Just got posting rights!

    • Anonymous
      October 15, 2007 at 6:30 pm

      Ok so I am never gonna try and use this f***ing spell check again since it like totally erased everything I had typed! But I’ll try and type it all back as best I can.

      Hello all,

      I have been reading posts for the last couple of days waiting until I could share my story with you and ask a couple of questions.

      My name is Melinda and I was diagnosed with GBS in Feb. of 2004. But I want to start a little before that. I joined the Navy in December of 2000 and got stationed in VA in 2001. Since I was on a ship I went on deployment for a 6 month “cruise” as they call it (HA!). We got back in August of 2002 and everything was peachy keen.

      In early February of 2004 I got sick and went to the ER. I was diagnosed with Bronchitis and Sinusitis and was sent home with some medicine. This was over the weekend. After coming back from the ER I continued to get worse. I lost the ability to get up once I was one the floor. I just thought it must be the medicine they had given me and would report to my ship doctor on Monday.

      Monday comes and I am not any better. I get in my car and drive over to the ship. Unfortunatly it was winter and it had snowed that week and there was ice on the ground. So once I parked my car I decided that I should crawl out so that I didn’t slip and bust my head open, however once I was on the ground I couldn’t get myself up and there was nothing for me to pull up on so I waited. I waited until I saw someone from work I knew and asked them to help me up (not an easy thing to do and I let several others go by that I didn’t know).

      The really bad news is there are 30 steps up the brow (like a staircase but the military makes up its own words for everyday things haha) and it took me 10 minutes just to get on the ship and there were more stairs where those ones came from. Once I finally made it to medical after falling up a starway or two they sent me away and asked me to come back a sickcall. And then again when I reported at sickcall they asked me to come back once it was over. Finally the doctor sees me and says “Well I can’t tell that there is anything wrong with you so go back to work” What an a**hole! Well I was like forget you and went down to have a cig, but I fell down the stairs, luckly for me one of the other doctors caught me and said “Oh no back you go!” They sent me home and said if it gets worse call 911.

      So I went home and sure enough a couple of days later I was getting up to go to the bathroom and I passed out. I called 911 and they came and got me. There at the CIVILIAN HOSPITAL I was diagnosed with GBS within a couple of hours and sent to ICU to be monitored. All in all I spent 10 days in the hospital getting plasampheresis.

      Once I got out of the hospital I was put on limdu (taken off the ship and assigned to a desk job). I spent another 10 months in the Navy and then was medically discharged with 30% disability and 100% medical coverage.

      I came back to Chicago and started college at NEIU. Around May 2006 I got a bit worse and my neurologist said my diagnosis had changed to CIDP and she gave me my first treatments of IVIg. I was given one treatment a month for three months. That really helped for about the next year.

      This past April I started to notice that I was getting worse and in Augest I got another treatment of IVIg and just received my last of the three this past Monday. However, it doesn’t seem to be working like it did the first time. Now on top of all the other things I had I am experiencing fatigue, insomnia, nausia and headachs. I already had the muscle cramps, full body weakness, waking in the night, sensitivity to sunlight, and numbness in my toes.

      I finally made a list of all of my symptoms, at my aunts request and we are going to see me neurologist tomorrow. The problem is I’ve never really talk about my condition, maybe just to my dad and my aunt but not really to my neurologist and I think I have let it go too long. I guess I never wanted to be considered a complainer so I just deal with what ever is going on in silence.

      My aunt though it would be a good idea if I looked to see if there was a forum for CIDP and here you guys are. I’m glad I came here because I know for sure now that I am not alone in my struggles. Ok now that you have so graciously listened to my story I have a few questions if you don’t mind.

      I was wondering if any of you experience muscle cramps because I haven’t ran accross anyone talking about it. I also worry about working. I am going to school to become an elementary teacher and I was wondering if there are any teachers on here that work a “normal” work week. Because right now I’m in the pits! I’m battling fatigue and insomnia and it is really hard! I don’t know how I would be able to work like this, it’s hard enough to get out of bed to make it to my classes.

      I’m sure I have many more questions but this has been a long post and I’ve already written it twice (haha). Thank you for taking the time to listen and any advice or answers would be greatly appreciated. And also ignore any misspelings since I can’t check them for fear of having to write this a third time!

      Thanks so much!


