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    #16
    Hi Kevin ~

    Originally posted by kdrymer View Post
    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.
    Thanks for the update.

    Good news that your brain scan is normal, and nothing unusual to note.

    Originally posted by kdrymer View Post
    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.
    When you say 'Provider', are you talking about your neurologist, as the one who wants you to see a Neuro-Muscular Specialist?

    Originally posted by kdrymer View Post
    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?
    My non-professional answer is yes, it's possible - to both questions.

    Do you have a follow-up appointment scheduled with your neuro? If so, let him know your concerns and questions.

    He may want to refer you for a second opinion, since you are still experiencing symptoms.

    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


      #17
      Hi Kevin, So many great responses to your question.

      I read your first post about processing venison more than once, and was wondering if you and your doctors already ruled out CWD . Perhaps this is something you’re already very careful about, but just thought I’d ask.

      I’m sending peaceful thoughts and hope you and your doctors are able to get to the bottom of this.

      **URL removed by Moderator in compliance with MSWorld Guidelines. (Not MS related) This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**
      Last edited by Seasha; 05-29-2019, 01:59 PM.
      All the best, ~G

      Comment


        #18
        Originally posted by gargantua View Post
        Hi Kevin, So many great responses to your question.

        I read your first post about processing venison more than once, and was wondering if you and your doctors already ruled out CWD . Perhaps this is something you’re already very careful about, but just thought I’d ask.

        I’m sending peaceful thoughts and hope you and your doctors are able to get to the bottom of this.

        **URL removed by Moderator in compliance with MSWorld Guidelines. (Not MS related) This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**
        Hi all - Yes I considered CWD and Brucellosis but it seems at least with Brucellosis that the typical early symptoms are fever, sweating, and show low white and red cell blood counts, as well as gastrointestinal symptoms, which I have not shown any of these. I'm glad that the brain MRI showed as normal, with no signs of optic neuritis, but I've heard that in the early stages of MS that lesion activity may not show up on an MRI, but I don't know how accurate this is. I think I am going to try to make an appointment with the Neuro-Muscular specialist at this point and see what he/she's reccomendation is. I also am still considering seeing the Lyme specialist who uses a private lab in CA (Igenix) that supposedly has more accurate testing protocols than the CDC methods.

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          #19
          Something else that I wanted to share that seems to be occuring more frequently now. I've noticed at night, while trying to fall asleep that the left side of my face has had some involuntary muscular twitching, mostly around my upper cheek area. This can be alleviated by turning over and sleeping with my left side of my face lying on the pillow. I also will get this random itching in my face. I did a little research and it seems these may be referred to as Hemifacial spasms. Just wondering if anyone has experienced these early on in their MS journey?

          Comment


            #20
            Originally posted by kdrymer View Post
            Something else that I wanted to share that seems to be occuring more frequently now. I've noticed at night, while trying to fall asleep that the left side of my face has had some involuntary muscular twitching, mostly around my upper cheek area. This can be alleviated by turning over and sleeping with my left side of my face lying on the pillow. I also will get this random itching in my face. I did a little research and it seems these may be referred to as Hemifacial spasms. Just wondering if anyone has experienced these early on in their MS journey?
            Hi K,

            I was told I've probably had MS for 20 years. I have had facial tics here and there, but so many different things can cause those, including stress. My main symptoms early-on were visual.

            You might not encounter another person with MS who can bolster a diagnosis based on symptoms. It's that shady! But these things are good to note, to tell your doctor about.

            And thanks for your last response - glad you already ruled that out.

            If possible, try to do things to distract yourself from too many thoughts about what might be a symptom. You have your doctor appointments - in the meantime eat well, sleep enough, and get exercise if you can. Sending positive thoughts your way.
            All the best, ~G

            Comment


              #21
              Hello all - just wanted to provide an update. I had an appointment yesterday with a Neuromuscular specialist. He did an extensive physical examination and then performed both an EMG and Nerve Conduction study. At the end he concluded that he strongly believes I do not have a neuromuscular disorder, or show any signs of muscle atrophy.

              While this is good news in the sense that is likely not a muscle degenerative disorder, it brings me back to square one. I asked about the likelihood of this being MS and he felt it was not based on the clear brain MRI but said I could see a MS specialist if I wanted to. He seemed to suggest that my symptoms are more psychological and that I should take a break from seeing specialists for a couple months.

              I have an appointment tomorrow with my Primary Care Provider to re-group and go over what I have had done, as I have not had an appointment with him in a couple of months. I am considering asking him about both having an MRI of the spinal cord, as well as a referral to a MS specialist.

              I'm looking for feedback as to whether it would make sense to request a spinal cord MRI first and then depending on the results, then have a referral to a MS specialist if something suspicious was seen. The other option is to hold off on the spinal MRI and just be referred to the MS specialist to see what their recommendations are. Of course I would need to get my PCP to agree to one of these options.

              I continue to have the same symptoms. I have the intermittent left shoulder pain, along with the muscle spasms/twitching in the calves (legs), upper arms, and left eye-brow area. I also have what feels like tears behind the outside corner of my eyes (only 1 eye at a time does it occur though).

