I would like to introduce myself
AnonymousOctober 20, 2007 at 8:53 pm
My name is Stoney Pride. I was diagnosed with GBS on January 25, 2007. I was one month into my second semester of pharmacy school at Southwestern Oklahoma State University. I am 31, married and have a three year old daughter and a 15 month old son. Yes, my life was hectic before I came down with GBS.
A little background of my road travelled with GBS.
I woke up on a Tuesday morning with a strange tingling sensation in my feet. I quickly discounted it, because I had played in the snow for hours with my daughter the day before. The symptoms stayed the same for the rest of the day.
When I woke up on Wednesday morning, my feet were now numb and when I started to eat my breakfast, I realized that I had no sense of taste. I once again discounted the symptom because I had eaten pizza the night before and had burned my tongue.
Thursday morning I awoke at 4am with incredible muscle spasms in my back and I was now numb from the knees down and my hands were starting to tingle. My wife urged me to go to the ER, so not wanting to wake the kids I drove my self to the Weatherford ER. I told the PA all of my symptoms and was at first treated as if I was a “pill seeker.” Her conclusion was that all of my symptoms were stemming from my muscle spasm in my back and was given a perscription for a muscle relaxer and sent on my way, without checking a single reflex.
I filled the script on my way to class. I could not miss class because I had lab. I was in class from 9am until 5pm. My symptoms worsening throughout the day. When I staggered into my home, the look on my wife’s face told me something was really wrong. I explained that I was really fatigued and wanted to try to eat something. I sat down at the table, took a bite of food, chewed it up, but when I swallowed it when down my trachea instead of my esophagus. My mind immediately flashed back to the lecture I had the day before in Pathophysiology II, in which the Upper esophageal sphincter was described as voluntary skeletal muscle. It was right then that I realized that all of my other symptoms were affecting voluntary muscles as well.
We drove into the city for a second opinion on my condition. Literally within minutes I was diagnosed with GBS. I was admitted to ICU at Baptist Hospital, where I stayed for 2 weeks. The complete paralysis stopped just centimeters below my lungs. I prayed to God and told him that I was willing to fight, but I needed his help and asked for his guidance. I then looked over my shoulder and saw the answer to my prayer, the suction device. I staved off being put on a respirator by 0.1 gallons of lung capacity, mostly because I realized that since I couldn’t get my esophagus to open to eat, that if I gagged myself with a suction device that it would make me cough up the mucous that was collapsing my lower lungs. I put myself on an every 15 minute schedule off shoving the yonker down my throat to try to keep my lungs clear enough until the plasma exchange had a chance to work. I can remember the look on the nurse’s face when I asked for the yonker and described my plan. I knew that if I went on the respirator it would no longer be my fight and that I could be on it for quite a while. I cut my mouth and throat badly, but somehow I was able to stay off the respirator.
After 2 1/2 weeks at Baptist, I was transferred to Jim Thorpe Rehab. in Clinton. I was there for 3 weeks. When I left on March 2, 2007 I was able to walk short distances with a walker. By mid April I was walking with a caned, and by June I returned to school without the use of a cane! I made a 4.0 over the summer( I am sorry, I have to brag, lol).
I am still in school and will graduate in May 2010. I am very lucky to be as functional as I am, especially only 9 months out. But, as I have read on here, I one of those who look “strong and healthy”, but deal with a great amount of fatigue and most of all unrelenting pain. Most of which is in my back and my feet. From very early in my recovery I have been in a vicious cycle of pain and recovery. The more extreme the pain, the more noticable the recovery. Does this sound familiar to anyone else?
I am sorry for the overly long intro, just excited to talk with my fellow GBS’ers.
