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In purgatory while waiting for an MRI

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    #31
    Hello everyone,

    So some updates from last time.

    I met with the neurologist and he also doesn't think I have MS because I do not have problems walking or incontinence or eye problems. However, he has decided to do a lumbar puncture and an EEG.


    the lumbar puncture was done on September 15th and it went fine. I did get a spinal headache but I feel better now. some of the results have come in and I noticed it said I do not have bands in CSF. But the other results have not come in yet and I have not had a chance to discuss with my neurologist yet.


    I had the EEG today (Sept 21) and it was fine up until the portion of the test where they flash lights while your eyes are closed. I could feel the bottom half of my face twitching (my chin, nose, and lips). It was so strange. the tech did not mention it (i don't know if he noticed it because of the mask but I could feel the mask was twitching a lot and sliding down my nose) and suggested I come in tomorrow for a visual and auditory evoked potential test.


    so that is everything so far. I was wondering if anyone else had strange occurrences during the EEG.

    Comment


      #32
      Originally posted by fullonmonet View Post
      So some updates from last time.

      I met with the neurologist and he also doesn't think I have MS because I do not have problems walking or incontinence or eye problems. However, he has decided to do a lumbar puncture and an EEG.

      Thank you for checking-in with updates.

      Good to know that your neuro decided on the lumbar puncture and EEG. Looks like he is covering all the bases to find answers, or to rule-out various conditions.


      Originally posted by fullonmonet View Post
      the lumbar puncture was done on September 15th and it went fine. I did get a spinal headache but I feel better now. some of the results have come in and I noticed it said I do not have bands in CSF. But the other results have not come in yet and I have not had a chance to discuss with my neurologist yet.

      I had a terrible headache after my LP. Did you have to go to the ER? (I did!)

      Let us know what your neuro says about the LP results.


      Originally posted by fullonmonet View Post
      I had the EEG today (Sept 21) and it was fine up until the portion of the test where they flash lights while your eyes are closed. I could feel the bottom half of my face twitching (my chin, nose, and lips). It was so strange. the tech did not mention it (i don't know if he noticed it because of the mask but I could feel the mask was twitching a lot and sliding down my nose)

      That would feel strange to me too!


      Originally posted by fullonmonet View Post
      and suggested I come in tomorrow for a visual and auditory evoked potential test.

      Visual and auditory EVP tests will evaluate the strength of the nerve signals between your brain and optic nerve, and between the brain and the nerves involved with hearing.


      Originally posted by fullonmonet View Post
      I was wondering if anyone else had strange occurrences during the EEG.
      I didn't have an EEG test done.


      Good luck as you continue with the testing process, and keep us posted. Thanks!

      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


        #33
        Originally posted by fullonmonet View Post
        I had the EEG today (Sept 21) and it was fine up until the portion of the test where they flash lights while your eyes are closed. I could feel the bottom half of my face twitching (my chin, nose, and lips). It was so strange. the tech did not mention it (i don't know if he noticed it because of the mask but I could feel the mask was twitching a lot and sliding down my nose) and suggested I come in tomorrow for a visual and auditory evoked potential test.

        so that is everything so far. I was wondering if anyone else had strange occurrences during the EEG.
        Hi fullonmonet and thanks for the update

        I am confused about your EEG. I have had 2 EEGs quite some years apart and never had a mask on my face. Due to your description I decided to take a look to see if something has changed in how an EEG is done.

        An EEG is where you have electrodes stuck to your head with a washable glue. Sometimes they will use a cap on your head and pull the electrode through but it does not cover your face nor does the cap fall over the face. Did I misunderstand your description?

        https://www.hopkinsmedicine.org/heal...ephalogram-eeg
        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


          #34
          I forgot to mention; the Tech is not allowed to discuss your results (positive, negative or concerns), that is for the prescribing physician to do.
          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


            #35
            hi snoopy,

            the mask was just a face mask because of covid. i also had to wear my face mask for lumbar puncture lol. And yeah i figured the tech wouldn't discuss results without consulting the neurologist it just freaked me out when the twitching happened.

