Big Day on Weds.

    • Anonymous
      October 12, 2009 at 8:10 pm

      [SIZE=”4″]After going into a full relapse, my local neuro was telling me to decrease my steroids. I of course increased them. I got up to 50 mgs. a day. It took 2 weeks, but I finally turned the corner. I’m now down to 40. This has been 7 weeks now.
      After reading the posts here, I got in touch with Johns Hopkins in Baltimore. On Weds. morning, my Mom & I will be on an Amtrak train to get back under control. Since my NYC doctor ended up at the USF, I’ve basicly been under my own care. If my hip doctor didn’t make me go to the dentist, I’d probobly be back to work by now. But the drill got the best of me & triggered my flair up. I’ve always hated the drill.
      But because of this flair up, I’m now back to where I was over 4 years ago. I lost more than half of my muscles, stamina, always fatigued.
      We’ll see what happens. I’m told they have a group of doc’s that deal with just CIDP. I’ll keep you updated. If you don’t hear from me by Friday, it would be safe to assume I was admited.[/SIZE]

    • Anonymous
      October 13, 2009 at 10:12 am

      I hope they get it all sorted out for you….Waiting for an update….you are in thoughts and prayers in the meantime.

    • Anonymous
      October 14, 2009 at 11:12 pm

      [SIZE=”4″]Long story short, I will be admited in about 2 weeks. Test results were bad.[/SIZE]

    • Anonymous
      October 14, 2009 at 11:20 pm

      Hope they hook you up down in Baltimore. Sorry you got bad results 🙁

      You haven’t found anyone in NYC you like? I’ve been at just about every hospital here. I like Columbia-Presbyterian the best. I just started seeing Dr. J. Kirk Roberts. Seems pretty smart. It’s hard to find a good neuro who willing to listen to his patients. My last neuro (not at Columbia) also tried to take me off pred, and then when I relapsed his office would not give him my messages!

      -Marie

    • Anonymous
      October 16, 2009 at 3:47 pm

      I just read your post. If at all possible, request Dr. David Cornblath. This is one of his specialties, and he is one of the lead researchers in the world on this disease (he does travel a lot). He has been my doctor, and has been great. I was treated as an outpatient at Hopkins (in their Sidney-Kimmel Cancer Center) with IVIG. The staff there were superb in every way. I also had a lumbar puncture and two nerve conduction tests at Hopkins, and again, the staff, methodology, and everything they did were really at a fantastic level. I wish you the very best and pray for a rapid diagnosis and successful treatment.

    • Anonymous
      October 16, 2009 at 7:10 pm

      Good Luck Jersey Mike! You will be in my thoughts and prayers.
      I hope things turn around for you very soon.
      Sandila

    • Anonymous
      October 16, 2009 at 7:27 pm

      hope all goes well, u r in my thoughts and prayers

    • Anonymous
      October 16, 2009 at 7:55 pm

      hope all goes well, u r in my thoughts and prayers

    • Anonymous
      October 16, 2009 at 8:28 pm

      Good luck Mike. You deserve a break today !!

      Not McDonald’s either.

      Dick S

    • Anonymous
      October 16, 2009 at 9:09 pm

      [QUOTE=ajgeb]I just read your post. If at all possible, request Dr. David Cornblath. This is one of his specialties, and he is one of the lead researchers in the world on this disease (he does travel a lot). He has been my doctor, and has been great. I was treated as an outpatient at Hopkins (in their Sidney-Kimmel Cancer Center) with IVIG. The staff there were superb in every way. I also had a lumbar puncture and two nerve conduction tests at Hopkins, and again, the staff, methodology, and everything they did were really at a fantastic level. I wish you the very best and pray for a rapid diagnosis and successful treatment.[/QUOTE]

      [SIZE=”4″]I ended up with his boss. The head of the dept. I too am very impressed with the care & professionalism I’ve seen so far. My nerve conduction tests was bad. The tech said” if I didn’t see you walk into this room, I’d a guessed you were in a wheelchair”. Needless to say I’m getting peoples attention. I was also the worst case of CIDP Columbia Pres. ever saw.Just call me “Lucky”.;) 😀 [/SIZE]

    • Anonymous
      October 16, 2009 at 9:09 pm

      [SIZE=”4″]Thanks everyone for the kind words.[/SIZE]

    • Anonymous
      October 16, 2009 at 10:50 pm

      But, don’t ya absolutely HATE those stupid ‘wheelchair’ statments?
      Tell them you are simply too ornery to give in! THAT is how I responded to such silly statements…and all are taken aback by it.
      I grew up in No. Bergen Co. and am thinking…. maybe it’s something in the water? But no, I’ve been gone from there for 30+ years So, IT is something else.
      Best thing is: you ARE GETTING HELP. That is the most important thing for now. It’s amazing what the right diagnostic tests can do for a person.
      I’ll be crossing my fingers and my eyes for the duration. So this has to be quick? I’ll need both sets for other things, you know?
      Promise us all tho? That you won’t get too discouraged at it all?
      Get on with LIFE as we know it and do something GOOD to help others!
      KNOW that you were right to keep at it to get a diagnosis, following your instincts is often hard. But, it’s far easier than other options.
      A Heap of HOPE is sent your way thru this ether.

    • Anonymous
      October 17, 2009 at 10:58 am

      Jersey Mike,

      Best of luck to you that all goes well and you get diagnosed.

      Shirley

    • Anonymous
      October 17, 2009 at 1:03 pm

      [FONT=”Book Antiqua”][COLOR=”Sienna”]Jersey Mike, I wish you all the best.

      I think you’ll be at the very best place to get your dx and treatment plan. Their reputation is superb.

      I did much checking before I chose a local neuro. As it happens, she did her residency at Johns-Hopkins and also had a Fellowship there. Smart cookie! Wouldn’t have been offered the Fellowship if she hadn’t been.

      If I hadn’t found her, I would’ve been trekking cross-country to Baltimore myself.[/COLOR][/FONT]

    • Anonymous
      October 18, 2009 at 3:20 pm

      Good Luck Mike,

      I hope things turn around asap and that you feel better.–tim–

    • Anonymous
      October 18, 2009 at 5:08 pm

      [QUOTE=mungo181]Hope they hook you up down in Baltimore. Sorry you got bad results 🙁

      You haven’t found anyone in NYC you like? I’ve been at just about every hospital here. I like Columbia-Presbyterian the best. I just started seeing Dr. J. Kirk Roberts. Seems pretty smart. It’s hard to find a good neuro who willing to listen to his patients. My last neuro (not at Columbia) also tried to take me off pred, and then when I relapsed his office would not give him my messages!

      -Marie[/QUOTE]

      [SIZE=”4″]I was there for 4 years. When Dr. Gooch left, so did I.[/SIZE]