Announcement

Collapse
No announcement yet.

Ack! Not sure where to post this...

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

    Ack! Not sure where to post this...

    This question is for those MSers that have another family member with MS...
    Have you found that doctors are quicker to diagnose MS if a family member has already been diagnosed?

    WARNING: THIS IS WERE I GIVE A BIG BACK STORY TO EXPLAIN MY QUESTION.

    My 20 yo daughter had rheumatic fever twice when she was younger. In the past she has been pretty athletic - she is a theater major and a dance minor in school - rides her bike to classes in the past.

    She attends college about 4 hours away from home. Last Fall her sister called and told me that she (my 20 yo) was really tired and sleeping a lot just feeling bad and that she was going to take her to the campus health center. The campus nurse of course blew her off.

    When she came home for Christmas, she was more tired than usual and complained about her legs hurting. We went to Disney and I had to let her use my wheelchair because she was so wiped out.

    She came home in May and has struggled through this ridiculously hot summer. We went to the doctor figuring it was her heart (due to rheumatic fever she has some damage). They did the ekg and a tilt table test. Neither test was remarkable except that the cardiologist felt that she had a (small) seizure during the tilt table test.

    Her blood work came back fine except for high iron levels. I had actually thought that she might be deficient which is why the test was ordered. She is a vegetarian, so we aren't sure how that happened. I asked the doctor to re-run the test. We are waiting for the results.

    There is a general consensus that there is something neurological going on with her and she will be seeing my neurologist this week. Small town and he is the best. I spoke to his nurse this morning and could tell he was anxious to my daughter.

    Sorry to go on and on - guess I needed to spill it all out there since I am trying not to upset the rest of my family by discussing this.

    But it really boils down to the initial question, will they be more likely to presume MS in my daughter because of my history. She does have other symptoms; but, the symptoms of MS fit a wide range of diseases and disorders.

    #2
    I'm sure that family history of MS will receive attention however as an entity of her own she is entitled to a full neurological work-up. As a cardiac nurse I'm still concerned that it might be her heart. A leaky or sticky valve can cause the problems you describe as can rate/rhythm problems. Keep knocking on doors until you find answers.

    Comment


      #3
      I've found that doctors are quicker to look for MS or other auto-immune disorders, since auto-immune seems to run in families.

      No one else with MS in our families, but with my history of MS, docs are quick to look for auto-immune diseases, not just neurological problems.

      And certainly with a history of rheumatic heart disease, the possibility of cardiac disease would be evaluated. When my husband had a stroke at age 41, the doctors nearly missed the stroke because they were so busy investigating his heart due to his family history of heart disease.

      Comment


        #4
        I have 2 family members with MS and it took them 5+ years to diagnose me!!! Doctors don't take MS diagnosis lightly and I'm sure they will give her a full work up and there are always second opions if you or her isn't 100% comfortable with whatever diagnosis she comes out with.


        ~Diagnosed July 2010~ ~Rebif July 2010-June 2011~Copaxone Aug.-Oct 2011~ No more shots for me!!~ I choose quality over quanity!!!

        Comment


          #5
          I would see about the possibility of getting more cardiac tests done on her too. I also worry about the seizure she had on the tilt table. She will want to get that evaluated, too.
          Diagnosis: May, 2008
          Avonex, Copaxone, Tysabri starting 8/17/11

          Comment


            #6
            so sorry your daughter's having problems. I just wanted to mention, there is an "excess iron" disease which can manifest itself with neurological symptoms. I can't remember the name of the disease, just that it was one of the mimics mentioned when I was being diagnosed. but since your daughter has excess iron it might be worth looking into.

            Comment


              #7
              I would certainly hope they would at least head to MS as a rule out diagnosis immediately based on the familial tendency and that likely would result in a quicker diagnosis which is a good thing.

              Although there are other mimics I personally feel that a firm diagnosis of MS is pretty easy to secure if things meet the criteria. It sounds like you aren't convinced and although as others have said the Rheumatic fever throws a complication in I would think MS is the more likely culprit. Sorry.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #8
                Update

                First thank you for the responses. I really needed to get some ideas to 'bounce' around.

                We have repeated the blood test and she has still come back with high levels. The PCP will not do anything further regarding the results - she has made referrals and feels that a specialist needs to manage it.

                We have a tentative appt. with the gastro doctor for November 30. When he gets a chance he will review her file and decide if she should come in sooner.

                My mom (she's a nurse) suggested making sure those blood results get to the cardiologist. So I had those faxed over today.

                It will be good to get the neuro appt over with because I think that is the one weighing on us most heavily.


                It is difficult to say if she has 3 seperate issues - possible siezures, high iron levels, mitral and tricuspid valve leakage. Or is this all one problem. I just don't want my MS or the autoimmune disorder issue to throw the doctors off of other possibilities.

                Rheumatic fever is an autoimmune disorder. Her sisters both have severe asthma and allergies and one has scleradoma (not severe) while the other was diagnosed with Raynaud's when she was small - all auto immune disorders. You can see how that would distract a doctor from other potential diagnosis.

                Comment

                Working...
                X