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    Spots on brain not MS ?

    Back around 1998 they found spots on my brain when doing an MRI after I came down with Histoplasmosis infection (high fever from fungus in lungs). I went to multiple doctors who have said its not in the right area (spots) for MS, I do have fatigue and some tingling in hands, feet on occasion but no other real symtoms. I've had MRI's in 2005, 2014 and a lumbar puncture (was clear).

    Lately I've been extra tired and I'm just worried that if I was misdiagnosed that I could be losing out on time I should be getting treatment. Anyone else have similar findings ?

    Also (and I will post this on different thread) is there any meds that really keep MS at bay without side effects that are worse than the disease ?

    #2
    I'm sorry that your symptoms are concerning enough that you would come here looking for answers.

    There are any number of conditions that can cause brain lesions besides MS. Trauma, migraines, infection, stroke, etc are all possible causes of brain tumors.

    "MS lesions" are found in the juxtacortical, perventricular and infratentorial areas of the brain, and the spinal cord. If your lesions are found outside of these areas they would not be considered indicative of MS.

    Even if lesions are found in one, or more, of these 4 areas, all other reasonable diseases and disorders need to be ruled out prior to a MS diagnosis should be considered. What I can tell you is high levels of stress, exposure to heat, etc. can mimic many of the symptoms you indicated.

    It appears you have already sought out multiple medical opinions. Do you not trust them? If not, I would encourage you to find a MS Specialist in your area for another opinion.

    Comment


      #3
      Hi lpranger467 and welcome to MSWorld.

      Many things can cause lesions on the brain and is not necessarily specific to Multiple Sclerosis. Many conditions can have similar symptoms as those seen in MS, there is no symptom exclusive to this disease.

      Information about diagnosing MS (McDonald Criteria):
      https://www.nationalmssociety.org/Sy.../Diagnosing-MS

      And, information on some of the other conditions that can mimic symptoms of MS:
      https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

      If you haven't seen your Primary Care Physician(PCP) about your current symptoms you might consider it.

      Also (and I will post this on different thread) is there any meds that really keep MS at bay without side effects that are worse than the disease ?
      Looking for information about the treatment of MS might be better done if you were to receive a diagnosis of MS. It really isn't helpful to explore the treatment of a disease that you are not diagnosed with. Your diagnosis could be something other than this disease.

      Best wishes.
      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


        #4
        I can't speak for "wrong spots", but I had MRI's intermittently for some 15-20 years before they ever showed any lesions. My symptoms have been consistent for 40 years, but it took until last fall to get a diagnosis because nothing ever showed up on the MRI's.

        Comment


          #5
          I'm sorry that you remain in limbo, without dx. Yeah, there are a lot of other illnesses that mimic MS, both because they cause lesions and because symptoms can be similar.

          I hope you find 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


            #6
            Thank you all very much for your replies. Frankly my issue is that I've heard of too many people who havent been diagnosed properly for various disorders (grandmother died of cancer at young age) when I feel like I still have some concerning symptoms I also never got a full explanation about other things that could have caused these spots so thanks for everyone who explained these in depth. I more or less am trying to calm my nerves while I wait for my appointment with the neurologist

            QUOTE=Marco;1526865]I'm sorry that your symptoms are concerning enough that you would come here looking for answers.

            There are any number of conditions that can cause brain lesions besides MS. Trauma, migraines, infection, stroke, etc are all possible causes of brain tumors.

            "MS lesions" are found in the juxtacortical, perventricular and infratentorial areas of the brain, and the spinal cord. If your lesions are found outside of these areas they would not be considered indicative of MS.

            Even if lesions are found in one, or more, of these 4 areas, all other reasonable diseases and disorders need to be ruled out prior to a MS diagnosis should be considered. What I can tell you is high levels of stress, exposure to heat, etc. can mimic many of the symptoms you indicated.

            It appears you have already sought out multiple medical opinions. Do you not trust them? If not, I would encourage you to find a MS Specialist in your area for another opinion.[/QUOTE]

            Comment


              #7
              Originally posted by lpranger467 View Post
              Thank you all very much for your replies. Frankly my issue is that I've heard of too many people who havent been diagnosed properly for various disorders (grandmother died of cancer at young age) when I feel like I still have some concerning symptoms I also never got a full explanation about other things that could have caused these spots so thanks for everyone who explained these in depth. I more or less am trying to calm my nerves while I wait for my appointment with the neurologist
              Would you believe nearly 20% of MS patients have been misdiagnosed and don't have MS? So that's significant problem in our community and one not always easily corrected.

              That's why it's critical that all reasonable efforts to rule out other causes are done before ever considering MS. Several people that I know spent years on our harsh therapies because they had been misdiagnosed.

              I would caution you about reading too much in your efforts to "calm your nerves." It's easy to overwhelm yourself with information that doesn't apply to you. Like your question about medication, seems premature until MS is even a consideration. As a general rule, our most robust medications also carry the biggest side effect risks. Hundreds of MS patients have died as a "side effect" of their medication. That's why we caution you not to put the cart before the horse.

              I would suggest that you write down the questions that you want answered and take them to your neurologist appointment.

              How soon is your appointment? Are you seeing a MS Specialist or a general neurologist?

