GBS Success Story… It could have been worse!

    • Anonymous
      August 22, 2006 at 1:06 pm

      My story is a pretty simple one but of course long winded. I stayed positive through-out always telling myself that it could be worse, which I believe did contribute to my getting better so quickly and still helps today. I was a healthy person before this and did not have any sicknesses that I was aware of. I took multi-vitamins, flax, calcium, etc prior to getting GBS. I was an athlete that like to cycle and lifted weights 4 days a week. I love the outdoors hunting and fishing and was very caught off gaurd when I suddenly found myself with these problems litterally overnight. One more thing I would like to add is that I was afraid to go to sleep for a few weeks because it seemed that every time I woke up something was worse, but I have made it through some bad few weeks and am on my way to recovery now!

      I woke up on a Saturday morning and my hands were numb and my hamstrings hurt, I figured I just slept wrong because I fell asleep reading a book and my book was up around shoulder level. I kept shaking my hands and saying this was really weird that my hands were still asleep. I went down to my sisters house which is about an hour away, she was having a garage sale that I was going to help out with. I was walking around fine that day, helping carry bins around, normal strength and everything just the numb hands and sore hamstrings.

      On Sunday morning I woke up and my arms were numb from the elbows down and my feet were numb as was my bottom lip. I had a baptism to go to that day which I did as I was able to walk without issue. Later on that day every time I took a breath it felt like my body was hot and the breaths I was taking were an extremely cold temperature. The air around me (in the 90’s) felt so cold when breathing that it hurt to breath. I woke up in the middle of the night and my neck and back was in quite a lot of pain and I was having some difficulty breathing. I considered waking up my boyfriend to bring me to the emergency room but I didnt want to jump the gun so I told myself it it got worse I would wake him up.

      Monday morning I got up and my arms were numb, my legs were numb, my face was numb as well. I called my doctor expecting to go in, get a pill or something and go home. When I called my doctors office they told me I had to go into the emergency room right away which surprised me. I got up to get ready and kept tripping over myself.

      In the emergency room, I saw 5 doctors all who looked at me like I was speaking a foreign language to them as they all said the same things “thats strange”, “that doesnt sound right”, “somethings wrong I’m just not sure what”, “that does sound really odd”, etc. Finally one of them decided to call in a neurologist who said he could thing of a few things that could cause these symptoms such as MS, GBS, Viral Menengitis or a spinal cord injury up in the neck or brain stem. I told him that one of the other doctors told me that they thought I had Lou Gehrigs disease and he said that I shouldnt worry about that at that point.

      The Neurologist said he was going to admit me into the hospital because I couldnt even walk or hardly move my legs so they would keep me at least one night in the hospital while they figured this out. After being admitted they did many blood tests for things like Lyme, West Nile, Lupus, and about a hundred other things. Also they did a head and neck MRI, urinalysis and a spinal tap. The MRI came back ok ruling out MS and any type of neck or brain stem issues. Later that night the blood came back ruling out viral menengitis. Other tests came back that night ruling out several other things. The neurologist told me my symptoms fit GBS perfectly except I didnt have elevated proteins and I had all normal reflexes so he they would monitor me for the night and wait for some more results to come back in later (some would take 3 days to get back such as Lupus). Tuesday morning the doc came back in and said all test results so far showed everything was normal and he still thought it sounded like GBS except for some key things. He said the proteins may take a while to go up but he would not expect me to have normal reflexes so he was calling in another neurologist to get a 2nd opinion. Just before calling in the other neurologist he checked my reflexes again and they were all completely gone so he was more confident in his diagnosis. The other Neurologist came in and agreed with that diagnosis so they started me on IVIG that day. The following day I seemed weaker and the numbness had gotten worse, I could no longer move my toes. They did another spinal tap in me and the proteins were still normal range. I had 5 consecutive days of IVIG the last being Saturday and then on Sunday I got up and half my face was paralyzed including he inability to blink. On Monday my neurologist came in and saw I was getting worse so he wanted to transfer me to the Mayo Clinic which happened that day. He said that an EMG should be done at this point but would find out if they wanted to do that at Mayo or if they wanted to do it there… turns out Mayo wanted me right away and was going to do it themselves.

      They again ran many blood and urine test on me again at the Mayo Clinic and did another spinal tap. This spinal tap came back with very high levels of proteins so I started PLEX in hopes they could head it off before it progressed further. My blood tests came back with very high liver enzymes which they called a type of viral hepetitis. They did X-Rays of my chest and Ultrasound of all my organs to be sure all was good. I was IgG and IgM positive for the CMV virus and I had antibodies for Sjogren’s Disease. The only definate way to find out a positive diagnosis for Sjogrens is to do a lip biopsy which they did. The lip biopsy went bad and a few hours after getting it my lip got the size of a golf ball. A day later the doctor that did the biopsy came in and cut it back open and removed a blood clot and it started to go down. I was still able to swallow but with the right side of my face being paralyzed and the left side being so large and so painful I was unable to eat or drink for about a week. My mom was there and feed me liquids through a syringe 8ccs at a time.

      After my first PLEX treatment they realized I needed a central line put in because my veins kept blowing out. I continued to have problems breathing so I was put on oxygen which I only needed to stay on for a few days while they continued my PLEX treatments. PLEX treatments were done every other day because of how hard they are on the body (and of course I had problems with low calcium when doing the treatments but because my hold body was numb I didnt feel any of the tingling until it reached the corner of my eyes when they had to do calcium injections). After 10 days (5 PLEX and 5 off days) I started to stabilize… I was getting weaker and weaker up until that point with no feeling, and numbness everywhere in my body including stomach, buttox, etc. A couple of weeks after I stabilized then the paralysis in my face started to slowely go away and that took about two weeks before it was for the most part gone, I still need to make an extra attempt to close my right eye when I shower now but at least I am able to shower on my own!

      I was moved to inpatient rehab (OT, PT and RT) for a couple of weeks and was discharged. I was upgraded from walker to crutches during inpatient and am now at home and going through outpatient PT with followups with doctor and neuroglogist. I am hoping to return to work on Oct 2 but we will see how that goes. I can now walk about 200FT with crutches and use a wheelchair for any longer distances but things are definatly better than they were and I am just so happy to be at home again!

    • Anonymous
      August 22, 2006 at 1:17 pm

      Wow Doby you sure went through alot before getting your diagnosis. I am glad to hear that your on the road to recovery. Progress can be slow at times but as long as it’s progress with GBS that’s a good thing. Remember to rest when you need to.