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    Grown son with possible MS

    Good evening. I am at my wit's end. My son has had 5 episodes of migrating paresthesias/fatigue/brain fog in 9 months, and several relatives with MS or ADEM.

    He saw the first neuro in Dec. 2012. She was competent but very detached, to put it mildly, and failed to establish any rapport with my son. The tests she ordered showed nothing except low Vitamin D. He then saw a family practitioner who dismissed him as a psych case. Second neuro referred him to a big teaching hospital that is 5 hours away. That appt. is several months from now and only the office visit (with a resident) is scheduled. Not one doctor has taken a full history. Is there something wrong with this picture?

    My son is again in the middle of an episode. I would think the neuro would at least help him with his symptoms but the appt. lasted all of 10 minutes.

    I am a nurse and am trying to help my son. He is not, in my opinion receiving "care." But I have no idea what to expect. Do we go find another neuro? Do we fly out to Mayo Clinic?

    I know this post sounds very desperate. A year ago I had a spirited elderly mother and healthy sons, and this year I have a sick son and no mother. So yes after talking to my son today, his speech so slurred I had trouble understanding him, I feel a bit desperate. And would love people's thoughts.

    #2
    Is it possible to take him, to see, an M.D. that treats one of the 'relatives' with MS? That might be a good avenue to pursue. Has he had MRI's and a Lumbar puncture?

    If he is having issues, 'speaking', you might consider taking him to an ER. To "assume", it is MS and not do anything, might be an oversight.

    The ER Doc can rule out-other possibilities, "document" his current symptoms.
    And, 'steer' his primary and other docs, in the correct direction. Plus, order some other 'tests.' If not, he can diagnose and admit your son for treatment or further 'evaluation.'

    Most of all, my goes out to you. Losing your Mom and now having difficulty with your son's health. On the heals of your loss. You are an angel, to seek out some help and move toward getting some resolution, of your son's health issues.

    Lately, with the new "health care system" it is harder to get appointments to see M.D.'s, while still having symptoms. The ER will be utilized, to help in these matters, imo.

    for being so concerned and not letting this medical issue, remain ignored. fed

    Comment


      #3
      I'm sorry to hear about your son's troubles.

      There are a lot of things going on and different trade offs to make. Your son can go to the Mayo Clinic but first they have to agree to accept him as a patient and an appointment there will still be several weeks to months away - at least that's how it was when I wanted to go there.

      Sometimes if a person can't get a doctor to take action on their symptoms it can pay to go to the emergency room. Sometimes that leads to a good neurological workup and sometimes it only means that the worst case stuff - like a stroke or brain tumor - gets ruled out. Other than that your son's symptoms aren't an emergency so the ER might just rule out the emergency possibilities and refer him back to a neuro for more tests.

      If your son is slurring I think the ER will probably think stroke and do a CAT scan but might not do an MRI because it isn't needed to look for a stroke. So it might be worthwhile for him to go there or it might not. I've read about people who got a full workup and and diagnosis from the ER and I've also read about people who got the most serious possibilities ruled out and sent home without a diagnosis of anything.

      If the first neuro was competent and did the right tests then it may not matter if she was "detached" and your son didn't feel any rapport. The important thing is to get the right tests done and interpreted the right way. What we don't know is what tests he had. Did he have an MRI at least of the brain to explain the brain fog? Did he have spinal MRI's to look for a cause of the paraesthesias?

      Your asking about MS but the diagnostic criteria require that the person's MRI show lesions that are typical of MS. With a normal MRI a competent neuro can't make a diagnosis of MS without other supporting information. A diagnosis of MS needs evidence of at least two events that are consistent with demyelination and your son's symptoms of migrating paresthesias/fatigue/brain fog don't point specifically to demyelination. They're very general symptoms that can come from pretty much anything. I think the problem with that is that it opens the door to having to test for anything and everything and that just isn't practical or productive. The first group of tests has to tell what the second or third group of tests should be and then you go from there.

      It would be nice if his doctors would try to treat his symptoms but a lot of doctors won't treat symptoms if they don't know what the underlying cause is first. And unfortunately, once some doctors make a referral they think they're done with the patient.

      Besides vitamin D we don't know what other tests he had. But if the tests were negative then there isn't much the neuro can do about making a diagnosis. The second neuro can't do much with negative test results either. So with normal test results it sounds like maybe your son should be going to the big teaching hospital anyway for a deeper evaluation. If he wants still another opinion he can always try to get in with another neuro while he's waiting for that appointment. And it might be helpful if he can get put on a cancellation list for the teaching hospital appointment and maybe get in sooner.

      It's important for your son to fix the low vitamin D because some of his symptoms might be coming from that. To get his blood level up he should take enough of a vitamin D3 supplement to get his blood level up to at least 50 ng/ml. And this is the important part: The point isn't just how much he takes. The point is how much he has to take to keep his blood level up. The amount is different for everybody. But if his level is so low that his doctor told him about it then he'll probably be safe with taking 5000 IU a day for a few weeks and then get his blood tested again. Then he'll know if he needs to take more or can hold where he is. Normally it isn't a good idea to take advice from a stranger but vitamin D is so important for a lot of conditions - especially MS - that I'm sharing the big deal information with you right now. It's really easy to verify with a good web search.

