My case.

Ok, first I would like to warn you that this post might be a long one. I am going to shorten it as much as possible but I have had GBS for 8 years and alot has happened. I would also like to apologize for not being around as much as I would like to. I have four beautiful children and they keep me pretty busy.
It was late summer in 1998. I had just started a new job and was working my butt off to get hired in. I suddenly started getting weird lower back pains one morning and by the time I went to bed I was getting another odd pain that ran under my shoulder blades. I thought I pulled something or whatever and blew it off.

The next day I noticed that I could no longer run without my legs feeling “heavy”. I fell down once trying to keep my daughter from getting into something. It felt like my legs just didn’t work. Anyway, the next day I could barely walk. I still blew this off thinking that I had somehow just pulled something and pinched a nerve. Too many sports I guess, lol. That night I was eating ice cream and I couldn’t taste it. That’s when I took off for the ER.

The local ER thought it might be GBS because parts of my body were quitting while I was there. They sent me to another hospital that could handle it. That hospital brought in a neuro at 10 p.m. and that’s where I was diagnosed. By this time I had pain in my neck as well as the left side of my face.

I did do the average tests like MRI’s, Cat scans, and X-Ray’s. No lumbar puncture was done however. Over the next week I was doing the plasma transfer and the attack lasted about 10 days total. I lost everything but the right side of my face and my lungs(I was lucky). I only lost my stomach for a day as it was working the next morning.

I was in the hospital for 25 days. I checked my self out early for my sister’s wedding. I did continue physical therapy and follow ups with the neuro. Over the next few months I got my strength back but my lower back continued to hurt and I kept getting what I called “nerve attacks”. I still to this day am not sure what those are called. It’s feels like a swarm of electricity concentrated on one area that comes in continuous waves. I also suffered from occasional weakness that was usually related to being tired or emotionally I was aroused(not sexually). The most common sign is my left eyelid would and still does, get lazy. These symptoms never went away.

I went back to work about eight months after the attack began. Shortly after I started working my neck would would spasm and hurt excessively. This particular pain has become a daily thing for me over the past year and has pretty much rendered me crippled. I will get to that later, now back to topic lol. The neck pain would last for a few days back then and I could work but I just couldn’t turn my head.

As time went on, I had to leave my job because I was about to be fired. I had to keep taking days off because I would get the flu alot, catch a severe cold, or get an illness I haven’t had before(I got pneumonia, bronchitis, and a series of sinus infections). I went from a guy that would never get the flu and colds weren’t not an issue to a guy that would get sick regularly. Apparently, my immune system had become shotty. My recovery time for common illnesses had also increased by at least four.

The next position I held was a smaller company. I was rebuilding high voltage circuit breakers and the gentleman that owned the company was more forgiving about my illnesses because of my work ethic. I busted my butt for him. Two years later I blew out my left ankle and we both decided it was time for me to move on because I had gotten gradually weaker physically anyhow. The place was cold and my muscles didn’t agree with it. There I was, a 30 year old man that once was extremely fit(I played alot of sports and was in the service as well) that now had the body of what felt like a 50 year old man.

At this point, my wife and I decided that it was best if she worked and I stayed home with the little ones. She found a great job that she still does and reallistically this was a better situation for her. I have more patience with kids and she is happier in the working world. It is/was hard for me to deal with as a man though. That’s when I started to slip into a major depression. More and more I just wanted to die as my body grew more painful and weaker.

The night of January 3, 2005, my fourth child and my third son was born. For some reason I was really stressed out during labor and of course this session of labor was the longest yet. By the time my son was out of the womb my left arm and portions of the left side of my face had quit. Dead, no movement. I was suffering a relapse of some sort and refused to leave my wife and my newborn son. In fact, I did nothing until after my wife had gotten home and recovered some what. My arm had come back after some rest but there were some bad things happening.

The neck pain had now become a daily thing but a low level. My already shaky hands began to shake more violently. The pain in the shoulder blades came back. Alot of my strength was depleted. Choking on food became a daily thing because of the swallowing reflex not functioning correctly. This used to be something that happened once or twice a month. The “nerve attacks” became more frequent. I even began to experience tics.

Since that time, things have steadily gotten worse. Just last week I had what I call a “shut down”. It’s where everything is so tired that your body ceases to want to function. I usually pass out for a few hours and wake up feeling ill. These aren’t that common. I have to run myself into the ground for this to happen. Anyway, after the shutdown my left leg had lost most of it’s strength and I needed a cane to get around. I gained some of the strength back but it still hurts badly to walk. The constant trembling I felt grew stronger. The pain in my neck and back increased again.

Now to why I am writing all of this. I know that I might have been a little vague and that I have left alot out. I just don’t have the time or the patience to do so. I am currently seeing a neurologist, a pain management specialist, and my family physician. Over the past year I get this infux of pain around my neck and have been receiving a series of pain meds for it. That’s why I am seeing the pain doc. My neuro has been with my for 6 years now and has tried all the tests for MS and such. He has also prescribed me neurontin in the past as well as most of the other common neuro meds. The pain doc has currently put me back on neurontin as well as vicodin for now. When I saw him for the first time, last month, and explained to him my past including the pain I felt then and now he told me that pain isn’t associated with GBS. This has ticked me off somewhat. I called today because the pain has grown some and I swear they think I am looking for narcotics. Which I promise you isn’t the case. I like being clear minded and keeping my body drug free. Sure, I experimented in my early 20’s but I never ever touched a narcotic. I didn’t want to go that far.

I am currently looking for a new neuro as well as a pain doc. I have grown tired of being told what symptoms I have and don’t have. My problem is that I don’t know how or where to look. I made an appointment to see my family physician of 30 years to see if we can figure something out. Also, I read some things about new treatments but I don’t know what they are exactly. Oh, and one last thing… do any of you have symptoms similiar to mine. And last but not least what is the difference between GBS and CDIP? Sorry for all the questions and thank you for your time. You all have no idea how much it has meant and means to me.

Lol, I have something else yet to say. My depression is under control and I am doing well mentally. I actually feel better now than I have in almost a decade. I still do therapy and will keep doing so as long as I need to. I am sorry that I wrote this much and I also apologize for being all over the place with my writing. I spent a couple of days writing this so it was easy for me to get off track. Thanks again.

CK
(CuriosityKills is my gaming name, CK for short. Gaming is my hobby since GBS)