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    #16
    Originally posted by Crazyguy View Post
    I know it sounds crazy but I think I’ve had it since I was a kid.
    Ive had a psychotic disorder since I was 18. I’ve read that early onset MS can cause seizures and normal exams as well as psychotic disorders.
    The symptoms seen in pediatric MS is very similar to those seen in adults with MS. I have had symptoms of MS since before the age of 18 and I have never had seizures or psychotic disorders.

    About Pediatric MS:
    https://my.clevelandclinic.org/healt...rosis/symptoms
    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

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      #17
      Originally posted by SNOOPY View Post
      The symptoms seen in pediatric MS is very similar to those seen in adults with MS. I have had symptoms of MS since before the age of 18

      Wow sorry you’ve had it since you were a teen. How have you held up with progression?

      I did find this link to something about seizures and brain stem symptoms in young children.

      https://www.ncbi.nlm.nih.gov/m/pubmed/16554264/

      Ive gone through stages of extreme anxiety over this and searched every which way I can. I know probably not healthy.

      Comment


        #18
        Originally posted by SNOOPY View Post
        The symptoms seen in pediatric MS is very similar to those seen in adults with MS. I have had symptoms of MS since before the age of 18 and I have never had seizures or psychotic disorders.
        I also found this.

        https://www.medscape.com/viewarticle/868859

        Moderator's Note: This URL is only for logging onto Medscape- -please try again

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          #19
          Originally posted by Crazyguy View Post
          Ive gone through stages of extreme anxiety over this and searched every which way I can. I know probably not healthy.
          Anxiety can cause a whole host of physical symptoms. Please speak to your Dr. about treating your anxiety. Researching MS can be helpful for some and harmful for others, it appears to be harmful for you. Maybe it's time to take a step back and stop obsessing over having MS...for your mental health. It's very possible you don't have MS.

          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


            #20
            Originally posted by SNOOPY View Post
            Anxiety can cause a whole host of physical symptoms. Please speak to your Dr. about treating your anxiety. Researching MS can be helpful for some and harmful for others, it appears to be harmful for you. Maybe it's time to take a step back and stop obsessing over having MS...for your mental health. It's very possible you don't have MS.

            Take care

            Thank you you for your concern. I was very anxious for quite a while, I know that was not good for me. Right now I’m in a better place and I take meds for it.

            I know it’s unlikely that I do have MS and I suppose only time will tell. I will keep you guys posted on my appointments coming up. Everyone has been respectful to me and I appreciate that.

            Comment


              #21
              Originally posted by Crazyguy View Post
              I will keep you guys posted on my appointments coming up.
              Yes, please keep us posted. We do 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


                #22
                Hi Crazyguy . Your posts remind me of my own . Don't give up searching . I see that you are located in the USA . You should be able to find a bona fide MS specialist, there. Keep on looking ! Good luck !

                Comment


                  #23
                  Originally posted by JerryD View Post
                  Hi Crazyguy . Your posts remind me of my own . Don't give up searching . I see that you are located in the USA . You should be able to find a bona fide MS specialist, there. Keep on looking ! Good luck !
                  Thanks JerryD. I’m at least not giving up till I get more tests and my doctors prove to me it’s not MS.

                  Comment


                    #24
                    Just an update. I talked with my psychologist and she thinks my doctors aren’t being thorough enough with tests. She’s recommended me to a neuro whose known for being thorough. It kinda sucks cause he’s out of network, but it seems like he’s my only chance at finding out for sure what’s going on with me. Will keep you updated on my status.

                    Comment


                      #25
                      Originally posted by Crazyguy View Post
                      Just an update. I talked with my psychologist and she thinks my doctors aren’t being thorough enough with tests. She’s recommended me to a neuro whose known for being thorough. It kinda sucks cause he’s out of network, but it seems like he’s my only chance at finding out for sure what’s going on with me. Will keep you updated on my status.
                      A good doctor is worth their weight in gold. I switched from a neurologist to an MS specialist quite a few years ago. Best choice I ever made.
                      ~ 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


                        #26
                        So I had my first appointment with my new neurologist. He’s not sure what to think but he’s ordering more blood work, another emg, Mri of lower spine, and PT specialist in balance and dizziness.

                        I haven’t got my sleep study results yet but I’m expecting them in a couple of weeks. Will post more when I know more.

                        Comment


                          #27
                          So I’ve gotten some of the bloodwork results my new neurologist ordered. My vitamin D is low, glucose is a little high, a “complement” CH50 is high, and my ANA screen were all suggestive of autoimmune disease. I’ve been tested for lupus and celiac disease and those came back normal. My new PT says my balance problems are vestibular. This is way more than my previous neurologists have been able to find. I’m feeling good that this doctor will figure out what’s on.

                          Comment


                            #28
                            Hi Crazyguy,

                            Sounds like your new Neurologist is being thorough Hoping you will soon have answers for your symptoms. Be aware there is no blood test (even the ANA) that indicates or helps with a diagnosis of MS, all blood work is used to rule in/out other conditions.

