Update from Rod in Louisiana

    • Anonymous
      May 18, 2009 at 8:41 pm

      Hi everyone. I haven’t posted in a while, and I don’t want everyone to think that I’ve just faded away, so I thought I’d post an update.

      Since none of the standard CIDP treatments (Prednisone, IVIg, PE) seemed to work for me, my neurologist told me I need to accept that this is as good as it’s going to get. I may get to that point one of these days but, at this time, I’m a long way from acceptance.

      I’ve always had the nagging thought that my symptoms may be due to something other than CIDP. I’ve done extensive research on these symptoms and I’ve found that CSM (Cervical Spondyolotic Myelopathy), which is direct pressure on the spinal cord in the cervical spine, also causes the same symptoms.

      Since I already had minimally invasive lumbar surgery at a clinic in Florida, with outstanding results, I asked the surgeon who performed my earlier surgeries to take a look at my cervical spine MRIs. When he put them up on the light box, even my uneducated eye could see that my cervical spinal canal was almost non-existent, due to osteoarthritis. The surgeon recommended surgery at four levels. So during that trip, which was three weeks ago, he did a roto-rooter procedure on both sides of C5-C6. After those two procedures, I’ve had some relief of the numbness in my fingertips. I’m scheduled to go back in August, for similar procedures on two more levels.

      I firmly believe that many, if not all, of my problems are due to CSM. However, being a person who believes in covering all the bases, I’m also going to assume that I may have CIDP and I’m going to work with a different neurologist.

      I contacted Dr. Richard Lewis, one of the doctors on the board of the GBS/CISP foundation, providing my history and asking if he’d accept me as a patient. Dr. Lewis responded immediately and told me he would indeed treat me. But, in his email response, he told me that he didn’t understand why I would come all the way to Detroit for treatment when two of the foremost CIDP experts in the country are at the LSU Medical School in New Orleans. He recommended Drs. Austin Summer and John England.

      I have an appointment with Dr. England on June 23 for new NCV and EMG procedures. It’s going to be a busy summer for me.

    • May 18, 2009 at 11:13 pm

      Sounds like things are looking up Rod. Glad you had the courage to be persistant and strong. It has paid off!! Good luck with new doc, keep us posted!
      I am considering a chiro. for Kevin, I wonder if manipulation of c1,2,3 could help him with his intense daily headaches and sinus issues!
      Good luck!
      Dawn Kevies mom

    • Anonymous
      May 19, 2009 at 12:43 am

      Hi Rod! So so sorry that you have been going through all of this! I will keep you in my prayers and hope all goes well. Wow! You really are going to have a busy summer! Sounds like the summer I had last year and it was no fun picnic either. I hope you recover soon and get back to normal and pray that the spine was the culprit and it fixes all your problems making you 100 percent well again. Meaning that this was not CIDP after all and the surgeries correct everything that was causing you problems. Keeping my fingers crossed for you! Good luck Rod! Good luck!
      Linda H

    • Anonymous
      May 19, 2009 at 7:26 am

      Hi Rod,

      Good thing you got the nerve inpingement focused on. I am sure you will
      find relief once they do all the levels.. Once you see what you have after that, you’ll better have an idea how much was this and how much was that.

      Remembering back, you had always brought up the back. Can’t understand how that would go overlooked with the symptoms you had. they had MRI. me head to toe before moving on.

      Anyway. Your on the road to getting better and thats good. You had us worried there for a bit.–tim–

    • Anonymous
      May 19, 2009 at 1:04 pm

      I have an appointment with Dr. Appel in July to get a second opinion and seek treatment for my CIDP that has left me practically bedridden. Does anyone have any opinions of Dr. Appel. My neuro here in Baton Rouge wanted me to see him or go to Mayo in MN. Help please!

    • Anonymous
      May 19, 2009 at 1:05 pm

      My neuro didn’t mention the two doctors in New Orleans to me. I may give them a try. It’s alot closer to me than Houston. Thanks Rob!

    • May 19, 2009 at 4:48 pm

      Hey mon!

      Y’all might try eaten more boudin and crawdads and some laripen good gumbo. It might cure everything. Least I found it helps me to forget. Any how a good dr. in Nawlins shore will fix you up right fine.

      Much luck to you and may your health improve. You hear.:) 🙂

    • Anonymous
      May 19, 2009 at 7:22 pm

      Whats the difference of what you call CSM (I could not find it in the web) and Chiari or Spinal Stenosis?
      Spinal Stenosis many times diagnosed as fibromyalgia (disease I think is a one size fits all dx).