      GBS onset 2004
      CIDP 2006

    • Anonymous
      October 15, 2007 at 11:15 pm

      I think you put what all has ‘happened’ to you in the past in a pretty concise format. Tho, knowing docs and THEIR VERY short attention spans it mite be a tad long? What I’d do is use that ‘puter and TYPE all events out in a chronological fashion… also noting what tests were done and where [IF you know…BTW You better get copies of past tests and reports for your self, …for the future]
      Short story? Got sick X, Got sicker Y, got sorta better Z, Kept on being not good for A,B&C…Here I am? HI! Now what can you do to me or for me to help? {then expect the whole TESTING regimen, etc.}
      It is good you are here there are LOTS of good folks who can help you learn about and live with this ‘thing’ called CIDP…
      Good luck Melinda, at least you are in a fairlly big city, where good docs can be found…Now, whether you actually FIND a good doc [meaning, one you can really talk to and feel as IF they’re actually listening,, different aspects?] Is gonna be up to you…But never ever get discouraged….Good docs are out there and help by the right treatments is too! Don’t lose faith or hope!

      It also takes a LOT of courage to ‘put it out there’ for the first time. It isn’t easy at ALL!!! It gets easier with practice? Also, if you read others posts here, you will find that all are supportive and no one ‘bites’ or anything like that. Read, learn, and do not ever think that any question is too silly seeming or stupid. Some of what goes on with us is ‘silly or stupid’ seeming, and docs have no explanation or reason for this ‘stuff’. Getting a disease/condition such as this is enough to learn about in the beginning…then you learn to walk, wheel or run with the rest of it. WELCOME!

    • Anonymous
      October 16, 2007 at 10:14 am

      Hi Melinda, Welcome to The Family. Don’t use spell check-well you have experienced what it really does to posts:o There are teachers on here with cidp, they have their share of problems and have learned/are learning how to cope with them. Feel free to ask as many questions as you have or just vent when you need to. We know how you feel we’ve been there also. There are quite a few cidp/gbs people in your neck of the woods, I’m sure they will be along soon to add their bit. as will the teachers on this site. Just know it might be a day, a week or so, everybody has their own demons to get through also and some don’t get on here until they feel well enough-don’t take it personally. we all have our limits that we have to live with, some more than others, so be patient. Take care and get enough rest especially with a full schedule like you have. Take care.

    • October 16, 2007 at 10:22 am

      Hi Melinda,
      We live in the Chicago are as well. My ten year old son has gbs. Well, it has been gbs, cidp, gbs again. This is such a confusing ailment. If you ever want to talk, private message me your phone number.
      Dawn Kevies mom

    • Anonymous
      October 16, 2007 at 5:00 pm

      Thanks for answering my questions guys. I went to see my neurologist today and we are gonna get my labs again and see where they are in relation to when I was first diagnosed with GBS back in 2002 and also going to do some kind of breating test. She also is setting me up for more IVIg treatments. She wants to avoid starting me on any medication as long as we can, which I agree with. However she did give me Cymbalta for my neuro-related pain and Rozerm to help me get some sleep.

      Good news is is that it looks like a relaps – and with that it means that I will be able to recover from it and get back to where I was. I caught the flu in late August and it apears that people like us can afford to get the flu without serious consiquences! Oh well at least now I have some hope of pulling out of this before I start my clinicals which are next fall…that is if I don’t get the flu then haha.

      Well hope everyone is doing well and today is a good day. Still sleepy but good news and hoping for the best! 😀

    • Anonymous
      October 16, 2007 at 8:45 pm

      Welcome to the forum, I just recently started posting myself but have visited the site and read the post for a while. I love reading the stories to know I am not alone because for a long time I felt like I was I have a great family and they were all very concerned but unless you have the symptoms they really don’t know how you feel. I remember the first time I fell and couldn’t get up, it happened to be at a Bar, how embarressing, of course everyone thouhgt I was fallen down drunk which I was not, I think about it now and laugh. Good luck with you neurologist and one thing I had to learn was to advocate for myself. I actually taught Headstart in Colorado and was able to keep up with the classroom. You just learn to not overdo it and lots of rest. My family thought sometimes I sleep to much but I know my body and what it needs.

    • Anonymous
      October 17, 2007 at 12:18 pm


      Welcome to the forum, sorry about what you have been through but glad that you found us. Shannon Byers is a local liasion near you in Chicago and is also a good friend of mine, if you contact her she can be a huge help. Sometimes it’s just nice to have someone to talk to who understands. Her email [B][I]Shannon.Byers at cit dot com [/I][/B]and her fiancee Ben had had GBS for several years now. Also if I can ever be of any help feel free to contact me through private message on here or email. Take care and welcome to the forum.


    • Anonymous
      October 21, 2007 at 11:57 am

      Hi Melinda, welcome to the family.