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    #16
    Hello fullonmonet

    Originally posted by fullonmonet View Post
    To appease me he has ordered an EMG, has done more bloodwork (lyme, rheumatoid factor, and some vitamin deficiencies), and prescribed me Gabapentin.
    Originally posted by fullonmonet View Post
    He has ordered an EMG and bloodwork, and prescribed me Gabapentin.
    This tells me that your neuro is still in the diagnosing/testing stage, looking to rule-out or rule-in various disorders.

    Originally posted by fullonmonet View Post
    What does the EMG actually test for?
    EMG:

    Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

    Motor neurons transmit electrical signals that cause muscles to contract. An EMG uses tiny devices called electrodes to translate these signals into graphs, sounds or numerical values that are then interpreted by a specialist.

    During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle.

    A nerve conduction study, another part of an EMG, uses electrode stickers applied to the skin (surface electrodes) to measure the speed and strength of signals traveling between two or more points.

    https://www.mayoclinic.org/tests-pro...t/pac-20393913

    Originally posted by fullonmonet View Post
    he did not mention the multiple irregular foci of white matter signals
    Could you call and ask your neuro that question?

    What does an MRI show?

    The precise image produced by MRI gives the neurologist clear evidence of scar tissue in the deep parts of the brain or spinal cord that is characteristic of MS.

    However, abnormal spots on the brain MRI can be caused by other conditions, so these images must be interpreted by the neurologist in light of all information about the patient. Similar lesions can be seen in elderly people or people with migraine headaches or high blood pressure. Confirming a diagnosis of MS and ruling out other possible causes requires expert interpretation of the MRI scan.

    https://my.clevelandclinic.org/healt...s/test-details
    PPMS for 23 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #17
      Hello KoKo,

      Yeah it seems to be that he is still in the diagnosing phase but from the tone of the meeting and how he left things before mentioning the other tests it seemed like an end of the road, contact your endocrinologist type of meeting.

      I have the EMG on the 11th so I am looking forward to get more results but some people said its painful so kind of worried about that lol.

      The neurologist just called me to check on me about my heart rate and I told him that its down and then I mentioned the white matter signals. He said they can come from vasculitis and lyme disease and migraines. He said I definitely dont have vasculities and since I dont have migraines the only thing left to look at is lyme. He said the signals dont look like MS. I asked about the number and he at first said 5-6 and then he said wait im looking at your MRI now and its actually 12. He then said its common for people to have and to not to worry. I mentioned how my old MRI report said a few white matter signals and this new report says multiple and he chalked it up to just the reporting system. I don't know 12 does not seem like a few to me and this makes me wish even more that I had my MRI from El Paso.

      I think the reason I am discouraged because I was expecting a spine MRI to be next to see if there are any lesions there but I guess I will have to wait in the meantime.

      Comment


        #18
        Originally posted by fullonmonet View Post
        Hello KoKo,

        Yeah it seems to be that he is still in the diagnosing phase but from the tone of the meeting and how he left things before mentioning the other tests it seemed like an end of the road, contact your endocrinologist type of meeting.

        I have the EMG on the 11th so I am looking forward to get more results but some people said its painful so kind of worried about that lol.

        The neurologist just called me to check on me about my heart rate and I told him that its down and then I mentioned the white matter signals. He said they can come from vasculitis and lyme disease and migraines. He said I definitely dont have vasculities and since I dont have migraines the only thing left to look at is lyme. He said the signals dont look like MS. I asked about the number and he at first said 5-6 and then he said wait im looking at your MRI now and its actually 12. He then said its common for people to have and to not to worry. I mentioned how my old MRI report said a few white matter signals and this new report says multiple and he chalked it up to just the reporting system. I don't know 12 does not seem like a few to me and this makes me wish even more that I had my MRI from El Paso.

        I think the reason I am discouraged because I was expecting a spine MRI to be next to see if there are any lesions there but I guess I will have to wait in the meantime.
        I'm very glad that you talked to your neuro!

        By you asking about the white matter signals, he is well aware that you are paying attention to your tests and results. He might be more open with you now. Sometimes neuros don't realize that most patients want to know everything possible.

        I didn't need an EMG - I flunked all my neurological exam tests. Hopefully other members will share their EMG experiences.

        By the way, did your neurological exam show any deficits (coordination and strength, nerve sensation, reflexes, balance, etc)?
        PPMS for 23 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #19
          Koko,


          Yeah he seemed apologetic that he didn't show me my MRI and explain it more.

          I do not think my exam showed any deficits since afterward he said "everything is fine."

          Since it seems I do not have the characteristic falling and terrible balance that people with MS have it makes me feel less and less likely that what I am dealing with is MS. Although last night I felt like I had an MS hug. It felt like an electric shock almost rubber band snapping on both sides of my lower ribs and only last a few seconds. Has anyone else experienced that?

