What do ya think?
AnonymousDecember 16, 2008 at 8:36 pm
It all started in April of 07. My family and i was driving back from Phoenix and i couldn’t drive, for some reason i was incredibly sore. On the 2 hour drive back to Tucson the pain kept increasing, it started in my feet and hands and was moving up my legs and arms. That night i was in tremendous pain and it felt like it was moving down into my shoulders and chest. My wife took me to the hospital where i spent the next 3 days. From what i am told they ran every test they could do, however they found nothing. I was finally realeased from the hospital and went home where I spent the next 2 months on my back. I had shooting pains up down my leg and arms, the best thing was to wrap my legs in towels smothered in ben-gay. Trying to sleep at night was horrible, my arms would ache so much no matter what postion i would put them. I was freezing and yet the covers whers too heavy for my feet.
In July i was finally able to put in a full days work (with the help of a Gator ATV to get me around), it took almost a year before my ankles and wrist felt well again. Today it is still hard to get out of bed because the bottoms of my feet feels like somebody has pounded them with a hammer. I still have pain in my joints iof my hands, knees, and feet. I have occasional shooting muscle pain in my legs.
During the early days i would take Oxycotin, delaudid, and Nuerotin. Lots of Nerotin! Finally my doctor prescribed Lyrica, along with Tramadol and Percoset. That seemed to work so that i can function as a normal person. Still I am wiped out at the end of the day.
I went from perfectly healthy person where i would go sking, golfing, and even running bases on my daughters softball team to this person who has aged 20 years in less then 2 years. Can’t think of a med prescription that i previously had.
The hospital doc said it was my lifestyle that caused it, somehow a 12pack a week went up to a 12pack a day in his mind. My Neurologist said no way and basically described it as a virus that hit me however he has never said GBS. My family doctor disagreed with the hospital doc too but all he thinks if i feel allright by taking Percoset and Lyrica i should be grateful. I am looking for a new doctor, i am not sure there is one in Tucson.
i realize that alot of people on this web site have had it far worse then me and maybe i should feel lucky.
Sooo, does this sound familair? Sorry so long:confused:
AnonymousDecember 16, 2008 at 11:22 pm
I won’t attempt to diagnose your problem but it sure sounds akind to some of what I experienced with GBS. I will say that I don’t believe that a 12 pack daily would cause such symptoms. I have several friends that confirm this opinion.
I developed GBS in Sep ’07. It started with symptoms of discomfort for a day or so. They did not improve. I went to the emergency room of one hospital and was held over night. By the next day I could not walk. They were performing tests for everyting but GBS. None of the week-end staff doctors had a clue of what was going on. I decided to move and transferred to another local hospital. The Neurologists there suspected GBS rather quickly did the test to confirm it. There was much pain and discomfort over the next several months. I spent one month at the second hospital and then thransferred to another that had a program more suited to me when it came time to begin therapy. I spent two months at this hospital and continued daily therapy for about three months after being released.
I remember the times when I could not bear to be touched and laying in discomfort (and pain) without being able to move. I have regained the ability to walk and even now do some outside work. But, my feet and lower legs are still extremely sensitive and feel like I am walking on two logs.
I am not complaining but relate these experiences to give you some idea of what it felt like to another. I had it fairly bad and after 15 months am still affected some but doing doing great. I do not know much about all of the variations for this condition but from what I have learned it is a fact that each individual experiences it a different way and will also mend at different rates and to different extents. It sounds like we are both rather fortunate.
AnonymousDecember 17, 2008 at 9:20 pm
Thanks for the reply, i hope nobody misunderstood me, it was my doctor that came to the conclusion that i drank a 12 pack a day, i told him a 12 pack a week.
I think the doctor allready formulated his diagnosis and wasn’t going to look any further. Probably serves me right, my wife is a RN and she said i was a horrible patient.:D She has seen cases of GBS in the hospital and told me if it was, i was extremly lucky. Funny I don’t feel lucky. Feels like i won a horrible lottery.
You said you felt like you were walking on logs, i allways said i felt like i was walking on stumps.
