How many of you were….

    • August 29, 2006 at 7:41 pm

      severe cases….

      mild cases….

      and if you were a sever case, how long did it take for you to become severe?

      How did doctors Dx you?

      How long did it take for a Dx?

      What was the treatment?

      Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care?

      How long did it take for you to start getting better?

      And how long has it been since you were first diagnosed?

      Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it?

      Mild cases, same questions….

      I really like The thread about our stories. I have found this site very helpful and also comforting. It would be nice to see more stories posted in that thread for others to read and find hope in.

      GBS is something I would not wish upon my worst enemy. The fear alone is enough to drive you insane! I still plan on compiling the information I have learned (and continue to learn) and the stories I have read into a paper and submitting it somehow to help doctors learn some new things about this obviously misunderstood syndrome. As well as help others in our situation with knowledge and information.

      thank you for your help with this. I feel it is important to have this info to share with others.

      Lori

    • Anonymous
      August 29, 2006 at 9:07 pm

      My 16 year old very athletic son had a mild case of GBS. His symptoms started on June 13. He was losing control of his legs. Actually we found out later it was hip flexors, quads and hamstrings. By June 19th he was unable to walk and admitted to the hospital. By the evening of June 20th he was diagnosed with GBS and given one round of IVIG. Tests included EMG, MRI, EKG, CAT scan, etc. By this time his eyelids would not close, his jaw was numb and he could not raise both arms at once. His blood pressure was up but controlled with meds. Reflexes were completely gone.

      The second round of IVIG was given a day later – and he came home with a walker on June 24 after they did a spinal tap to find protein and confirm GBS. At this point about 20-30 shaky steps with the walker wore him out.

      He started improving almost immediately – we did PT at home for a week and then started outpatient PT at a local (smaller) hospital. I believe being at home did wonders for him, as the hospital where he was admitted was two hours away from home. He flew through PT and after about a month his blood pressure suddenly (in a span of about 24 hours) returned to normal. He actually passed out a couple of times before we convinced the doctors to discontinue the BP meds. In his 6 week follow up visit his reflexes had returned to full strength. The neurologist was very surprised at all he could do – and cleared him for all activities.

      Fast forward to the end of August…. He is now in the middle of extended physical therapy, also known as acceleration training. It includes treadmill work, weightlifting and jumping. He is able to all of his daily activities, attend school, and even do parts of the cross country workout. He is playing fall baseball, and although not 100% yet, he is playing very well. He looks forward to basketball at full strength in November. It looks as if that is a very realistic goal. The last two weeks his vertical jump increased nearly FOUR inches.

      We all realize how lucky he was – to have a mild case and such a quick recovery. He never had pain, tingling, etc. He kept an exceptional attitude throughout the whole ordeal…. he seemed to help the rest of us through it!

      Best wishes to all of you who have suffered through this horrible syndrome.

    • Anonymous
      August 30, 2006 at 11:04 am

      [B]Mild or Severe case?[/B]

      I guess I would classify mine as a severe case because I ended up hospitalized but it could be called a mild case because I was able to recover rather rapidly, although the pain I had was severe and uncontrollable.

      I had a Hep A/B booster shot mid Oct 05 and 5 days later started having tingling sensations in my arms/legs which I at first attributed to my extremities going to sleep due to flying on airplane/sitting in a conference in uncomfortable chairs/sleeping in hotel bed/etc. After of week of this I returned home only to wake up the next morning with extreme pain in arms in legs and back. Long story short…5 ER visits, 3 doctor’s appointments and 2 hospital admittances later I was finally referred to a nuerologist. On 5 Dec I was admitted barely able to stand by myself and only able to shuffle about 5-10 feet with assistance, difficulty breathing, and still in excruciating pain which was now in arms/legs, back, neck, and face, and I had no reflexes anywhere. Took me 6 weeks to get to that point and every day the pain kept increasing and moving to new regions of my body.

