AnonymousNovember 15, 2006 at 7:28 pm
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.
(CuriosityKills is my gaming name, CK for short. Gaming is my hobby since GBS)
AnonymousNovember 15, 2006 at 7:49 pm
I am a gamer too (Counter Strike, Quake, FEAR) too so we have more then this stupid disease in common 🙂 If you want I would be happy to help you out with answering any questions you have if I can, I am a liason in Southeast Michigan, not sure where you are, but that doesn’t matter. Over the past 3 years I have had to deal with alot of the same **** as you are. You can email me [B]jerimyschilz at hotmail.com[/B] anytime if you need too.
AnonymousNovember 15, 2006 at 11:12 pm
Welcome to the Boards. It is nearly 2 am with me so I really ought not to be attempting to reply (especially as I have been drinking). But it struck me in your post – please, stop apoloigising for telling it like it is. You said that you are sorry you wrote that much – now, you are just being very polite I suspect. If you think you wrote a lot, you want to see me when I get going.
I happen to believe that you only said the basics, you left out a lot of stuff about what was happening in your head, I suspect. I suspect that, because I met depression.
I must be honest, it is too late at night for me but I have to say I noticed that you said: “It is/was hard for me to deal with as a man though.” Oh, but what you did is hard for a man or a woman. As a man I suspect it is even harder deal with – becauase it is not the accepted norm. Bringing up chldren is seriously hard work. That might go someway to explaining the number of females on anti-depressants. And you are also on them.
Sorry, it’s now 4 am and I must stop.
AnonymousNovember 15, 2006 at 11:56 pm
I truly don’t believe that what is going on is in my head. Weakness in my knees and legs that seems to fluctuate. Spasms in my neck and back. Very shakey hands. About one third of the muscles in my legs feel dead now. I will have good days followed by an equal amount of bad. It’s really strange. I already have a permanent limp because of pain in my left leg when I walk. When my legs are on the bad days everytime I take a step it almost feels like my knees are going to explode. Constantly tired(already diagnosed with Chronic Fatigue since GBS started).
My mental status if very good at the moment. I don’t see the little ones during the day now. They are in preschool and daycare as I am about to start college again to finish getting my degree in computer science. So I am very happy with my current situation.
Please do take this the wrong way Teresa. I am not angry. I am just explaining is all.
Jerimy, I am located in Northern Ohio between Sandusky and Cleveland. I am not far out from Michigan at all. On a lighter note I am a massive Buckeye fan lol. I am a CoD2 player currently but have been playing it since CoD1 and UO. I need to redownload the FEAR multiplayer, that game is truly a blast. My xfire is curiositykills and my id will be =GvL=CK?
***Edit*** I may have misread your post Teresa, forgive me if I did. Midnight here and I have company that won’t leave. I need to get to bed.
AnonymousNovember 16, 2006 at 3:01 pm
I really understand your post. Really. I am almost 10 years post and am so confused and lost as to what is happening to my body. I am now 49 and feel like a really old woman. This is scary. I have no children and parents have died. I fit in the space of society that people want to forget about.
Anyway, back to you. You indicated you are still in therapy – I assume mental? Me to and it helps to talk about this, AND this IS what we are here for. So rant on page after page. It is okay. I don’t know what is happening to our bodies, but I don’t think there is anything medically that can be done. Keeping a good attitude and knowing our limitations is a must. And as I posted in another section, I’m going to bed even earlier than before – now 7pm.
Write some more and see if you can dig up the bottom stuff. I’m listening.
AnonymousNovember 16, 2006 at 3:13 pm
[quote=CuriosityKills]… Jerimy, I am located in Northern Ohio between Sandusky and Cleveland. I am not far out from Michigan at all. On a lighter note I am a massive Buckeye fan lol. I am a CoD2 player currently but have been playing it since CoD1 and UO. I need to redownload the FEAR multiplayer, that game is truly a blast. My xfire is curiositykills and my id will be =GvL=CK?…[/quote]
Yeah I wont hold the fact your a Bucknut against you 🙂 I will add you in xfire, also if you use any of the messengers let me know here, PM, email whichever and I will add you. Take care.