I don’t know allot about GBS, i just stumbled on to the website when i was researching rhumatoid arthritis, but i read that you could catch the virus from ill prepared chicken? The only thing i could think of, i ate some crawfish when we were tailgating in Dallas at a NASCAR race. Nobody else ate any but me. Well maybe it was the beer
AnonymousDecember 17, 2008 at 10:40 pm
Welcome to the forum. First before I forget GBS is not a virus. It is an autoimmune system that gets confused and attacks its own body. It can follow a sinus infection or diarrehea. It can follow a flu shot or a tetnus shot also. There are many factors that it can follow. It attacks the periphal nerve sheath and can cause never damage if it is an extreme case. It is usually a quick onset and a lumbar or spinal tap is how they diagnois it with the protein levels in the spinal fluid. They will use IVIG or Plasma Phresis Exchange to stop the attack on the nerves. Once that attack is stopped the process of healing begins and it is a very slow healing process. The things that were effected first are the last things to heal. Usually our hands and feet. If you have an extreme case like I did your breathing can be stopped and your organs stop working and you are put on life support. I had the IVIG treatments (5) and my Doctors did not feel that was stopping the attack so they started me on the PP or PE (5) treatments and that is what stopped the attack. Many Doctors miss a quick diagonsis and don’t treat their patients quickly because it is a very rare thing and many Doctors have not dealt with any cases. I was completly paralized and some only get GBS from the waist down like my friend’s Son did 11 years ago. As you read this forum you will read some cases that are very similar to yours and others that are not as bad or worse than your case. Each case is different but each is vary familar at times. Glad you are doing much better and make sure you get your REST! Listen to your body and it will let you know when you have done too much. Don’t take it to that point or you will relapse. We all have dont that and keep mentioning this to people so they have this information to avoid what has happened to us. Keep moving and exercising those muscles, tendons and liagaments. I am glad to hear they put you in physical therapy too! You have come a long way! Keep up the great work! Ask as many questions as you want that is what we are here for. Happy Holidays and Thank your caregivers for us we all know how much they do for us and get very little credit for their efforts! Happy Holidays!
AnonymousDecember 21, 2008 at 12:19 am
As I understand GBS it is as described by the previous post. Your body contracts some virus, your immune system attacks it, as it should, but somehow gets screwed up and continue to devour the nerve coverings, possibly because the cells look alike.
I have heard all type of causes advanced but from my experience I do not believe there is any one uniquely responsible. When I developed GBS I had not experienced or engaged in anything that I could attribute to its onset. I took a flu shot but not until two months after being hospitalized with GBS. I was still hospitalized and we felt that the risk of me being able to handle a case of the flu was too great. I had no problems. This year I again took a flu shot and had no problem. Many people who have had GBS will not take the shots and I have talked to doctors and nurses who advise against it. However, some feel otherwise. I am not an advocate one way or the other. My age was a factor in my decision.
Regarding the feet, maybe stumps are a better characterization than logs.
AnonymousDecember 23, 2008 at 9:07 pm
First, let me start by saying that you need to see a Neurologist and mention GBS as a possibility. Second, even if you do not receive any treatment, your body will begin the recovery process. However, if your doctor does diagnosis you with GBS, you should push for treatment.
Finally, someone in this thread said you can relapse from working yourself too hard. There is a chronic GBS, where that may be the case, but with normal vanila GBS, you have the same probability of getting it again, as you did the first time. And that is very rare.
AnonymousJanuary 4, 2009 at 2:02 am
This sound’s same as me but my doc knew what it was lucky for me I guess.Only way to discribe pain still 3yrs later being hit with hamer in back legs feet an hand’s.Sad thing they said mine was’nt bad but that I will never be same as I was before.I can walk very short distance in house with out cain an somtimes to garage but when I try and walk to corner can’t make it with out help of cain or wheel chair.AND WHAT TAKE’ KID’S 3MIN TAKE’S ME 10 TO 15 MIN CAN’T CONTROL MUSCLES.See after attack was over an started to get feeling back TO NORMAL it stopped and stayed for year or more then went back down losing muscle mass in legs an arm’s so weak cant work out much.But that dont stop me it’s the pain THAT STOPS ME WICH IS IN 5 MIN OF STARTING LOL.Then it’s nap time lol but dont stop cause that’s not going to help.so guess were I was lucky by not getting real bad I WAS NOT IN SINCE THAT I’M NOT GOING TO FULLY RECOVER.bUT IM OK WITH NOW IT’S BEEN THREE YEARS NOW SORRY ABOUT CAPS MY HANDS ACTING UP.AND GOD HAS BEEN GREAT TO ME I HAVE WIFE AN KIDS WHO LOVE ME AN STAND BY ME AN HELP WHEN IM TO STUBERN TO TAKE UNTIL I FALL LOL. SO GUESS WHAT IM SAYING IS JUST GIVE IT TO GOD AN THANK HIM THAT YOU CAN WORK CAUSE I CANT AN MANY CANT SO IM VERY HAPPY FOR ANYONE WHO GETS THAT PART BACK SHOWS ME GOD IS ANSWERING MY PRAYERS FOR YOU GUYS AN GALS.THANKS JIM OH YES PLEASE PRAY THAT I KICK THIS SMOKING HABIT WITH NO WITH DRAWS THAT SCARES ME WITH NERVE DAMAGE CAUSE I SHAKE WHEN I SMOKE .THANKS:D GABBY JIM:D 😀
AnonymousJanuary 4, 2009 at 8:53 pm
I will see my Nuerologist this month and see if i can’t pin him down for an explanation and see if there is anyway to figure out what this is. I quit my general doc last month so it looks like i will be seeing my Nuero a little more often until i can get lucky and find a decent doc that i like, that is accepting new patients, that my insurance approves of, and on my side of town. Hopefully there may be some type of treatment that may help besides time and pills. 🙁
Happy New Year
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