Announcement

Collapse
No announcement yet.

Update and Oh What TO DO :(

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

    Update and Oh What TO DO :(

    Hi everyone - needless to say I didn't cancel my membership yet...and don't think I'm gonna

    After being diagnosed with RRMS in 2012, and continually getting worse until present, mostly walking, my new neuro decided maybe this is PPMS, or maybe not MS at all. So she sent me back to the neuro who diagnosed me - more on that in a minute.

    My PCP, in the meantime, sent me to Rheumatology for my fibro - and the rheum decided maybe I have Lupus - so another round of tests - all negative.

    For the record, these are my symptoms that I'm pretty sure are not fibro related: I can't walk, right leg is stiff and swings or drags most of the time, left leg doesn't go right and sometimes is stiff. The longer I use my legs, the less I can use them - stiffer they get. They feel 'dead' and right foot goes numb - I can't feel the tuning fork in this foot, not real good in the left either. I can't tell which way my toe is going in right foot.
    I have bladder retention, can't feel when I need to have a bowel movement most of the time, so it just comes. Can't feel anything sexually. Legs/feet jerk if I move them at all from a semi relaxed position and won't stop for several seconds. I have fatigue that I know is fibro, and fatigue that shuts me down - can't walk/talk/think. I lost a LARGE volume of knowledge when this all started in 2012 - a LOT. The neuropsych said my memory went from above normal to low normal, but this is probably age (it happens suddenly?) I'm Romberg positive, swaying and losing my balance completely at this point - but do not have Babinski. I can't function if the temp is over 80 degrees or so - the crippling fatigue sets in quickly and i feel like i'm boiling. I get electric shocks in one side of my forehead above my eyebrow to my nose that floor me for a minute or two.

    In 2012, I was dx with 5 lesions in my brain that the neuro said were 'in the places they would be for MS' - Same neuro in 2015 says, I have one lesion - the others were 'artifacts' (btw, the 2012 was done on a much stronger MRI than the 2015) - I have a positive LP for MS - and I have progression that looks like PPMS - however, he sees a great disconnect between symptoms and medical evidence, so he thinks it could be conversion disorder.

    I'm almost 50 years old and have been having these same symptoms, increasing in pain and disability for over 15 years. I hardly fit the criteria for conversion disorder. The problem is, this neuro re-dx me with 'difficulty walking' ??? So, my insurance now will not pay for the MRIs to be read there - or anything else related to the MS dx.

    He wants me to have a somatosensory evoked potentials test. And a bunch of blood work that looks like he is looking for Stiff Person Syndrome. I don't know what to do

    #2
    I think you have spent enough time with these neuros for them to make a positive diagnosis. Maybe you need to consult an MS Specialist. If your neurologists are perplexed with your symptoms, they probably do not have MS expertise. Just a thought. Good luck.

    Comment


      #3
      Originally posted by JerryD View Post
      Maybe you need to consult an MS Specialist.
      The neuro who dx me, and who i just saw is at an MS Center- I thought was MS Specialist. It was his last day there though, and he only saw me for about 15 min.

      Comment


        #4
        did he have anything to say

        Did this neuro have any answers for you? I hope you are not still dangling in the air.
        God Bless and have a good day, Mary

        Comment


          #5
          Originally posted by kelm10 View Post
          Did this neuro have any answers for you? I hope you are not still dangling in the air.
          No - he gave me no answers at all. He explained to me what I know - I have a positive LP, an abnormal brain MRI, progressive disability, but he says my exam is negative, so he feels is conversion disorder.

          I don't know what to do. I've lived with this for over 15 years now - lost my job, my car, my driver's license, my independence. I have two grand babies now that I want nothing more than to be able to carry across the room and keep while my kids are at work

          Comment

          Working...
          X