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Limbo vent, long, sorry

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    #16
    Originally posted by Carolinemf View Post
    Hi Kailur,
    I didn't read all posts just the first couple.
    But i just wanted to reply about your worry of having more children etc.

    Did you know that statistics show that presentations/flares often occur just after giving birth?
    Mine did. How old is your child?
    I also went on to have five children and again if we look at stats - women with ms that have more than 3 children appear to plateau and not progress as fast as those who don't.

    I'm not advocating doing what i did (absolutely not! I think i was suffering temporary insanity!) but i was just hoping to alleviate some of your worry at this time. Docs still don't have any clue why these stats occur but they do.
    So just take one day at a time and deal with what you have to on that day and if you get through this period of intense flares and settle down then think about the future course.
    Hope you are feeling better,
    Caroline
    I actually do recall reading that at some point, and it is great to hear from someone with MS who has several children! I have had strange symptoms on and off throughout the years, but I suspect being pregnant and giving birth somehow "messed with" my immune system and kicked whatever this is into full gear. It was when my daughter was around a year old that it started to get out of hand and I began falling.


    Thank you to the previous posters who reminded me of the hospital rankings, turns out New York Presbyterian in NYC is highly ranked in both rheumatology and neurology, so if the yet to be scheduled new rheumatologist doesn't have much to offer, I will consider them as I live closer to NYC.

    I had my upper emg and nerve conduction study today and the neurologist said that they appear mostly normal with no indication of pinched nerves. He said that he had to do additional calculations with the results, as I am sure that is how these things go. One nerve on my left arm was slightly abnormal and he said that he doesn't know what to attribute that to.



    An interesting thing I found last night, I had taken an ancestry.com DNA test to find out genealogical information, but turns out that you can download the "raw data" of the DNA test and upload it into other third party apps and sites that will analyze the results and tell you health information about your genes.

    There were a few concerning things that showed up, including the fact that I do have some gene mutations that correlate with a higher likelihood of developing certain diseases, including MS. Clearly, I am not a geneticist, but maybe this information may be helpful to my doctors.

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      #17
      Hi again,
      I have wondered about those DNA tests out of curiosity so i found what you posted very interesting.
      Thanks,
      And again I hope your feeling better,

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        #18
        Quick update, today was supposed to be my follow-up with neurologist on my most recent round of tests, but the hospital has been a nightmare in scheduling my MRIs so I have to wait until the middle of next month to get the C-spine.

        I saw the new rheumatologist, said that it is most likely MS but he's not my neurologist, can't diagnose me. One of the anti phospholipids (hexagonal) was high, that will be retested in October to make sure that I don't have APS, but he told me most likely not as I don't match any other symptoms.

        According to the online report of my brain MRI from last week, lesions are still there, slightly larger, and there are more that they claimed weren't seen before but that was due to a difference in FLAIR sequence.

        I ended up in the ER in July because my symptoms were so bad, turns out that I had a UTI, which was making everything worse.

        I am having a very hard time walking and functioning still and now I have handicapped plates on my car, but no diagnosis.

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          #19
          Originally posted by kailur View Post
          Quick update, today was supposed to be my follow-up with neurologist on my most recent round of tests, but the hospital has been a nightmare in scheduling my MRIs so I have to wait until the middle of next month to get the C-spine.

          I saw the new rheumatologist, said that it is most likely MS but he's not my neurologist, can't diagnose me. One of the anti phospholipids (hexagonal) was high, that will be retested in October to make sure that I don't have APS, but he told me most likely not as I don't match any other symptoms.

          According to the online report of my brain MRI from last week, lesions are still there, slightly larger, and there are more that they claimed weren't seen before but that was due to a difference in FLAIR sequence.

          I ended up in the ER in July because my symptoms were so bad, turns out that I had a UTI, which was making everything worse.

          I am having a very hard time walking and functioning still and now I have handicapped plates on my car, but no diagnosis.
          Hi kailur

          Still no diagnosis - that has to be very frustrating for you, especially with the disabling symptoms that you are dealing with.

          Wishing for you the strength and patience to get through each day - and I realize that it's not easy.

          Take Care
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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            #20
            Another non-update

            Its been awhile since I have updated this thread. I was in the ER twice and briefly admitted for what turned out to be a very bad UTI that knocked me out of commission.

            My general neurologist thinks it is MS but was not comfortable diagnosing. Her referred me to the MS Center. The MS Specialist said "there's a small possibility that it is not primary progressive multiple sclerosis" but there is not enough evidence to make the diagnosis. She said that sometimes sleep apnea and migraines, which I both have, could cause the lesions.


            She sent me to the urologist, who will be checking for a neurogenic bladder. She also recommended physical therapy, which I did for a bit, but it is nearly impossible to schedule due to my own work schedule, my husband's work schedule, and the need for child care.

            I have been feeling worse, I no longer take the stairs at work to my desk, I have been using the elevator. I am very lucky to have a desk job, but sometimes even that is hard because even my arms get tired and driving can be tiring too.

