Announcement

Collapse
No announcement yet.

In purgatory while waiting for an MRI

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    In purgatory while waiting for an MRI

    Hello everyone,

    I wanted to document my story as I think it would be good for me to get it all out and be good for anyone else that is in limbo.

    My symptoms began in Feb 2018 when I started having left leg numbness and brain zaps on the left side of my head. I immediately thought I had a blood clot because taking combination birth control can cause blood clots. I went to the ER and after an x ray and ct of my spine, some labs, and a CT and MRI with and without contrast of my brain. I was diagnosed with having a pituitary tumor.

    The radiologist in his report said that the pituitary tumor does not explain the symptoms I am having because the size is only 3mm and would not cause compression of any other nerves. I decided not to get the opinion of a neurologist or an endocrinologist because by the time I got my MRI results back (end of feb, beginning of march) my symptoms were gone. I decided to change my birth control to the mini pill and maybe that would resolve my symptoms.

    Ever since then I would get occasional leg numbness and brain zaps every few months for a few days. Recently I decided to start recording my symptoms.
    14th April 2019 - 20th April 2019 : Brain zaps triggered when I turn my head to the left, pain in right ear.
    September or October (i forgot to record it) : Pain when bending head forward only happened once or twice.
    25th November 2019 - 4th of Jan 2020 : Burning upper arm, pins and and needles in fingers, spine pain, muscle twitching, pain behind eye, burning scalp, ear pain, brain zaps.

    This recent flare up of symptoms triggered me to finally go to a neurologist and endocrinologist because the symptoms were never that bad before. Neurologist listened to my symptoms, ordered a brain MRI and an MRI of my pituitary and suggested that my symptoms might be from the pituitary tumor but it was hard for him to say because he could not look at my actual MRI just the report of it. The endocrinologist was pretty adamant that my symptoms in no way would be caused by a 3mm pituitary tumor and did some tests and found out that it is an active prolactinoma.

    Symptoms of a prolactinoma are no menses, low sex drive, breast discharge, and infertility. I have none of those symptoms so he suggested that I could either take medicine to get rid of the tumor all together or just wait and do a retest of my prolactin in 6 months. I chose to wait.

    It was nice to get the reassurance from him that I knew in feb of 2018 that my symptoms were not connected to my 3mm tumor but who knows it might have grown since almost 2 years ago. My MRI is on the 23rd of Jan but in the mean time i am dealing with residual symptoms. like the sympoms arent as bad as they were during the late november early jan time frame but i am still dealing with scalp pain and itchiness, burning legs and arms, and throbbing behind my eyes. Are there any home remedies to help soothe me while I wait?

    #2
    Hello fullonmonet and welcome

    Sorry to learn that you have been dealing with various neurological symptoms, and that your MRI revealed a prolactinoma.

    I did a brief google of prolactinoma, and it seems to be the same as a pituitary tumor - is that correct?

    Also, if I'm understanding correctly, your symptoms are likely not due to this prolactinoma?

    Originally posted by fullonmonet View Post
    My MRI is on the 23rd of Jan but in the mean time i am dealing with residual symptoms. like the sympoms arent as bad as they were during the late november early jan time frame but i am still dealing with scalp pain and itchiness, burning legs and arms, and throbbing behind my eyes. Are there any home remedies to help soothe me while I wait?
    I don't know of any home remedies for your symptoms. Hopefully other members will have some good suggestions.

    I wonder if your doctor would prescribe something like Neurontin?

    In any case, good luck with your MRI, and let us know what you find out. 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


      #3
      To Koko:

      yes a pituitary tumor is the same as a prolactinoma. My doctor told me that about 20% of people have pituitary tumors but do not realize it because for the most part they do not cause any harm. But sometimes the tumor can make the pituitary gland release more hormones than the body needs. Pituitary gland releases prolactin, ACTH, LH, and FSH. With all the blood tests done it showed that the tumor was increasing my prolactin levels slightly above normal. High prolactin causes no menses, infertility, breast discharge, and low sex drive.