AnonymousOctober 20, 2007 at 9:39 pm
Welcome to the forum and the home for many of us who had GBS and still deal with its effects on a daily basis. It is nice to hear your story and learn that you are doing as well as you are. Your determination was fantastic and obviously has brought you far-to be able to go back to school and do so well so fast is remarkable. All of us know the residuals you speak of, whether fatigue or pain. Pain is not always associated with recovery and that it is in your case is certainly hopeful for it probably means a lot of healing in the nerves. I hope you continue to improve as well as you have started. In your situation it may seem hopeless to say be careful not to do too much as your life is quite full, but don’t forget to listen to your body when it needs rest and you need to lie down. Again, welcome and good luck. Jeff
AnonymousOctober 20, 2007 at 10:49 pm
This forum family is a source of knowledge and help you cannot find anywhere else. Today is my 1 year anniversary from the day I was put on the ventilator. I could not see a bag or anything because it had me paralized from my neck down in 48 hours. It hit me really similar to you but in my hands just hours before my feet one morning. The next day by noon I could ne raise my arms past my elbows. As you will find through your readings and studies because I know this Syndrome will almost become a obsession with you to be educated about. I can walk and do most things as before but there is a serious fatigue factor. I also have pain in my lower back and they say it is from trunk muscle being used for food while I was in the hospital. Then again there have been 4 other opinions about my pain , I’m going to try the least invasive first. I was in a CCU for 4 weeks then on the floor for a week while they got ready to transfer me to the Baptist Rehab which is the superior in my city.I stayed in the rehab for 4 weeks doing 2 -2 hour sessions a day . I walked out and continued outpatient rehab twice a week 2 hours each day , this lasted for 3 months and now I am still doing rehab 2 times a week but just 1 hour of PT.
It is very important to listen to your body for the sign of (it’s break time) because pushing too hard will or should I say can result in setbacks.
Ask any question in here that is puzzling you and chances are someone will respond with a answer or direction.
Also one more thing…… cut your food small and chew it well! I know from experiance with a piece of filet mignon stuck than sent me to the E.R. shorty after I returned home.
Again I say welcome to this Forum and sorry you need us but atleast you found us.
AnonymousOctober 21, 2007 at 1:27 am
Hi Stoney, Welcome to The Family. Ask as many questions as you have or just vent, we don’t mind-we know what you are feeling because we’ve been there ourselves. No need for apologies either, its nice to hear newbies’ stories, especially when they have a good ending:)
Do you take neurontin or lyrica for pain? Or some people use anti depressants also.
Congrats on the 4.0, that’s Very Impressive!:) My Dad is a retired “pill pusher”:D
AnonymousOctober 21, 2007 at 9:41 am
Thank you all for the warm greetings. To reply to Angel, I tried lyrica, but it made my vetrigo unbearable. It was alright until I tried to read, it made studying impossible for me. I also tried neurontin, I got absolutely nothing out of it. The only meds that seem to give me relief consist of my 80mg of oxycontin every 12 hours and diclofenac twice a day as well. As far as my antidepressants go, I eventually started taking zoloft. I also made me dizzy, but it got better as time went on. My muscle spasms got so bad in class a couple of weeks ago that I could barely keep my head steady enough to view the power point. After a frightful trip in to see the Doc., fearing a relapse, we come to the conclusion that I may be healing in my spinal tissue area and the inflamation may be the root of the problem. So he started my diclofenac and took me off the zolft, citing the possibility of it contributing to the spasms. So I am now on wellbutrin. The spasms are better, but the pain is still there. Anyone else, on wellbutrin or otherwise, have visual hallucinations in low light environments? It bothers me, but I am not too worried until they start talking to me! lol
AnonymousOctober 21, 2007 at 10:52 pm
Welcome to our family. Your family may want to read some of the posts to know what you are going through and how much better you are than some on this site.
TO answer your question – the first time I got GBS in 86 I had lots of pain and I recovered faster. I found that when I stopped my intake of vitamin C which was around 15-20 grams per day, the pain intensified – like I was hit by a truck. I only did that one day to get a 24 hour urine collection. I had a wholistic doctor who kept me out of the hospital. I found that adrenal extract along with the vitamin C helped turned the disease/syndrome around.
