainly refers to brain atrophy. Atrophy searches tend to produce ALS sites.

    Any insight would be appreciated.

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      #17
      I have an appointment with an MS and Neuromuscular specialist on Thursday. Thankfully as these symptoms are just continuing to progress. This one potentially severely life altering. Does anyone have difficulty walking on wet surfaces? This symptom just started today. Or at least just noticed as it hasn’t rained that much prior. Walking was like walking on ice. It rains daily in Florida in the summer and I do a lot of walking to and from work. I’m nervous about my future.

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        #18
        Originally posted by Anomaly2017 View Post
        I have an appointment with an MS and Neuromuscular specialist on Thursday. Thankfully as these symptoms are just continuing to progress.
        Good luck, Anomaly. Glad that you have the appointment Thursday.

        Originally posted by Anomaly2017 View Post
        Does anyone have difficulty walking on wet surfaces? This symptom just started today. Or at least just noticed as it hasn’t rained that much prior. Walking was like walking on ice. It rains daily in Florida in the summer and I do a lot of walking to and from work. I’m nervous about my future.
        Is it the feeling like you have difficulty with your sense of position or your balance, when your eyes see the shiny pavement?

        When I was still able to walk without mobility aids, I had difficulty walking on wide open, shiny department store floors. I remember that I would have to cut over to the carpeted areas with the clothing racks to regain my sense of position and balance.

        It was quite baffling to me at the time.

        In any case, let us know how your appointment goes.

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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          #19
          I don't know if it's my feet or eyes but when walking on wet or uneven surfaces my body stops working right. Balance becomes so off that I take the smallest of steps to avoid falling. If I'm not careful I actually start to trip up. Luckily I've stopped myself from actually falling. I'm considering getting a cane for rainy days at this point.

          Had my appointment yesterday and not surprisingly MS was the main concern after history and exam. Was ordered to have to a cervical MRI and a spinal tap. He went over the images of my previous brain MRI and one of the lesions was suspicious to him. Lab tests were also ordered to rule out other causes of these symptoms.

          A bit scary to be in this position but at least I'm going to get some answers.

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            #20
            Originally posted by Anomaly2017 View Post
            I don't know if it's my feet or eyes but when walking on wet or uneven surfaces my body stops working right. Balance becomes so off that I take the smallest of steps to avoid falling. If I'm not careful I actually start to trip up. Luckily I've stopped myself from actually falling. I'm considering getting a cane for rainy days at this point.
            Good idea, Anomaly. When I first started to use a cane, it really made a huge difference in my walking.

            Originally posted by Anomaly2017 View Post
            Had my appointment yesterday and not surprisingly MS was the main concern after history and exam. Was ordered to have to a cervical MRI and a spinal tap. He went over the images of my previous brain MRI and one of the lesions was suspicious to him. Lab tests were also ordered to rule out other causes of these symptoms.

            A bit scary to be in this position but at least I'm going to get some answers.
            Good luck with your tests. Let us know how things go.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #21
              So I think I dodged the MS bullet. Cervical MRI negative for any signs of demyelination and spinal tap showed oligoclonal bands but they were in both spinal fluid and blood. Which to my understanding points away from MS. May point to something else but don’t really know. Haven’t seen doctor yet but patient portal allows me to see results before hand.

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                #22
                Originally posted by Anomaly2017 View Post
                So I think I dodged the MS bullet. Cervical MRI negative for any signs of demyelination and spinal tap showed oligoclonal bands but they were in both spinal fluid and blood. Which to my understanding points away from MS. May point to something else but don’t really know. Haven’t seen doctor yet but patient portal allows me to see results before hand.

                Anomaly ~

                Thanks for the update.

                You're much closer now to getting some answers. Please let us know what you find out at your neuro appointment.

                Wishing you the best.

                Take Care
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #23
                  Originally posted by Anomaly2017 View Post
                  I don't know if it's my feet or eyes but when walking on wet or uneven surfaces my body stops working right. Balance becomes so off that I take the smallest of steps to avoid falling. If I'm not careful I actually start to trip up. Luckily I've stopped myself from actually falling. I'm considering getting a cane for rainy days at this point...
                  I've had MS for 16 years. I started using a cane every time I leave the house in February. Making the initial decision can be difficult but I'm really glad that I did.
                  • It gives me extra support and better balance when I walk.
                  • It is especially helpful when I walk on uneven ground or stepping down a curb.
                  • Others (both strangers and acquaintances) seem more courteous. They let me go first, they move out of the way, they hold doors open, 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.

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