            Comment


              #36
              Hi Koko,

              No i didn't go to the ER because it didn't feel like "the worst headache ever" as the nurse described spinal headaches. It was just annoying because sitting and standing triggered a pressure feeling in my head. I had the evoked potential today and I had to look at a screen and focus on a red dot and he said "try to concentrate or we will have to keep repeating it" and I tried my best but had to repeat it 3-4 times for each eye. I don't know if that is normal or not. He only had to do the hearing once for each ear.


              I forgot to mention that my Vitamin D was tested and it was low so the neurologist prescribed 50,000 D3 to be taken once a week. I will pick up the prescription tomorrow.

              Comment


                #37
                Originally posted by fullonmonet View Post
                hi snoopy,

                the mask was just a face mask because of covid. i also had to wear my face mask for lumbar puncture lol. And yeah i figured the tech wouldn't discuss results without consulting the neurologist it just freaked me out when the twitching happened.
                Good grief, I did not even think about Covid and “that” kind of mask 🙄😂 Take care 🙂
                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


                  #38
                  Hello everyone,

                  I met with my neurologist yesterday (Oct 13th 2020) and he went over my lumbar puncture and EEG results.

                  My lumbar puncture was normal. No bands, myelin basic protein normal, everything else normal.

                  My EEG, visual evoked potential and audio evoked potential test were normal.

                  He says I do not have MS and he does not know the cause of my paresthesia and fatigue. Basically we are at the end of the line. He has put in some orders for blood tests for myasthenia gravis and for some blood clotting disorders but for right now he wants me to meet with my endocrinologist on the 29th and get back with him on what they say. But as he said "I have done all I can do." I asked him did he think the pituitary tumor is causing the pain and fatigue and he said in his opinion no.

                  I cried when I got home and mourned not because I do not have MS (I should be happy) but I am sad because no one knows whats wrong with me. I had nerve conduction tests showing no nerve damage. I had other blood tests showing no lupus, lyme, diabetes, vitamin deficiency, etc. The MRI showed lesions but for him he said its probably from migraines (I do not have migraines just the annoying brain zaps).

                  I am just kind of "over it" and complacent but I thought I would give you guys an update and tell you guy I appreciate the kindness you have all shown me. For right now I have to get use to my new normal and try to convince myself it is not all in my head.



                  Comment


                    #39
                    Originally posted by fullonmonet View Post
                    Hello everyone,

                    I cried when I got home and mourned not because I do not have MS (I should be happy) but I am sad because no one knows whats wrong with me. I had nerve conduction tests showing no nerve damage. I had other blood tests showing no lupus, lyme, diabetes, vitamin deficiency, etc. The MRI showed lesions but for him he said its probably from migraines (I do not have migraines just the annoying brain zaps).
                    Thanks for the update. Yeah; I get it. I was in limbo for almost two years and I was glad to find out that I had MS. The symptoms existed, no matter what I had, so I just wanted to know what it was so I could get on with my life and learn how to live with it and how to treat it. You still don't have that luxury. I hope you find more answers soon.

                    ~ 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


                      #40
                      Originally posted by fullonmonet View Post
                      He says I do not have MS and he does not know the cause of my paresthesia and fatigue. Basically we are at the end of the line. He has put in some orders for blood tests for myasthenia gravis and for some blood clotting disorders but for right now he wants me to meet with my endocrinologist on the 29th and get back with him on what they say. But as he said "I have done all I can do." I asked him did he think the pituitary tumor is causing the pain and fatigue and he said in his opinion no.

                      I cried when I got home and mourned not because I do not have MS (I should be happy) but I am sad because no one knows whats wrong with me. I had nerve conduction tests showing no nerve damage. I had other blood tests showing no lupus, lyme, diabetes, vitamin deficiency, etc. The MRI showed lesions but for him he said its probably from migraines (I do not have migraines just the annoying brain zaps).

                      I am just kind of "over it" and complacent but I thought I would give you guys an update and tell you guy I appreciate the kindness you have all shown me. For right now I have to get use to my new normal and try to convince myself it is not all in my head.
                      I'm sorry to learn that the cause of your symptoms has not yet been found.

                      I'm sure that you feel disheartened and discouraged, especially after having gone through so much testing.

                      You still have some more tests, and the appointment with your endocrinologist, and then a follow-up with your neuro.

                      Keep us posted. Continue to share what you're going through, if it is helpful to you. We are interested in your journey.

                      Also, please continue to take good care of yourself, and try to be hopeful.

                      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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