Finally An Answer!

    • fairly_odd_mother
      October 18, 2006 at 4:11 pm

      Hi all

      I finally got in to see a neurologist after 3 months and after hearing my story, he confirmed what i knew all along. GBS! Not sure I [I]should[/I] be excited, but I [I]am[/I] very excited to finally have a dr say that.

      I have a nerve conduction study scheduled for oct 26th and will make a PT appt very soon. He said treatment at this point is pointless since I am apparently in the recovery phase. I knew that but didnt care since I already knew I am recovering. I have felt things changing for the better the past couple of weeks, and with more sheer willpower I will be out hiking with my kids again.

      Thank you for all of your support and the information I have found here. I plan on sticking around esp now that I feel like part of the “family” for real. I also want to be an integral part of that letter writing! I’ll do the research…I have found so much and it irks me more dr’s arent aware of it! I think including some real life stories with the differences we have all experienced would be a great addition as well. Count me in!!

      Hugs and prayers
      Lori

    • Anonymous
      October 18, 2006 at 6:19 pm

      Lori,

      I know just how you feel to finally get a diagnosis. It took forever for me to get answers too. We went through so many scary possibile ones that GBS was really a relief.

      Glad you are feeling better too.

      Take care and be well.

      Suzanne

    • Anonymous
      October 18, 2006 at 6:23 pm

      Lori,

      I’m not sure if congratulations are quite the order on your dx, but I do want to commend you in your persistent effort to get the right answer. And welcome ( as if you weren’t already very welcome) to the Family.

      And remember that Gene has said repeatedly that it may never be too late for Ivig and PP. Might want to check that out too. Don’t let doc say no based on the fact that you appear to be getting better, becasue you don’t know what is happening at the cellular level. There may still be some benefit to it.

      Hugs and kisses to you and yours!

    • Anonymous
      October 18, 2006 at 7:29 pm

      ditto with suzanne! i was misdiagnosed at first too. feels good to finally know you’re not going nuts doesn’t it? i’m happy for you that you now have a name to go with the problem. my prayers are with you to soon be hiking with your kids.

    • fairly_odd_mother
      October 18, 2006 at 9:09 pm

      Thak you all for your responses. Yes everyone has made me feel most welcome since day one. This forum has helped me so incredibly much and I am grateful for the understanding, support, answers, and help.

      Thank you a million times plus inifinty!!!

      Lori

    • Anonymous
      October 19, 2006 at 1:16 pm

      Hey there… I had a relatively quick diagnosis as I was hospitalized quickly after the onset. They had theories and GBS one what my neuro though but they were thorough and ran tons and tons and tons of tests around the clock for almost a month to be sure to rule out anything else. But I was treated for GBS within a couple of days when IVIG started so I dont know the relief you have of waiting this long… BUT I had some scares too when the first doc (non-neuro) thought it was Lou Gherigs so I do undertand how nice it is to know what really is going on and that sometimes a diagnosis of GBS really is a good one 😀

    • fairly_odd_mother
      October 19, 2006 at 1:37 pm

      I would have lost it if they had said ALS! My dad died of that when I was 2. I had heard of the rare possibility of it being genetic (I was concieved when he was sick so in my mind I was always afraid I would “catch” it).