Just got posting rights!

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!

Melinda

GBS onset 2004
CIDP 2006