      I did not have any of those symptoms so I decided not to pursue treatment for it. If my pituitary tumor was larger than 10mm then maybe it could cause the headaches I feel and eye sight problems but since it measured at 3mm two years ago, it seems unlikely to be the reason for my growing number of symptoms. I will definitely update the thread when I get the results of my MRI

      Comment


        #4
        Originally posted by fullonmonet View Post
        To Koko:

        yes a pituitary tumor is the same as a prolactinoma. My doctor told me that about 20% of people have pituitary tumors but do not realize it because for the most part they do not cause any harm. But sometimes the tumor can make the pituitary gland release more hormones than the body needs. Pituitary gland releases prolactin, ACTH, LH, and FSH. With all the blood tests done it showed that the tumor was increasing my prolactin levels slightly above normal. High prolactin causes no menses, infertility, breast discharge, and low sex drive.

        I did not have any of those symptoms so I decided not to pursue treatment for it. If my pituitary tumor was larger than 10mm then maybe it could cause the headaches I feel and eye sight problems but since it measured at 3mm two years ago, it seems unlikely to be the reason for my growing number of symptoms. I will definitely update the thread when I get the results of my MRI
        Thanks for clarifying.

        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


          #5
          Sorry to hear about your symptoms. I have numbness and burning, but I am not to point I will consider another med because of side effects. So for now, I just live with it and try not to focus on it.

          Do any of your symptoms get worse with stress, fatigue, heat or other activity? I have a baseline, but these other factors can cause it to increase.

          Did your neuro say he wouldn't read the new MRI or was he referencing that he only had the report for old MRI? Most places give you copies of the MRI on disk. If your neuro won't read the MRIs, I would consider another. Radiologist reports can be so variable.

          Hope you get answers following your next MRI.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi Pennstater,

            When I did the first MRI it was in El Paso Tx on Feb 2018. Since then I have moved to Northern Virginia. The neurologist I am seeing now can not see my old MRI only the report from the radiologist. I never thought to get a copy of my MRI on the disc because I was under the impression that Tricare (the insurance I use) is all connected and can see the MRIs from different military hospitals. That is the main reason for the new MRI that I am going to be doing on Jan 23rd.

            As for my symptoms, I don't notice them when I am doing activities like cleaning the house or walking my dog. But I notice them more when I am trying to relax by sitting down or when I am trying to sleep.

            Comment


              #7
              Fullonmomet

              Yesterday was the 23rd. Did you have your MRI?
              ~ 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


                #8
                Hi Mamabug,

                yes I did have my MRI yesterday. I am still waiting on results to be posted online and I have an appointment with my neurologist on the 30th.

                Comment


                  #9
                  Originally posted by fullonmonet View Post
                  Hi Mamabug,

                  yes I did have my MRI yesterday. I am still waiting on results to be posted online and I have an appointment with my neurologist on the 30th.
                  Great! I wouldn't know how to read my own results, but your neuro will hopefully do a good job of explaining in the 30th.
                  ~ 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


                    #10
                    If anyone was curious about my results here they are:

                    Unremarkable craniofacial structures. There is small right maxillary mucous retention cyst or polyp. Normal orbits, skull base and craniocervical junction. Normal intracranial anatomy. No evidence of extra-axial fluid collection, mass lesion, hydrocephalus or brain herniation. Multiple irregular foci of subcortical and deep white matter signal changes scattered throughout both cerebral hemispheres. No acute ischemia or hemorrhage.

                    Dedicated images of the pituitary fossa demonstrate slightly enlarged pituitary gland with well defined internal focus of CSF signal intensity located within the left parasagittal posterior adenohypophysis. The lesion measures approximately 4 mm long axis. No evidence of adjacent cavernous sinus invasion. Patent intracavernous internal carotid arteries. -

                    IMPRESSION: Cystic lesion within posterior aspect of the adenohypophysis may represent cystic microadenoma or unusual location of Rathke's cleft cyst. Recommend correlation with clinical and lab data as well as 6-12 months follow-up. Multiple scattered subcortical and deep white matter signal changes with differential including but not limited to complicated migraines, sequela of prior trauma, infection, vasculitis or Lyme disease.