The second time I got GSB which was a year ago this month, I had much less pain but more paralysis. I stayed at home and used my 35 year knowledge of supplements to fight it off. I took MSM when my breathing got bad and that helped. I chewed my food 50 times and drank carbonated drinks to push the food down. I lived on the floor alone in the house. It was like survivor school and I was developing the curriculum! It took me four months to just stand for a second. So for your hypothesis – this time less pain and much longer recovery.
Perhaps your joining us will be another part to the GBS puzzle. Maybe you will be able to help us figure out this crazy syndrome. I do know that huge amounts of vitamin C slowed the progression down so I got it gradually. Since I had it twenty years ago, I knew what was coming. I just didn’t know how bad I would get it this time. Since vitamin C slows it down and keeps the pain away, perhaps that is a clue as to what causes GBS. YOu might want to try it for your pain. Use the bowel tolerance test……take one or two an hour until you get bowel intolerance – then cut back by a gram or two for the next day. Hey, what can it hurt?? Linus Pauling one two Nobel Prizes – Peace and Chemistry -and he swore by it!
WHat caused your GBS? YOu will be amazed at how many different ways you can get it – and none of them make sense. Mine was stress both times – even though it is not listed in the literature.
AnonymousOctober 22, 2007 at 5:48 am
Welcome to our GBS Family 🙂
I take Vicodin (hydrocordone) for the intense pain, and have been.. (3 years out). I Came down with GBS Sept 3. 2004. My neurologist still prescribes this for me every three months. My insurance has a 90 day prescription plan at a reduced rate for meds that are taken often. I get the Vic and the Neurontin under this plan. These two meds do it for me, big time.
Best of wishes for your continued recovery……………..
AnonymousOctober 22, 2007 at 9:35 pm
Thanks again for the warm welcome. To add another piece to the GBS puzzle, I am sure that you all are aware of the medical fields hypothesis of the connection to either a respiratory or gastrointestinal infection being present in the weeks prior to being diagnosed with GBS. I did have a light cold over Christmas break. However, as I laid in rehab, the news broke about the bad Peter Pan peanut butter. I had my wife check the cabinet and sure enough, my chunky peanut butter was among those recalled for possible contamination with salmonella. During my finals week, I had severe gastrointestinal disturbances, vomiting, stomach pain, and diarrhea. I attributed it to my history of ulcer and stress, but am quite sure that the exposure to the salmonella may have been a contributing factor in my case. By the way, I never had the jar tested. I had my wife throw it away when I was talking to her on the phone. My fear of my children contacting the salmonella outweighed my logical, scientific methodology while I laid in the hospital bed. In that same vein, does the fear of relapsing ever go away? I can hardly go a day without the fear of relapsing going through my mind in one way or another. I still have nightmares on a weekly basis of falling back into this disease’s grip.
AnonymousOctober 23, 2007 at 12:11 am
Metaphysically speaking..I think things happen to us for a reason. When we won’t slow down, our bodies slow us down. When I got GBS the first time in PA, I thought that the school I was teaching in was a sick building and was afraid to go back there so I retired after 15 years of teaching and moved to Florida. My second GBS came after teaching for 15 years in Florida!! I did not realize I had taught the same amount of time!! I retired early or they would have terminated me. They would not give me a seond year of leave unless I had a new illness!! Now how did this crazy syndrome know it was 15 years??? I got tired to people expecting me to recovery in a normal amount of time, so now I say what I have is like a cousin to POLIO. Otherwise they do not really know how bad this is. They figure if they haven’t heard about it, it can’t be That bad! What you have gone through would give anyone nightmares……this too shall pass. I wouldn’t dwell on it reoccuring because Thoughts are things…you don’t want to create it or give it power. Maybe you could get some placebos and give them the power to heal your body!!
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