            The most glaring evidence of my decline was when my husband and I went to a weekend event a couple of weeks ago. We had attended the same event at the same venue exactly a year before. Last year, I was able to walk around with my cane. This year, I could only walk for about 15 minutes at a time with my cane and I needed to rest for a couple of hours in between by finding a place to sit.


            After the urology testing is done, I will be seeing the MS Specialist in May. I think she will probably be ordering MRIs again and probably a repeat lumbar puncture.

            I haven't gone anywhere without my husband aside from work or picking my daughter up from daycare in awhile. I can't walk very far so I am afraid to be unable to walk and alone. Right after I was in the hospital, I used an in-store scooter at Wal-Mart and the battery died very fast, I had barely used it at all. Now I am afraid of that happening too. So I just stay in.

            The most heartbreaking part in all of this is my daughter, who is three. She is now used to me falling and tries to help me up. She gets upset when I can't walk and tries to kiss my legs and make me "all better" and I just want to cry about it. I had briefly been feeling better, so my husband and I were trying to conceive, but it is now obvious that it would not be responsible to have another child since it is already very difficult for me to physically care for the child we already have. I can't bring her anywhere outside of our home without assistance because I am not strong enough to keep up with her.

            I feel like I probably need to have a wheelchair or electric scooter, since I suspect that a manual wheelchair will tire my arms immediately. I will ask the MS Specialist about that when I see her in May.

            I am just beside myself, my functioning has gone downhill so fast.

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              #21
              kailur

              I'm so sorry to hear that you are still having symptoms and that they are worsening.

              And the fact that you have no diagnosis is most likely causing even more frustration and stress, which you sure don't need.

              All this, and then trying to care for your family too, (especially your little three year old), would be heartbreaking, as you say.

              Originally posted by kailur View Post
              She said that sometimes sleep apnea and migraines, which I both have, could cause the lesions.
              How are your clinical exams (reflexes, eyes, coordination and strength, balance, etc)? Do you have any neurological deficits when the neurologist does the exams?

              Neurological exam: https://multiplesclerosis.net/diagno...ological-exam/

              I wouldn't think that sleep apnea or migraines would cause neurological deficits such as those, but then I really don't know.

              In any case, I hope you can get some relief from the symptoms. Maybe if there is a cancellation at the MS center, you can get in to see the MS Specialist sooner.

              Hang in there.

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #22
                Koko,

                Thank you for your response. I do not have Lhermitte's sign, but I do recall that when I saw the sports medicine doctor she said in her note that Babinski reflex was equivocal. She also told me that I had hyper reflexes, which she stated can be a sign of MS. Aside from that, none of my doctors have explicitly stated my results.

                It's very clear that I have balance problems and tremor in my right arm and hand. I have noticed that the doctors often pay more attention to my right foot when it is hanging off of the table. I have self-diagnosed foot drop in that one which also seems pretty obvious now that I know what it is.

                I have noticed the "touch your nose" test has become harder to complete on the right side. When I am feeling very unwell, I can tell I have some nystagmus, but I don't know if it has ever presented during an exam. When I was in the ER for the UTI, I also had increased spasticity in my right side and had trouble speaking. It was a combination of stuttering and slurring, so they had me npo.

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                  #23
                  Originally posted by kailur View Post
                  After the urology testing is done, I will be seeing the MS Specialist in May. I think she will probably be ordering MRIs again and probably a repeat lumbar puncture.
                  Getting more MRI's and a lumbar puncture again seems to be the wise thing to do, especially if all of your other rule out tests have been done.

                  Something is going on with you, and from what you say, you are not improving.

                  Waiting is not easy, but you are seeing a specialist, so that's good.

                  In the meantime, take especially good care of yourself both physically and emotionally, in the best ways you can.

                  And come here to vent when you need to, if it helps.
                  PPMS for 26 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #24
                    Hi there. I am also in limbo, so I am sorry to see you are in a similar position.

                    Have they explained why your lesions don't clearly point to MS? Are they not in typical locations or not the correct shape?

                    Another poster suggested for me to get checked for Neuromyelitis Optica (Devics disease). I found out there's a blood test your primary care doctor can order called the NMO-IgG blood test. Have you done this yet?

                    There also appears to be two separate blood tests for MS that arerelatively recent that may be worth looking into:
                    1) gMSDx - has been out for several years
                    2) IQuity IsolateMS - this test was just recently released in late 2017. They claim to be 90% accurate, but do your homework on that

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                      #25
                      Originally posted by stevemills View Post
                      There also appears to be two separate blood tests for MS that arerelatively recent that may be worth looking into:
                      1) gMSDx - has been out for several years
                      2) IQuity IsolateMS - this test was just recently released in late 2017. They claim to be 90% accurate, but do your homework on that
                      Hi kailur,

                      I am sorry to hear you still have not received any answers yet. Please be careful of false information; A blood test has been talked about for quite some years, but to date there is no blood test to help diagnose this disease. This disease is still diagnosed based on the McDonald Criteria.

                      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

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