                    Comment


                      #11
                      Thank you for sharing your results, fullonmonet.

                      Originally posted by fullonmonet View Post
                      IMPRESSION: Multiple scattered subcortical and deep white matter signal changes with differential including but not limited to complicated migraines, sequela of prior trauma, infection, vasculitis or Lyme disease.
                      I don't know how to interpret these very well, but this info is new since your previous MRI, is that right? (previous was related to pituitary issues?)
                      PPMS for 22 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        hi Koko,

                        In my previous MRI report (which as a refresher was almost 2 years ago, at a different hospital, and i do not have the actual MRI on a disc) it mentions "a few subcentimeter foci of signal abnormality randomly distributed in the supratentorial white matter, which is a non specific finding" and it found my 3mm pituitary tumor.

                        So the differences between the two reports seems to be the number of white matter signals (which i don't know what that means so if anyone has any idea could you let me know), my tumor is now 4mm, and i have a maxillary cyst.


                        Comment


                          #13
                          Originally posted by fullonmonet View Post
                          So the differences between the two reports seems to be the number of white matter signals (which i don't know what that means so if anyone has any idea could you let me know)
                          White matter signal changes, on an MRI image of the brain, would mean that there are either darker or lighter areas, as detected by MRI, on the white matter of the brain.

                          In other words, these areas look different than the normal white matter areas of the brain.
                          PPMS for 22 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #14
                            Yeah; I also don't know how to interpret your results. Did your doctor explain them to you in a way that makes them understandable? Are you feeling as if you are any closer to a diagnosis?
                            ~ 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


                              #15
                              Hello everyone,

                              I unfortunately had a lackluster trip to the neurologist that has left me discouraged. Vitals are taken whenever someone arrives to Neurology for their appointment and so mine were taken. My heartbeat was 140 and my blood pressure was about 150/100. I was not concerned in the slightest because they are always high when I go to the doctor. (I suffer from social anxiety and anxiety when I drive). I had EKGs done in the past because of it and my heart is normal and my heartbeat and blood pressure are normal when I am at rest and not in an environment that I perceive as stressful. But today, the techs and nurses were very alarmed.
                              The neurologist came in and instead of discussing my scans and/or showing me my MRI he kept talking about my heart and if I had chest pains or shortness of breath. I said no and then he asked about my symptoms. I told him about the burning and itching scalp, arms, and legs and how it feels like i have a hot band around my arm sometimes. I also tell him about how my vision has seemed to be getting blurry. He asked if I had migraines I said no and he then said "well I really think it is the high prolactin you have and/or your pituitary tumor." I told him "the endocrinologist said my prolactin is only slightly elevated and said both the tumor and prolactin has no effect on my symptoms." He still wasn't convinced and then proceeds to use GOOGLE to search some symptoms up. I was shocked but not that shocked since this is a military hospital. I asked about a spine MRI and finally brought up MS. He said not likely that I had MS on my spine because I do not have trouble walking and do not have trouble using the bathroom. I almost brought up the irregular white matter signals that the radiologist mentioned but didn't because I felt like it was useless. To appease me he has ordered an EMG, has done more bloodwork (lyme, rheumatoid factor, and some vitamin deficiencies), and prescribed me Gabapentin. I left feeling very sad and cried in the car. My husband said I was valid in feeling how I did because he was also getting angry because he could tell the neurologist was trying to get me out of the door and seemed stressed. (the visit lasted about 10 min with half of those min waiting while he went to check labs).

                              So to recap: I did not get to see my MRI nor did he explain what any of my results meant besides saying "yup you have a pituitary tumor" something that we all knew, he did not mention the multiple irregular foci of white matter signals, He has ordered an EMG and bloodwork, and prescribed me Gabapentin.

                              So my questions are: is it normal to not be shown your MRI? I have already submitted paperwork to get a disc of my MRI because at this point I am unsure I want to be seen by him again. What does the EMG actually test for? and how is being on Gabapentin? I am worried about possible side effects.

                              Comment

                              Working...
                              X