          Comment


            #20
            Originally posted by fullonmonet View Post
            Yeah he seemed apologetic that he didn't show me my MRI and explain it more.

            I do not think my exam showed any deficits since afterward he said "everything is fine."
            Good to know!

            Originally posted by fullonmonet View Post
            Since it seems I do not have the characteristic falling and terrible balance that people with MS have it makes me feel less and less likely that what I am dealing with is MS.
            Well, the truth is that persons with MS don't always have the same symptoms, especially early on. It all depends on where the lesion damage is located.

            Originally posted by fullonmonet View Post
            Although last night I felt like I had an MS hug. It felt like an electric shock almost rubber band snapping on both sides of my lower ribs and only last a few seconds. Has anyone else experienced that?
            I don't have that particular symptom, but others may have experienced it.

            I hope that you are documenting every symptom, and how often they happen. Take it with you to your next appointment. My neuro told me that it was very helpful to him, when I gave him my list of symptoms and their frequency, and also if they appeared at certain times (when fatigued, too warm, etc).
            PPMS for 23 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #21
              I had my Nerve Conduction study and it hurt lol. It hurt but also felt weird to see your limbs jerk without your control. The neurologist (not my main neurologist) who did the test said my nerves were not damaged. So it seems my concerns are related to the central nervous system and not the peripheral.

              My labs also came back and they were all negative or normal. I don't have lyme disease, I don't have lupus, I don't have a b12 deficiency, and I don't have arthritis.

              I need to schedule a follow up appointment with my main neurologist. It seems I am running out of possible causes and running out of tests. The only thing left I can think of is spinal tap and spine MRI. So it seems we are narrowed down to MS, pituitary tumor causing weird symptoms not characteristic of a pituitary tumor, or something else.

              Comment


                #22
                You don't have lyme disease, you don't have lupus, you don't have a b12 deficiency, and you don't have arthritis. Hopefully, ruling out all of these possibilities means that you are getting closer to an accurate dx.

                It's hard to wait. Once you have a dx, you'll be able to educate yourself about treatment and make some decisions about what you want to do.
                ~ 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


                  #23
                  Originally posted by fullonmonet View Post
                  I had my Nerve Conduction study and it hurt lol. It hurt but also felt weird to see your limbs jerk without your control. The neurologist (not my main neurologist) who did the test said my nerves were not damaged. So it seems my concerns are related to the central nervous system and not the peripheral.

                  My labs also came back and they were all negative or normal. I don't have lyme disease, I don't have lupus, I don't have a b12 deficiency, and I don't have arthritis.

                  I need to schedule a follow up appointment with my main neurologist. It seems I am running out of possible causes and running out of tests. The only thing left I can think of is spinal tap and spine MRI. So it seems we are narrowed down to MS, pituitary tumor causing weird symptoms not characteristic of a pituitary tumor, or something else.
                  Thank you for the update. Glad you made it through your EMG.

                  Looks like your rule-out tests are moving right along.

                  It will be interesting to see what your neuro's next move is.

                  The journey continues....

                  Take Care
                  PPMS for 23 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #24
                    Originally posted by fullonmonet View Post
                    I had my Nerve Conduction study and it hurt lol. It hurt but also felt weird to see your limbs jerk without your control. The neurologist (not my main neurologist) who did the test said my nerves were not damaged. So it seems my concerns are related to the central nervous system and not the peripheral.
                    I feel for you. EMG's are a strange uncomfortable feeling and... well... they just suck. I have had two now with two different neurologists, both showed "normal". After each one, the neurologists commented that the results indicated that the problem is "further up the chain" as one put it, indicating that it was a CNS problem.

                    Originally posted by fullonmonet View Post
                    My labs also came back and they were all negative or normal. I don't have lyme disease, I don't have lupus, I don't have a b12 deficiency, and I don't have arthritis.
                    Welcome to the world of "we can tell you what you don't have, not what you do have." The problem becomes if your neurologist gives up prior to finding an answer.

                    Originally posted by fullonmonet View Post
                    I need to schedule a follow up appointment with my main neurologist. It seems I am running out of possible causes and running out of tests. The only thing left I can think of is spinal tap and spine MRI. So it seems we are narrowed down to MS, pituitary tumor causing weird symptoms not characteristic of a pituitary tumor, or something else.
                    If your neurologist doesn't do an MRI of the spine and/or a lumbar puncture, push them on it. If they still refuse, it is time to look for another neurologist. That is the exact boat I am in and I am now waiting to see a different neurologist through another hospital system.

                    I wish you luck and hope that your neurologist will continue to push forward looking for an explanation instead of the "I don't know" shoulder shrug. Most of all, I wish you strength to always press forward, advocating for your health.

