My New Heroes

    • Anonymous
      August 28, 2008 at 7:42 am

      Hello New Friends,

      I have been ill for two months. I just joined GBS/CIDP Foundation a few days ago. I want to say that all of you are my new heroes. You have encouraged me that no matter what happens to me in the next months and years, that I will make it.

      My neurologist isn’t really sure what I have. I suddenly had tingling and numbness in a few toes that over a weekend expanded to hot, prickly feeling, deep, excruciating pain in feet. Then it spread to my hands and ankles. Five days after the initial tingling, everything went North. My entire body was numb up to my hairline, my eyelids were numb, left face numb, arms and legs very heavy and difficult to move, breathing slowed down. The ER doctor thought I had MS and released me because my condition was not acute. Within a week, the major symptoms started to ease up–I can walk and move around okay. About three weeks after this, I came down with a case of shingles. The MRI and nerve conduction study led the neurologist to conclude that I do not have MS. He said he thought i had mild GBS with acute neuropathy.

      Over the last 4 weeks I’ve had episodes of feeling really terrible and residual symptoms flared up–itching/pain in feet, difficulty swallowing, some abdominal pain etc. This could be due to the shingles.

      I have had major, major panic attacks–I’m really scared and afraid of what will happen. It is terrifying not knowing what my body will do.

      But, after reading the postings on this forum I have been encouraged–I keep reminding myself to take a lot of deep breaths. You have inspired me to conquer whatever it is I have–to try to get some control over my illness and not let it run my life.

      Thank you so much for being out there–I really need all of you.

      Love, a Big Hug to All of You, and Very Best Wishes,

    • Anonymous
      August 28, 2008 at 9:26 am

      Welcome to the forum. I hope you find lots of support here as well as answers to your questions. There are a lot of helpful people on the forum, you just have to ask. You summed it up well in your post of “You have inspired me to conquer whatever it is I have–to try to get some control over my illness and not let it run my life.” That is a great attitude! ๐Ÿ™‚

    • Anonymous
      August 28, 2008 at 9:42 am

      Welcome!:) I have learned so much from others on this forum. I saw where you are 52. I am 53 & was 52 when diag. with GBS last April. This illness really sucks at times but there is so much support here it is wonderful.
      Again, welcome and ask anything you need to know & there is always someone out there with the answer.
      Good Luck Sara!

    • Anonymous
      August 28, 2008 at 12:16 pm


      this place is amazing! when i first came, i was pregnant and docs thought i had gbs or myasthenia gravis. i was pregnant (baby is now 4 weeks) so they couldnt really do any testing and treatment. i have recently found out that i most likely never had gbs, and the folks here told me i was already family. despite not being a gbs-er, i still come here frequently. and, if you have anything else you like to talk about or need help with, there is always somewhere here to do that. if there isnt a forum about what you want to talk about, then you can start one. nice to meet you! take care!


    • August 28, 2008 at 12:49 pm

      Hey Sara,

      I developed a “mild” case last February, mild in the sense that I was not hospitalized. That, at least, was a blessing!

      It can be quite painful, although I’ve had some relief this week.

      I don’t post very often, but I check in everyday. There is a wealth of information and understanding here. I’m very glad I found these fine folks.

      Good luck and hang in there!

    • Anonymous
      August 28, 2008 at 6:53 pm

      Hi Sara, Welcome! I am 54 and had GBS when I was 29. I still have residuals so can empathize with some of what yo are experiencing. If there is anything you need to know or questions you have, please, just ask.

      Look forward to getting to know you.

    • Anonymous
      August 29, 2008 at 2:13 am

      Hi Sara, Welcome to The Family! Feel free to ask any questions or just vent when you need to, we understand. Keep Your positive attitude and You’ll be fine!! Take Care!:)

    • Anonymous
      August 29, 2008 at 3:07 am

      Welcome to the forum “Family”, Sara! ๐Ÿ™‚

      And, a very well versed, and thoughtful message…………….I think I could speak for everyone here in saying that your “My New Heros” thread has lifted everyone’s spirits and reminds us of the real purpose that these forums serve… give hope, knowledge, encouragement, support.

      Thank [B]you[/B], Sara. ๐Ÿ™‚


    • Anonymous
      August 29, 2008 at 7:01 am

      Welcome Sara! A little late posting because I felt bad the other day, but welcome aboard! Hope to see you well soon

    • Anonymous
      September 3, 2008 at 2:37 pm

      Hi Sara-welcome to the family. Am late posting my hi, because my computer has been down for 2 weeks. Not knowing what’s going on leads to those anxiety attacks and so does acute pain.

      Have a few questions-justing filling in the blanks. Did you get an ivig treatment at all? Quick treatment for the shingles? And anything for the acute neuropathy pain and for the anxiety attacks? I am not here to push meds for everything. Aqua therapy, messages, just walking out back and screaming or taking a short walk, whatever you can take and deep breathe. For me stress increases my pain and sometimes get anxious even after 8 years of having cidp. And you should not have to suffer.

      Please ask any questions and feel free to PM me anytime-just click on my name top left and send me a private message.

      Again, welcome to the wonderful family; someone is always around to visit with.