Announcement

Collapse
No announcement yet.

Does anyone here have PML?

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

    Does anyone here have PML?

    I've been on tysabri for 6 years (75 infusions), JC positive, titer of 1.3.
    At my neurologist appointment last week, she was looking at my MRI, and saw something that may be PML. She couldn't compare it to my last MRI as she was unable to open the scan on the disc. She said she may be overly cautious. My last MRIs are sent off to a neuro-radiologist now, and I've been waiting for a week now!
    My only symptoms are an increase in my old ones: left sided weakness, more numbess. Everything cognitively is fine. Obviously, I'm freaking out! Anyone go through this?
    Stacey

    #2
    Of course you are freaking out.

    A week is way too long to wait. Call the Neuro and ask what is going on. PML is a medical emergency. It is exceptionally serious. My bet is that it is not PML and someone dropped the ball by not calling you.

    But you still have to find out ASAP so that treatment can be started if it is. No response from your Neuro warrants an ER Visit.

    If it were me, my head would not hit the pillow tonight unless I had an answer.

    Good Luck and I am relatively certain it will all be good news. And please keep us updated so that we don't hang on something as serious as this.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

    Comment


      #3
      That's unbelievable that they would put you through that stress without getting to the bottom of it ASAP. I hope you get it clarified soon and that the news is good.

      Comment


        #4
        PML is a medical emergency. When it was suspected that I developed PML, I was given emergency MRIs, emergency evaluation by my MS doc., etc. In my case it was not PML, but the protocol when it is suspected is emergency evaluations to confirm/rule out PML, and immediate steroid treatment if PML is dx'ed.

        Comment


          #5
          Yes, as the others have said, PML is a medical emergency, not a "go home and we'll call you in a week" type thing. INADB (I'm not a doctor but..) if they thought you might have PML, they should have put you in hospital immediately.
          I would ring them and keep ringing.
          There's probably nothing wrong and they've just forgotten to notify you, which is bloody rude.
          Good luck.

          Comment


            #6
            I got the phone call yesterday. It isn't PML. I'm glad she was being cautious but the last few weeks have been stressful.
            I'm really upset with how long it took. Two weeks is too long.

            Comment


              #7
              Hi Stacer,

              I'm sorry you went thru all that worry, but glad to hear you don't have PML. It's good your neuroIogist wanted to make certain it wasn't PML, but I would certainly hope she had an answer two weeks ago.

              Originally posted by Thinkimjob View Post
              There's probably nothing wrong and they've just forgotten to notify you, which is bloody rude.
              Good luck.
              Here is the protocol that should be followed to detect PML. Note "Immediate detection is vital."

              http://www.google.com/url?sa=t&rct=j...91427555,d.eXY
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment


                #8
                please

                Stacer,

                Please make sure you let the office manager of your neurologist and your neurologist know what it was like to wait in agony during that time. Healthcare providers are human beings, and, sometimes need reminded what they have put their patients through. Not that I am giving them an excuse, but, think that they need to be held accountable.
                God Bless and have a good day, Mary

                Comment

                Working...
                X