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    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 Iím really nervous that disability or maybe even dying young (Iím 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.

    #2
    Anomaly2017 ~

    Glad to know that you have health insurance now, and are seeing the neurologist.

    I can understand your anxiety, wondering what is causing your symptoms and worrying about various possible outcomes. It's no fun.

    If possible, give yourself some mental breaks from the worrying. Even if only for just a couple of hours a day, try and get your mind on other things to focus on. Your mind and body will thank you.

    Originally posted by Anomaly2017 View Post
    The atrophy in my left hand, gluteal muscles and left foot was extremely concerning to doctor.
    Originally posted by Anomaly2017 View Post
    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.
    My non-professional opinion is that a large degree of atrophy, before an MS diagnosis, would not be "typical". Perhaps possible, I don't know, but that is a question better answered by your doctor.

    I have some degree of atrophy of the muscles on my entire right side, from shoulder down to foot, but then I have had Primary Progressive MS for almost 20 years now.

    I'm sorry that you are going through this rough time of uncertainty, it's not easy.

    Wishing you peace of mind as you go through the process of testing. You may find out that the outcome is better than expected.

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

    Comment


      #3
      I can't speak on that topic. I understand that brain atrophy is a common result from living with MS. But I have read this site for many years and have not seen a lot of posts regarding this.
      But my question to you is... Are you consulting with an MS specialist ? That should be of primary concern ! Also you should be on an MS treatment, if you truly have an MS diagnosis. I wish you the best of luck.

      Comment


        #4
        I can't answer your atrophy question either. But, my MS, during my first year prior to diagnosis and treatment, was much worse than it has tended to be since then. I experienced mobility issues, severe disabling dizziness, mania, psychosis, severe short term memory loss, fatigue to the point of sleeping 16-20 hours per day, etc. Mostly, I think, because I was in a big MS flare that seemed unable to resolve itself. When I was finally, many months later, put on steroids, I began, slowly, to improve. I was off work for a total of 8 months.

        Is it possible that what you believe is atrophy and permanent residual symptoms are just the temporary symptoms of a flare that might resolve itself? I suspect that an MRI will be able to tell the doctor if there is current inflammation going on and if you are currently experiencing a flare (of either MS, if that's what it is, or whatever other neurological issue that you have).
        ~ 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


          #5
          Updating my situation. I had an EMG/NCS which was essentially normal with some minor abnormalities. So I can cross ALS off the list of possibilities. That would be a major abnormality.


          I have an MRI of brain, brain stem, neck, and orbits I have to schedule. Fitting it into my day with my work schedule has been challenging.


          Has anyone ever had an MRI with contrast at night? I ask because Iíve called three places and they all say they donít do contrast exams at night. By at night I mean after 6pm. Really making this hard to schedule.


          I did have brain atrophy on previous MRI with demyelination as well.


          Right now itís just a regular neurologist but if this upcoming MRI points even more to MS I will see an MS specialist.


          Symptoms so far just continue to progress. If itís MS it has primary progressive written all over it. Now the area above my left knee is numb for no obvious reason. These random jolts of pain are no fun either. The tingling will go away at times but itís become most prominent in the face on left side.


          Iím relieved itís not ALS but MS isnít exactly ideal to put it nicely.

          Comment


            #6
            I've never had any MRI after 6 pm. I don't think they schedule them here, except during "business hours".

            Glad it's not ALS. And, yeah -- MS isn't ideal. But, either is your health. If your health was ideal, you wouldn't be having symptoms and tests and seeing a neurologist. After awhile, the most ideal we can hope for might be a diagnosis so that we can learn about our illness and figure out how to go on with our lives.
            ~ 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


              #7
              Sorry for your symptoms. I wouldn't jump to conclusions that PPMS if MS.

              On the atrophy, I had a conversation once about this with 1st neuro. He said you may see it with MS, partly due to deconditioning as people become less mobile or have issues that prevent specific muscles from moving normally (not that MS is a muscle related disease, but they may be collateral damage). I haven't had this conversation with current neuro.

              As for MRI, I had contrast at night twice early on. Maybe it could be a function of the technician working at night? Or if you have a reaction to the dye, who may be available to treat? Or maybe a radiologist isn't there at night? The other possibility is the overall length of time the MRIs of brain and c-spine take. Adding contrast may push the completion time past the hours they do testing.

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

              Comment


                #8
                Had MRI of Brain and Brainstem done. The other areas were denied by insurance company. So itís on hold for now. Appointment with neurologist to go over results next week.

                Ankle swelling has developed on left ankle which is the foot with the atrophy. Guessing that wouldnít be MS related but my altered gait walking with the padding of left foot much smaller then right. Slightly painful too. Intermittent blurry vision now starting.

                I canít wait for next week to hopefully get some answers. Donít expect a crystal clear picture of whatís going on as I read diagnosis can take a long time in MS and in other diseases as well.