              I wish you well...

              Comment


                #8
                I didnt realize there was an issue with overdiagnosis, I do have an appointment with a neurologist set up to review past records. I would have been ok with past findings but it seems as late that I have had a lot of fatigue, tingling issues that I didnt have a few years ago so I just want to be certain.

                As to medication questions, I want to have my ducks in a row to know if the side effects-vs slowing progression is worth it should the doc say I do now have it (MS)

                Originally posted by Marco View Post
                Would you believe nearly 20% of MS patients have been misdiagnosed and don't have MS? So that's significant problem in our community and one not always easily corrected.

                That's why it's critical that all reasonable efforts to rule out other causes are done before ever considering MS. Several people that I know spent years on our harsh therapies because they had been misdiagnosed.

                I would caution you about reading too much in your efforts to "calm your nerves." It's easy to overwhelm yourself with information that doesn't apply to you. Like your question about medication, seems premature until MS is even a consideration. As a general rule, our most robust medications also carry the biggest side effect risks. Hundreds of MS patients have died as a "side effect" of their medication. That's why we caution you not to put the cart before the horse.

                I would suggest that you write down the questions that you want answered and take them to your neurologist appointment.

                How soon is your appointment? Are you seeing a MS Specialist or a general neurologist?

                I wish you well...

                Comment


                  #9
                  Hi lpranger467.

                  Originally posted by lpranger467 View Post
                  I didnt realize there was an issue with overdiagnosis
                  It might be semantics but over diagnosis isn't quite right, although it might be . MS has a very, very, long history of being misdiagnosed. Some are diagnosed with MS for many years and then are undiagnosed. Some are diagnosed, undiagnosed, re-diagnosed, or diagnosed with something else. This has happened to some members here on MSWorld and elsewhere.

                  So many conditions can mimic MS symptoms

                  A couple of links on this topic:

                  https://multiplesclerosisnewstoday.c...atients-peril/

                  https://www.everydayhealth.com/multi...ple-sclerosis/
                  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


                    #10
                    Thank you, reading these articles now. Like I was saying if it wasnt for worsening fatigue I would dismiss my concerns, but I just cant sit back and ignore this at this point. The info has helped while waiting my appointment

                    Originally posted by SNOOPY View Post
                    Hi lpranger467.



                    It might be semantics but over diagnosis isn't quite right, although it might be . MS has a very, very, long history of being misdiagnosed. Some are diagnosed with MS for many years and then are undiagnosed. Some are diagnosed, undiagnosed, re-diagnosed, or diagnosed with something else. This has happened to some members here on MSWorld and elsewhere.

                    So many conditions can mimic MS symptoms

                    A couple of links on this topic:

                    https://multiplesclerosisnewstoday.c...atients-peril/

                    https://www.everydayhealth.com/multi...ple-sclerosis/

                    Comment


                      #11
                      Originally posted by lpranger467 View Post
                      Thank you, reading these articles now. Like I was saying if it wasnt for worsening fatigue I would dismiss my concerns, but I just cant sit back and ignore this at this point. The info has helped while waiting my appointment
                      Have you considered the fatigue, and other symptoms, could be completely unrelated to your past medical history?

                      Many people are currently experiencing increasing levels of fatigue largely due to our current national and international challenges. Stress, anxiety and depression related to covid, and covid isolation, can all dramatically increase your fatigue level. Even researching chronic illnesses like MS can increase your level of fatigue.

                      How are you sleeping? How is your diet? Are you drinking enough water? Have you started with your PCP to do routine blood work to rule out anything obvious?

                      These and many other questions need to be answered before an evaluation for MS should be considered.

                      Even if you do have MS, medication choices can wait days, weeks, or even a few months for them to happen. No one gets diagnosed and starts medication immediately - it's a process that often takes several weeks.

                      I would encourage you to spend more time trying to find fulfillment with your existing life while waiting for your appointment. With or without MS, you must make the best life possible. Do something enjoyable and try to calm your mind instead of increasing your level of concern considering "what if" scenarios.

                      Call some family or friends and catch up. Go for a walk. Read a book. Watch a movie. If you simply find your mind unable to stop thinking about MS then consider finding a good counselor to help you process your emotions.

                      That's your challenge for today, just like MS patients, try to count your blessings despite your circumstances. Life will always have questions and challenges... how well you respond to them is largely dependent upon what you choose to focus on.

                      I wish you well...

                      Comment


                        #12
                        Hello lpranger467, sorry to hear about your ongoing sx and the uncertainty regarding a dx. Sorry that you are here but glad that you found us.

                        I have no clue about the cause of the spots on your brain MRI, although the presents of brain lesions on a MRI is nearly a universal requirement for a dx of MS, in addition to meeting other clinical criteria.

                        The NIH has been studying the high rate of MS misdiagnosed patients, and based on a 2019 study of such patients, 77% were mis-dx by a non MS specialist. It was a small study of approximately 110 patients that were included in the study, referred from the top MS centers in the US.

                        Also there may be mis dx'ed MS cases that were made before MRI technology was available which may account for some of the high numbers of the mis dx'ed individuals, although MRI technology for brain imaging has been in use for approximately 40? years.

                        Comment

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