              Anyways, what are your thoughts? Perhaps I should be looking at seeing a Rheumotologist or Immunologist? Thanks in advance.

              Comment


                #22
                Kevin,

                If you see an MS specialist, they will look at all the tests done to date. They may only order a spinal MRI if you show clinical abnormalities. It is possible they would order even with normal exam, but be prepared they may not. If you do get a spinal MRI from your PCP and it is clear, it may be difficult to get an appointment with an MS specialist. They often ask who is referring you, what tests you have and results - at least that was my experience.

                Are you dismissing that the variety of symptoms may have a psychological and or anxiety component to them? Personally, if I was told that I didn't have MS and my symptoms were psychological, as frustrating as it is, I would be celebrating. Yes, there are stories of people having been told that, only to find out years later it is MS. But I think this is getting rarer as MRI technology gets better and MS knowledge has improved. While not every lesion will show on an MRI, and some may even disappear, there is usually a clinical abnormality. Some docs may do a spinal tap in that scenario.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #23
                  Hi kdrymer.

                  He seemed to suggest that my symptoms are more psychological and that I should take a break from seeing specialists for a couple months.
                  I am curious why you would discount the possibility that has been suggested to you by a Physician. At this point there have been no physical findings or testing by a Neurologist or Neuro-Muscular Dr. that your symptoms are in within their specialty.

                  It is very possible for stress and anxiety to cause physical symptoms which can be similar to MS and other conditions. Most commonly this is referred to as Conversion Disorder(CD) or Functional Neurological Disorder(FND).

                  Information about CD/FND:

                  https://my.clevelandclinic.org/healt...rder-in-adults

                  https://fndhope.org/fnd-guide/symptoms/

                  At the very least seeing a Psychiatrist and Psychotherapist for medication and therapy may provide you with some relief of symptoms. It's worth a try
                  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


                    #24
                    Originally posted by kdrymer View Post
                    I have an appointment tomorrow with my Primary Care Provider to re-group and go over what I have had done, as I have not had an appointment with him in a couple of months. I am considering asking him about both having an MRI of the spinal cord, as well as a referral to a MS specialist.
                    Hi kdrymer ~

                    It would be wise to write down your questions and concerns, along with the symptoms that you are still experiencing.

                    Take that with you to your PCP appointment, so your doctor clearly understands where you're at with what is going on.

                    Hopefully doc will answer your questions, and explain his decisions, whatever they may be.

                    Good luck and let us know what he says.

                    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


                      #25
                      Originally posted by kdrymer View Post
                      While this is good news in the sense that is likely not a muscle degenerative disorder, it brings me back to square one. I asked about the likelihood of this being MS and he felt it was not based on the clear brain MRI but said I could see a MS specialist if I wanted to. He seemed to suggest that my symptoms are more psychological and that I should take a break from seeing specialists for a couple months.
                      Not a muscle degenerative disorder - you received some great news, there.

                      I don’t know why some neurologists think and say symptoms are psychological, but many people with MS have heard that during their course to diagnosis.

                      Personally, I wish I’d gone to a psychologist or psychotherapist at the first mention of possibly having MS 20 years ago. I might have been far more self-assured and proactive in seeking treatment.

                      While they don’t have definitive evidence of MS in your case, psychological counseling could be a win-win situation. It will either enable you to step back from pursuing a medical diagnosis if none is in order, or it will help you to maintain the clarity and support you need in finding out what is going on with these changes you are experiencing.
                      All the best, ~G

                      Comment


                        #26
                        Originally posted by gargantua View Post
                        While they don’t have definitive evidence of MS in your case, psychological counseling could be a win-win situation. It will either enable you to step back from pursuing a medical diagnosis if none is in order, or it will help you to maintain the clarity and support you need in finding out what is going on with these changes you are experiencing.
                        I really like this response and reasoning!

                        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


                          #27
                          Hello Kdrymer,

                          Unfortunately, too many doctors suggest psychological counseling whenever they don't have the time or ability to diagnose a medical problem.

                          The frustration you are having in achieving a diagnosis is common; not only in MS but especially in MS. Many, if not most, of people on this site prior to diagnosis will have had a similar experience as you... multiple tests showing nothing conclusive followed by the suggestion that it is all in your head.

                          We all hope everything resolves successfully and whatever is causing your symptoms goes away. Relapsing-remitting MS (RRMS) follows that pattern. Progressive MS doesn't remit. Rates of progression in all cases of MS varies individually.

                          There are further diagnostics involving spinal fluid which can be done if warranted looking for OCB bands and/or neurofilament proteins. I'll provide a link...

                          https://www.ncbi.nlm.nih.gov/pubmed/29542376

                          Only an MS specialist would know much about what you were talking about if you brought up these types of tests, OCB or neurofilament.

                          Apparently, you have an undiagnosed neurological problem. Please realize it is not uncommon that it takes time and interested, capable doctors to arrive at a correct diagnosis.

                          Also, please realize many, many, many here were treated just like you before diagnosis... the nonsense that's it's all in your head.

                          Kevin, keep investigating, I'm sure you will. Early treatment in any health issue is usually best whatever it may be.

                          Hang in there! You have my best thoughts for success!

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