                            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


                              #29
                              Similarities but not for MS

                              Hey Crazyguy,

                              I have MS - but your restless leg and digestive problems reminds me of my food intolerances and B-12 deficiency. My deficiency is caused by a genetic inability to properly break down the typical digested form of B-12, so my bloodwork shows good levels but I’m not actually able to process it all naturally.

                              For these - I am on a restricted diet, drink lots of teas, and take methylated forms of B-12 vitamins to keep my body from twitching. I knew a couple people who also had B-12 deficiencies- one exhibited bipolar behaviors because of the exhaustion he was constantly experiencing.

                              Everyone is unique and this may not help, but I hope you get your answers soon.

                              Good luck!
                              Gatitude can transform common days into Thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings." - William Arthur Ward.

                              Comment


                                #30
                                To borrow the title of a Beetles song, the path to my diagnosis was a "Long and Winding Road."

                                I'd had symptoms for years, going back to my college days, but whatever was wrong always went away after a few weeks, so I'd dismiss the symptom and move on. When I was in my mid 40s the symptoms "aligned" all at the same time and there was no ignoring it anymore.

                                Still took another 5 years till diagnosis. This was mostly my fault because I wasn't tenacious
                                enough when a neuro, after a cursory 5 minute neuro exam, would assure me it wasn't anything
                                of a neuro mediated problem, I'd say "Okay" until the symptoms would hit hard again, and then I'd try the same neuro or another one.

                                Many of us, middle aged or older women know the drill (I guess it happens to middle aged men also ) The culprit was stress, hormonal i.e. menopause,etc.) One doctor gave me a bottle of low dose valium and told me to "relax and stop obsessing about my symptoms"...and
                                the valium did help my symptoms like spasm in my face, in my tongue, slurred speech, dexterity in one hand, etc. reinforcing the doctor's diagnosis, and I hoped too we'd found an answer.

                                Finally, after about the 5th year into this process someone told me about a new neuro in town who had come from University of Alabama at Birmingham. U of AL, at the time, had a leading MS neuroresearcher, Dr. John Whittaker, who had mentored her. She did my neuro exam (her neuro exam lasted for 3/4 hour...went over my films with me and said I had a textbook case of MS for someone my age (I guess all the other neuros hadn't read the same textbook.)

                                MRIs in recent years have really taken to the forefront of diagnosis, and this is a shame in my book. If folks were having MRIs on 3.0 Teslas, or I hear now there's a 7.0 T, it might be another story. I'm still getting my MRIs on a 1.5 T and it's at a trauma hospital in a "big city." Turns out if the other neuros had looked in the area of the brain from which all my symptoms seemed to stem , they might have seen the faint shadow which was a 9 mm lesion in my medulla affecting my autonomic nervous system, and many symptoms originating in my cranial nerves. But it was hard to visualize unless you knew what you were looking for (not hard to see now because they know where to look.)

                                If I've seen the staff neurologist when I've been admitted to the hospital for pneumonia or similar problems, they might take a quick look at my MRI and announce to me that I don't have MS. I always, nonchalantly, thank them for that news, and then they check my reflexes and announce I have no reflexes...and I then enlighten them about my Baclofen pump (this one
                                sort of ticks me off because it's always at the top of my medication list which they would have seen if they'd done a quick look over of my chart before walking in my room.) Last pneumonia hospitalization my 31 year old son was "babysitting" me one afternoon when the hospital neurologist came by...it was the first time I had seen this near. After my 20 minute "verbal grilling" from the neurologist and the doc had left the room, my son asked if that was a normal conversation with a doctor who wasn't one of my regulars. Unfortunately I had to tell him that a lot of the times it is how it goes. He said if anyone in the
                                company he worked for ever spoke in that tone to another employee, or one of their customers, they'd be let go on the spot for the attitude. Fortunately I think this "attitude" is beginning to change because I have 3 doctors (pulmonologist, pain management, and physiatrist), all about my son's age, and they are so kind, compassionate, and
                                respectful, I think the tide may be turning on the arrogant attitude front.

                                One of the best MS blogs has an interesting article and his diagnosis sort of fits mine, and ends with the same conclusion...large lesion in the brainstem. His article tells all the travels he made to try to find a diagnosis. He's a wonderful writer, he has PPMS, so he has progressed very rapidly.
                                I'll put the link to his article in my profile.

                                My advice would be if you think your symptoms are progressing, see a neuro, if it's not MS and he/she can give you an adequate explanation/diagnosis, or some relief for your symptoms, that's great. If everything is status quo, there's not much you can do except take a wait and see mode, and if things flare up again, go for another eval. With the MRI evidence now being the gold standard, not sure what I'd do. If I'm not mistaken, MS is still a clinical diagnosis (this may have changed) and an MRI is not needed for diagnosis, but that also might have changed in the 23 years since I first sought a diagnosis.

                                I'll pray that you get a diagnosis one way or another, but something you can rely on and hopefully some relief from the symptoms. Sorry I've rambled on, and one more word of advice, even though you have no diagnosis, this should not keep you from getting symptom relief medication. Ask the neuro if you some.

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