AnonymousDecember 14, 2006 at 7:10 pm
Hey, CK: Post GBS 9 years this month….weee. I ‘m still swinging, and I. too, have had to change my lifestyle, which included gaming. I founded the largest CS gaming community since I had nothing better to do – still play games much mostly with my 77 year old Father and 49 year old older brother. As for pain, well , I smoke POT every now and then, and once in a while need a darvocett. I take Effixor, which is doing well by my dysthymic depressive state. Honestly, I would have much rather missed the whole GBS experience, but such is life. Glad you are doing well! You remind me that we all must adapt and learn to cope, that gaming has been a wonderful outlet, and I will continue to explore the cyberworld as if I had my old vitality. Cya out there!
AnonymousDecember 14, 2006 at 8:53 pm
Interesting to hear you guys talk about gaming. I never did any online stuff but in the rehab hospital played a game of world conquest about eight hours a day-couldn’t read or concentrate on tv but I loved that game and feel like it saved me from a lot of depression and despair. I still love to play it now and am glad to hear from others who got into games as well.
Chrissy-it must be scary to feel alone and forgotten. At least you know on this site you are not forgotten-I certainly enjoy reading your posts.
CK-I had to cut my work in half and turn over daily life tasks to my wife. She handles all the money now and runs the show. I suffer from a great deal of fatigue as well and know what you mean when you say it is hard for a man. I had great plans that now don’t mean much to me. My life is quiet and I have adjusted to my limitations-but at times it is very hard for my male ego to accept.
Best to all, Jeff
AnonymousDecember 14, 2006 at 9:49 pm
how much neurontin are/were you taking? take care. be well.
OH SE Ohio in Zanesville Dr. Robert Thompson 740-453-0680 . He currently has at least 2 of us as patients. I believe that the more of us that go…[he] will know how to treat us. I was also on the Rehabilitation Unit at Genesis Good Samaritan Campus (hospital) 800-322-4762 in Zanesville, Ohio. They were absolutely the best. I was referred to Ohio State but was extremely dissappointed in my exam there. Zanesville has great hospitals. I was treated at Mount Carmel East in
Columbus and got great care there.
*NOT recommended – Clevland Clinic* I have seen about 10 GBSers at Clev clinic and could not recommend a single Dr. Not because they are not good but because none of them impressed me. If your ins. will ok you to go to University hospitals (right next to the clinic) I would highly recommend you to go there. The whole neuro floor is fantastic.
a 2nd gbser says no go to clevland clinic – i wouldn’t go back to cleveland clinic, they did nothing to give me a second opinion except run the same emg/ncv and sent out 2 teaspoons of blood for muscle disease testing, and ran a urine test without me giving them a sample–surprise it was normal. my neuro was upset that a well known clinic like cleveland.
3rd post new info as of 6-06. FYI the head of neuro at the Clev Clinic was let go. The news is the new head that will start in Aug and will make many changes.
In Akron call Akron General and ask for Dr Harvey Friedman. He was my Dr 23 years ago and in my opinion one of the most knowledgable in GBS. He has had at least 100 patients. a 2nd gbser agrees he is good.
Grove City area There is a new Nero. Dr. Taylor who is supposed to be good.
gene gbs 8-99
in numbers there is strength
AnonymousDecember 16, 2006 at 6:57 pm
I didn’t read anger in you first post at all. I was just trying to say that I can understand it being hard for you to deal with as a man.
I am really glad to hear that depression is not ruling you – cos it sucks.
I very much relate to you saying that you don’t believe that what is occurring is simply in your head. So many people have been told “it’s in your head” when it is quite obviously in your leg or arms or neck. All that happens is they go home and worry about their mental state while their body grows weaker. It really ticks me off.
As to a doctor saying that pain and GBS are not related. One day’s experience would change his ideas for ever. He is theorising – and scientists have a theory that the bee cannot fly. Nobody told the bee, so the bee doesn’t believe it. Just cos a doc says pain is not GBS doesn’t mean we have to believe it over our hard-won experience.
Oh, I so like Gene’s posts. They are so bang-on!
By the way, I seem to be changing because this, for me, is a very short post.
You must be logged in to reply to this topic.