                    Comment


                      #25
                      At the pharmacy after my neurology appointment. Neurologist says he has done everything on his end and that the only thing left would be to do a skin biopsy. He said to continue to get gabapentin he has to put in a diagnosis for me so he put “headaches.” He even said he had a young lady have headaches and it turned out to be hormonal (even though I told him repeatedly I don’t get headaches and I get nerve pain constantly). He really thinks that my pain is from the tumor. He said to follow up with him in 3-4 months (basically follow up with him when I get my prolactin retested in May).

                      I do not think I’m going to be coming back to this hospital because I am moving in mid-March so I will most likely be with a new neurologist and endocrinologist. But since it’s in the military all the notes and labs can be shared. I feel discouraged but perhaps I do need to get my tumor taken care of so it won’t be a confounding variable or maybe he is correct and it is the tumor after all.
                      Last edited by Mamabug; 02-28-2020, 03:57 PM. Reason: Paragraph spacing

                      Comment


                        #26
                        Hello! Long time no talk!

                        Covid-19 and my move from VA to NC has caused a disruption in my quest for answers but I am now back on track. I visited my new Primary Care Manager and he ordered a new MRI and new labs for my prolactinoma. To recap I got a MRI in January that said:
                        Multiple irregular foci of subcortical and deep white matter signal changes scattered throughout both cerebral hemispheres with differential including but not limited to complicated migraines, sequela of prior trauma, infection, vasculitis, or Lyme Disease.
                        My neurologist at the time did not think MS is the cause of my symptoms even after all the blood tests came back negative. He wanted to do a skin biopsy instead of a spine MRI but I declined and then moved to a different state.

                        My new MRI report says:
                        Nonspecific foci of T2 FS and T2 FlAIR white matter hyperintensity are noted subcortical, deep and periventricular white matter. Differential considerations includes demyelinating disease (including inflammatory/multiple sclerosis, infection), toxic, hypoxia//ischemia, metabolic, nonspecfic white matter changes in patients with migraine headaches, TBI changes in the military population, hyperintensive microangiopathy, premature microangiopathy, autoimmune microangiopathy, and vasculpathy.

                        Because of number of white matter lesions, full up including evaluation by neurology is recommended.

                        I know the radiologist is just listing the possible causes of the lesions and i am not officially diagnosed in any way but the relief I saw when it said demyelinating disease felt so good. I almost thought the symptoms I felt were all in my head because since November the burning has gone away for the most part (except it will randomly come back for a few hours especially when I drink alcohol). So I guess since there was a "FLAIR" the lesions in my brain are actively inflamed? I have an appointment with a neurologist on the 25th and it will be interesting since the gossip among the other military spouses is that the neurologist is not the greatest so if his next steps are not spine MRI or Lumber puncture I am definitely going to request a new neurologist.

                        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                        Comment


                          #27
                          Hi fullonmonet.

                          Originally posted by fullonmonet View Post
                          So I guess since there was a "FLAIR" the lesions in my brain are actively inflamed?
                          FLAIR is simply a MRI sequence and does not indicate inflammation. Confusing isn't it Did you have the MRIs with and without contrast (dye)? It is the contrast that can pick-up active inflammation.

                          Hoping all goes well with your Neurology appointment
                          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


                            #28
                            Hi snoopy,

                            yes it was with and without contrast and thank you for the well wishes!

                            Comment


                              #29
                              Originally posted by fullonmonet View Post
                              Hello! Long time no talk!
                              Yes it has been awhile (since the end of February)! We're glad that you came back, fullonmonet. Hope you're doing well today.

                              So your moving is done, and the search for answers has resumed.

                              The recent MRI report looks to be a little more detailed than the earlier MRI report.

                              Looking forward to hearing what your neuro's next moves are.

                              Good luck on the 25th!

                              Take Care
                              PPMS for 23 years (dx 1998)
                              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                              Comment


                                #30
                                Originally posted by fullonmonet View Post

                                [/B]I know the radiologist is just listing the possible causes of the lesions and i am not officially diagnosed in any way but the relief I saw when it said demyelinating disease felt so good. I almost thought the symptoms I felt were all in my head because since November the burning has gone away for the most part (except it will randomly come back for a few hours especially when I drink alcohol).

                                So I guess since there was a "FLAIR" the lesions in my brain are actively inflamed? I have an appointment with a neurologist on the 25th and it will be interesting since the gossip among the other military spouses is that the neurologist is not the greatest so if his next steps are not spine MRI or Lumber puncture I am definitely going to request a new neurologist.
                                It's good to see you back. It's kind of ironic, isn't it, that we often feel relief when we see a dx or something resembling a dx. I mean, I know that we don't wish to have MS or a demyelinating disease. But, the fact is ... we do have symptoms. So, we just want to know what's causing them so we can get past being in limbo and start deciding on treatment.

                                Yes, you're right. If you had a flare, your lesions were active and there was inflammation going on. I hope this neuro will work out or that you'll find a more competent one if the rumors about him or her are true.
                                ~ 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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