Haven’t wrote lately but need some advice.

    • Anonymous
      January 20, 2011 at 3:54 pm

      I haven’t wrote in a long time but I’m on here at least once a week. You guys are the best. I need some advice & I’ll try to give you the shortest version. In Feb 08 my husband was numb & started falling etc. Was diagnosed with GBS & IVIG for 5 days. He was lucky it did not go to his lungs & was sent home and to rehab. Seem to be Getting Better Slowly & then April 09 became weaker again & after numerous calls to the Neuro ended up getting another 5 days of IVIG. So began the process of healing slowly all over again. The neuro said if continues may be CIDP but never any follow up visits done. He said unless you start getting weaker etc no need to call. Well in the last year (when my husband is stressed) job mostly, his arms & hands get weaker & tingle, (His feet have shooting pains & tingle all the time & always fatigue) he thought he had overdone & rest would usually help. In this time he has had no drugs. Only supplements that I have prescribed cuz I’m a nut about it lol. And we both feel they have helped. So now he’s having a rough time & so he called the Neuro & when they called back they said that dr is no longer with them but made an appointment for March 9. Now he is not falling down or I’d just go to the emergency room, but seems to not be getting better. I’ve been contemplating just taking him to Mayo or Wayne University to Dr Robert Lisak, but it would probably take forever to get in there too. Should I just by pass the neuro or wait for that appointment & have them refer him? I could probably get a referral from the family doctor. And does anyone know which one would be best? We are closer to Wayne University. Thanks, and again this forums people are life savers and they don’t even know it.

    • Anonymous
      January 20, 2011 at 7:50 pm

      Since you are close to Wayne State I would just try to get in there. Keep the appointment you have with the neuro on March 9th & see if you can get in sooner to Dr. Lewis or Dr. Lisak.


    • Anonymous
      January 20, 2011 at 7:55 pm

      Get him to the best neurologist you can get in with the fastest. I live in a rural area in Pennsylvania. When I first began to really suffer with my CIDP symptoms I attempted to get an appointment with a local neurologist and was told it would take 4 1/2 months to get in! I went online and located a renowned neurologist in New York City. I figured it would take forever to get an appointment with him, but I had nothing to lose. I called his office and was able to get in within five weeks!

      The lesson here is that you won’t know when you can get in with a physician until you call for an appointment. You can always make an appointment with a physician and then contact others too in an effort to get into them earlier. If you do get in earlier, simply cancel the other appointment(s).

      You can also make an appointment and ask to be placed on that physician’s cancellation list should an earlier appointment open up. When you do that, though, you need to follow up. Don’t rely on the doctor’s staff to call you. Call them frequently to inquire as to cancellations. Good luck.

    • Anonymous
      January 24, 2011 at 8:54 am

      [B][/B]Thanks guys for all the advice. We are working on getting into Wayne State also.