                Comment


                  #9
                  Originally posted by Anomaly2017 View Post
                  Had MRI of Brain and Brainstem done. The other areas were denied by insurance company. So itís on hold for now. Appointment with neurologist to go over results next week.

                  Ankle swelling has developed on left ankle which is the foot with the atrophy. Guessing that wouldnít be MS related but my altered gait walking with the padding of left foot much smaller then right. Slightly painful too. Intermittent blurry vision now starting.

                  I canít wait for next week to hopefully get some answers. Donít expect a crystal clear picture of whatís going on as I read diagnosis can take a long time in MS and in other diseases as well.
                  Thanks for the update. Glad that you had your brain and brainstem MRI's done.

                  Good luck at your appointment next week. Hoping for you that you will get some answers.

                  Let us know what you find out.

                  Wishing you a low-stress, good week while you wait.

                  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


                    #10
                    I was able to view my MRI on the radiology center patient portal. Itís inconclusive.

                    The impression is as follows, ďModerate asymmetric enlargement of the left hippocampal formation with associated abnormal T2 hyperintensity. Abnormal asymmetric T2 hyperintensity also involves the left parahippocampal gyrus with corresponding ill-defined susceptibility weighted hypointensity. While nonspecific, these findings may represent a region of cortical dysplasia or alternatively a neoplasm. Follow-up gadolinium-enhanced MRI examination of the brain is recommended for further characterization. Correlation with EEG results is also recommended.

                    A few scattered foci of T2 hyperintensity involving the supratentorial white matter, with differential considerations as above.Ē

                    The above mentioned possibilities listed are chronic microvascular ischemic changes, vasculitis, migraine, Lyme disease, or less likely demyelinating disease.

                    I did have an EEG done so Iíll find out results of that at appointment later this week.

                    So pretty much have more questions then answers after that MRI. Guess itís pointing away from MS with demyelinating disease being considered less likely. Microvascular ischemic changes would be odd for someone in their early 30ís. Migraine wouldnít fit as I only get headaches when I miss a caffeinated beverage. I donít know what vasculitis is so I canít comment on that. Donít have the bullseye rash associated with Lyme but do have the neurological symptoms.

                    The part about cortical dysplasia or alternatively a neoplasm is over my head. No idea what that area is.

                    Comment


                      #11
                      Thanks for the update. Hope someone can help you interpret your results.
                      ~ 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


                        #12
                        Anomaly,
                        Are you sure that your thread topic is correct, " Finally Seen a Neurologist"? I think your choice of words should read as "Finally Seed a Nuerologist" ! I can see that you are stressed out but it doesn't matter when your MRI is done, daytime, lunchtime, bedtime, or whatever. The MRI techs will operate the equipment anytime, as long as they do the job as professionals, which , no doubt, they are. Most importantly, you need to go over the radiologists reports with your neurologist. If you aren't trained in either of those specialties, you are worried about things that are out of your control. Stop worrying. It won't do you any good! Good luck !

                        Comment


                          #13
                          I can't answer the medical questions about your MRI but I CAN say about the no late MRI...what that is, is no late MRI WITH CONTRAST.

                          Let me explain: Around here, most imaging places will do imaging until around 10 pm (not talking about hospital s but places specific to just imaging). However, they will only do contract MRIs when there is a radiologist present in case there is any reaction in the patient to the contrast (that is the gadolinium-enhanced). Both my brain and c-spine were with and without contrast so I had to make sure I did them during normal business hours when a radiologist was present. Apparently they don't work them after normal business hours.

                          Comment


                            #14
                            I've gotten nowhere as far as getting any closer to a diagnosis of anything. Just more atrophy and tingling that never goes away at this point. I'm amazed not a single doctor has ordered a spine MRI. Even MS aside I could see a spine issue causing these issues. So now I have an appointment with an MS and neuromuscular specialist for mid-April. Hoping this will result in finally getting an answer. Sick of the uncertainty. Even if it's a devastating diagnosis, I just want to know what I'm dealing with.

                            Comment


                              #15
                              Originally posted by Anomaly2017 View Post
                              I've gotten nowhere as far as getting any closer to a diagnosis of anything.
                              So sorry to hear this, Anomaly.

                              Originally posted by Anomaly2017 View Post
                              Just more atrophy and tingling that never goes away at this point. I'm amazed not a single doctor has ordered a spine MRI.
                              Agree that it doesn't make sense to omit a spine MRI from your tests.

                              Originally posted by Anomaly2017 View Post
                              Even MS aside I could see a spine issue causing these issues. So now I have an appointment with an MS and neuromuscular specialist for mid-April. Hoping this will result in finally getting an answer. Sick of the uncertainty. Even if it's a devastating diagnosis, I just want to know what I'm dealing with.
                              Hopefully the new specialists will be able to give you some answers.

                              You have been waiting for so long - but mid April will be here before you know it.

                              Good luck and let us know what you find out.

                              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

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