      The two biggest impostors of MS are Lyme disease and vitamin B12 deficiency. If your son's first neuro is competent she should have tested for those.

      It sounds like the only really solid thing that's happened is your son's slurring. That at least points to something specific. If your son's neuro blew that off then he might try going to the ER. And he might try going back to his first "competent" neuro with a big new symptom. Again what matters is her competence not how warm and cuddly her personality is.

      If you have any more questions or can tell us more about what kinds of tests your son has had and what the results were please post again.

      I'm sorry your son is having so much trouble. And I'm so sorry about the loss of your mother.

      Comment


        #4
        Write down everything that is going on with him in these "exacerbations". If he is just having parasthesias then just let it play out. If he starts having any weakness, call your last neurologist. Otherwise you can wait for the appointment at the hospital.

        The resident that you see at first will do a thorough neurological exam, and if there are any deficits he/she will get the attending to come in and do the exam again. This will happen at the end most likely anyway. The resident is just there to get the H&P and save some time for the attending, you know how that goes.

        With your family history, they will most likely get an MRI.

        Just make sure you have a list of exacerbations. They must last >24 hours. List what symptoms he had, how long they lasted. What if anything made them better.

        Good luck and let us know how it goes.

        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Thanks everyone for your great and thoughtful replies. I sometimes feel as if we're navigating a maze with lead shoes on. Just to have someone to "talk" to is incredible.

          My son had full testing. The 2nd neuro has now ordered a new round of tests -- MRI, blood work, and evoked potentials. He tested negative for lyme and B12 but D was 17 and he's been good about taking something like 5,000 a day of Vitamin D. He was hoping that getting the D level up would mean less symptomology but the last few days has proven him wrong. Biggest thing is sleep disruption, and his slurring is probably that deep deep fatigue.

          He is resigned to this state which I think you guys have labeled "limbo," that it may take months or longer before something confirms the clinical picture. His MS relatives are in Holland and others in North Carolina. We live in Maine.

          Unfortunately my son does not have a PCP. He had one in Boston but then moved back a year ago, and didn't need anything until the paresthesias last Fall and was seen at the health center where he's in a master program. He still has no PCP. When he's in episode, he is receptive to ideas. But then when he's better he's back to being more or less immortal and gets caught up in his busy life. Right now he is laid very low and is receptive but cannot think well enough to have a real conversation about directions to take.

          Plus he apparently did the stoic thing at the neuro appt. this week so the neuro had no idea that sleep was such a huge issue. What kinds of OTC or Rx drugs help people with MS to sleep?

          So I'm thinking one direction is try to get him a PCP right now so he can neuro shop. The neuro he has is a one-guy practice and little experience with MS. Another is to have him see the neuro I see for cluster headaches, who is super but near retirement. At least I would know he'd get a thorough workup and the kind of guidance and support he needs.

          I'll also try to get my son to an MS meeting. It's funny, because he seems resigned to this problem and accepting of the difficulty of diagnosis, yet at the same time having some magical thoughts that it's going to go away with the Vitamin D, or that he can tough through the fatigue, that is until he is completely wiped out, as he is today. He was going to come for a visit but called to say he wasn't safe to drive.

          I also wonder about the fact that no one has done a spinal tap?

          All in all, it's a tricky journey.

          Comment


            #6
            What did his MRI say? If it did not say anything about demyelination or consistent with MS, you may be looking for something else. His Vitamin D is pretty low, if he can get it back to around 50 then he may actually feel better.

            Since you do not know that this is MS yet, you may not want to push him into a group of MSers. It probably is not appropriate for either him or them at this point. There is however a limbo area on this board he could hang out in and ask others questions, or read about how others feel in his same area. Did the physician mention MS?

            Try not to get ahead of yourself unless there was actually something on the MRI or the evoked potentials.

            Best of luck
            Lisa
            Moderation Team
            Disabled RN with MS for 14 years
            SPMS EDSS 7.5 Wheelchair (but a racing one)
            Tysabri

            Comment


              #7
              I think that there are a lot other tests and diagnostics that need to be done, before the LP. An LP is not always 'definitive'. Your son needs to see a neurologist for these problems. If the neurologist does all of the tests, and there is still no firm diagnosis, it's time to go to a university hospital for a consult. Good luck

              Comment


                #8
                Thank you.

                Yes, the university hospital appt. is in late August.

                A new set of tests has been ordered. Yeah, the neuro said it looks like MS and that MS can take a long time to diagnoses. We'll see what the new tests show up. We're not expecting anything. I guess we're resigned to this limbo state.

                The biggest issue now is sleep. He's resorting to taking benadryl for a short time in order to get enough sleep.

                Comment


                  #9
                  Benadryl is helpful, for sleep. Sometimes, it cause's headaches.

                  I drink Chamomile tea before bedtime and have a routine, if I am feeling like it. Generally, I use medical marijuana, which is approved in Mass (where he is from).

                  It is nice to use something, non-addictive. It helps with communicating and some of the 'cog-fog,' as well.

                  Did he ask his doc, about the sleep issues? I discovered, I have~serious Restless Leg Syndrome (& other issues). My Doc, put me on Sinemet (and other symptoms), a few weeks ago; It works.

                  And, another sleep study, has been ordered.

                  My goes out to you and your son. Glad you found this place. fed

                  Comment

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