My personal victory

    • Anonymous
      July 19, 2006 at 6:56 pm

      greetings everyone,

      this is my success story. I wrote it for a narrative paper for a college english class I was taking, so it may be a bit long

      [QUOTE]It was the morning of the 3rd of January 1989; I had not been feeling well for the last couple weeks. I was stationed at RAF Little Rissington, England. I had been making regular visits to the clinic at RAF Fairfield, which was about 20 minutes away, and the emergency room at RAF Upper Hayford hospital, about 40 minutes away, to see if anyone could find out what was wrong with me. On this day a co-worker drove me to the clinic; as I was walking in, my legs got suddenly weak and I fell to my knees. One of the Techs saw me drop and came running out to help my friend get me into the building. After getting my vitals taken and waiting just a few minutes longer, a doctor came in to see me, made a preliminary assessment of my condition, and then made a call to the hospital. Upon conferring over the phone with the internist he decided to transport me to the hospital for further studies.

      Arriving shortly after lunch, the internist met me in the E.R. They took my vitals again and had me moved to his office upstairs. He ran a few reaction/reflex tests on my feet and knees. With the result of those tests it was his judgment that I had contracted Guillian-Barré Syndrome, an illness that, at that time, was considered a piggyback virus. He told me that the only way to tell for sure if that is what I had was to perform a lumbar puncture. So, I was admitted and scheduled for the lumbar puncture at 1600 hours. It was now somewhere around 3 pm.

      After the procedure, I was lying flat on my back, as instructed, since according to everyone saying that it was necessary because if you sit up within seven hours of having a spinal tap, you can develop a massive headache. At about 5:30 my dinner arrived and I ended up having it eat it lying as parallel with the floor as possible, but on my side. About 7 pm the doctor came in with my supervisors. The doctor informed me that his initial diagnosis was correct and that they were transporting me to RAF Lakenheath, which is on the Eastern side of the country. It was then that I actually started getting scared; he I was, 19 years old, 3000 miles from home, and having my first hospital stay since I was born. The doctor explained the illness in more detail, telling me that in essence it stripped the insulation coating (myelin) from the nerves, basically causing them to short circuit the muscles causing paralysis. He also told me that it mainly attacks the voluntary muscles but has been known to affect the involuntary ones as well.

      I called home to let my parents know what was going on, and informed them that I would keep them notified of my condition. When I woke the next morning, I noticed that it was difficult to move my arms and grip the silverware, to eat breakfast. About a half hour after finishing breakfast I was transferred from the bed to a gurney and taken down and loaded into a waiting ambulance, for the 2-hour drive across England. It was about an hour or so into this drive when I heard the driver talking to the tech riding in the back with me, informing him that he had gotten lost, I chuckled hearing this. We arrived at the other hospital around 12:30-1:00 pm. I ended up being put in the ICU ward. I ward quite hungry and expressed this to one of the nurses, who informed me that lunch had already been served but that she would try and get me a tray. When I got my lunch I found that I could not grip the silverware so they retrieved a set of table service that had large foam tubes slipped over the handles, making them easier to grip. Once I finished lunch the neurologist came in and informed me that, in his opinion, and with my condition, he felt that he did not have the staff or equipment necessary to properly care for me and that he had made arrangements with New Addenbrookes Hospital in Cambridge to take care of me. So, once again, I was loaded up into an ambulance and back on the road.

      Finally getting settled in, after spending, what appeared to be, all day on the road. I called home again to let my parents know that there was a change in plans and that I was now in a “civilian” hospital. I found out that this place was a teaching hospital, and assumed that it was perhaps part of Cambridge University. My primary doctor turned out to be the head of the neurology department, but I was seen by others as well. I was immediately seen by the physical therapist, who performed range of motion exorcises to keep my joints and muscles from ceasing.

      I spent the next two weeks here, during that time my father traveled to England to be with me. I took it upon myself to ask for a wheel chair, since I still had use of my arms, I believe that may have helped keep me from a vent. I had some hydrotherapy sessions here, in a floatation pool and actually being able to move without the hindrance of gravity. I also took my first assisted steps since being admitted on the 3rd. Since I was recovering so well, they decided that I should return to Lakenheath, where I spent over a month. I was informed by one of the nurses about a woman, she had treated, with the same diagnosis as I, who had given up all hope and never did walk again. I continued to keep my faith and determination that I walk again, unassisted, before my birthday on January 30th. Physical therapy was difficult; having to learn to first crawl on my own, then walk with the aid of a walker and then a pair of forearm crutches. I spent my 20th birthday recovering there, going to physical and occupational therapy every day.

      Once I was able to walk with the aid of the crutches, they decided to send me back to Upper Hayford, so I could be closer to all my friends. My father returned home before I was transferred, feeling relieved that I was doing so well. Upon returning to Hayford, I was able to get weekend passes from the hospital to return to my base. Spending the next three weeks there, I was finally released to return to work, on half days, and continue going to physical therapy for the next six months.

      Since that time I have not had any reoccurrence or serious side effects of the illness.

    • Anonymous
      July 19, 2006 at 8:31 pm

      Welcome Bill and glad to hear that you are doing well now.


    • Anonymous
      July 19, 2006 at 10:59 pm

      thanks, I have been learning more about GBS than I knew just from reading posts on the forums.

      my main concern, especially seeing all that you have been diagnosed with, is it common for those with GBS and CIDP to develop more autoimmune disorders? If so what should I be on the look out for? what tests should I have my primary care doctor run?

      Late last year I finally started going to the local VA for regular visits, the doctor ran rheumatoid arthritis tests, because I have had knee and hip discomfort. The RA factor came back negative but my ESR was 60, which I have been told is quite high. To my knowledge the doctor did not order any other tests to find out why it was so high, and he is aware of my GBS.

    • Anonymous
      July 19, 2006 at 11:33 pm

      Hello Bill,

      Welcome to the forum! How horrible for you to be without family during the early stages of the gbs. Did they do plasmapharesis at all during your stay in hospital?

    • Anonymous
      July 19, 2006 at 11:41 pm

      Sorry Bill, one more question. The ESR test, is that the test that shows ‘infection’ somewhere in the body (never get all the names right). Been going to a Rheumatologist, and if the ESR test is the one Im thinking of, then mine was pretty high too. He had me do another one, and I get the results back on Friday, and I know that he will try and find out what is causing it if it comes back high again. I apparently have some kind of inflamation in my hip socket that causes me discomfort too, doc wanted to inject straight into it, and I said forget it, its not that bad that I need an injection! To get back onto the subject ….. what I was trying to say was that, if ESR is as above, then if I were you, I would want to get to the bottom of it, well at least thats the impression I got from the Rheumatologist.

    • Anonymous
      July 19, 2006 at 11:56 pm

      no I did not have plasma pharesis or IVIG, the lead neuro felt that my age could be a benifit, he would wait a bit to see if it would correct on its own.

      I did have a cousin that lived near by, like 30-45 min, they visited me before dad got there, that is where my father stayed.

      The ESR shows inflamation, from my understanding normal is in the single digits.