      [B]How did doctors Dx you?[/B]

      1 CAT scan, 2 MRIs, 2 spinal taps, nerve conduction test, reflex test, blood work for everything under the sun…

      [B]How long did it take for a Dx? [/B]

      6 weeks, or 1 day at the nuerologist depending on your point of view

      [B]What was the treatment?[/B]

      a full 5 day IVIg treament given non-stop in 2 days

      [B]Did any of you have to self treat[/B] [B]because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care?[/B]

      Don’t remember because I was delerious with pain and medicated to the tips of my hair to keep it bearable

      [B]How long did it take for you to start getting better?[/B]

      about 48 hours after IVIg treatment I could feel a difference in my arms and legs, 3 days later I “walked” out of hospital with walker

      [B]And how long has it been since you were first diagnosed?[/B]

      8 months, 3 weeks, 4 days

      [B]Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it?[/B]

      Tingling sensations in my hands and feet and arms and legs similar to having them be “asleep”…belive due to Hep A/B booster shot as I had no other contributing factors like illnesses or infections or surgeries

    • August 30, 2006 at 11:36 am

      thank you so much for your help with this thread. It is so amazing the differences between people with this. Dr’s have a set of rules they follow regarding illnesses and if you dont follow them then they blow you off. I want to change that somehow.

    • Anonymous
      August 30, 2006 at 5:15 pm

      i had a severe case. it took a day to be completely bedridden. it started in the morning and spread up my body like wild fire. by the afternoon of the next day i needed a trach as i was in respitory distress.
      i 1st went to a local hosp cause i thought i hurt my feet exercising. they said i had arthritis.:rolleyes: later that night i went to a major hospital in boston and they knew right away what i had.
      i had tranfusions. i was in the hospital for 2wks and then a rehab for 5 mths. sent home w/ PT & OT then 3 mths later outpatient pt & ot.
      it started in my feet. i thought i had MS. i was online searching for info and there were no answers i could find.
      i came down w/ it on january 2004.
      i still deal w/ fatigue daily. i get really bad muscle cramps. quinine pills help but i still get cramps.

    • Anonymous
      August 30, 2006 at 5:47 pm

      [B]and if you were a sever case, how long did it take for you to become severe?

      a: I consider mine to be mild, as I was only hosp for 2 weeks, and no respirator.

      How did doctors Dx you? spinal tap, EMG, MRI, CT scan, tons of bloodwork.

      How long did it take for a Dx? 5 days, as i was misdiagnosed at a small hospital with “vertigo”. needless to say, it was a too busy, young ER physician who totally ignored my major complaint which was numbness tingling in hands and feet. (this was early on, 2nd day)

      What was the treatment? 5 plasmapheresis treatments.

      Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care?

      NO, I knew something was wrong with my nerves from my medical training. I had a drooping eye double vision, and couldnt walk by the day I was admitted. I consider my case mild b/c I never weakened in my distal muscles (like calves, lower arms) just in the shoulders, hips, and a touch on face.

      How long did it take for you to start getting better? after 1 week of hospitalization, i started turning around.

      And how long has it been since you were first diagnosed? almost seven months.

      Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it?[/B] I had 2 vaccines, and a bad cold. first symptoms were tingling/numb in both hands.

    • Anonymous
      August 31, 2006 at 10:33 am

      [B]Mild or Severe case?[/B]

      I had a very mild case of GBS. I flew back from visiting family on a Sunday morning, and spent the entire day (11 am until midnight) working on a kitchen renovation project (flooring) down on my hands and knees. I had taken the following week off of work to finish the project and relax, so I got up at 5am Monday morning and went for a 5 mile run, during which my feet were tingling. I thought nothing of it, and then worked from 6am straight through until just after midnight, finishing the flooring project, down on hands and knees. My feet were tingling, and I was struggling to utilize my lower legs, but I thought it was from all the time working on the floor. I went to bed by 1am, after having completed the kitchen project, cleaned up, dragged stove, refridgerator, tables, etc. back into place, and dragged myself around the house, and dragged the dog (and my feet) around the neighborhood for a bedtime walk.

      By three in the morning, my feet were killing me, and I knew there would be no sleep that day. As a business exec, I still have work to do even on vacation, so I drove into the office (very, very carefully) and arrived by 4am, and started working on documents so that I could leave later and catch up on sleep. The general staff started coming in around 8 am, and by that time, my legs were jello. They convinced me to allow them to take me to the ER. at 10 am Monday morning.

      Luckily, I had left my 16 month old with my family for the week before flying back home to NC, and my wife (a physiatrist (rehab doctor)) had just left for a week’s vacation in a remote part of Texas where she was generally unreachable. While many people get a lot of support from family, I was relieved that they were not around to be scared of what I was going through until after I had reached the worst of it (which was very mild compared to many). For support, however, my company was awesome … I had visitors from the company at breakfast and at dinnertime each day, and calls from our CEO everyday. While he was out of the country, he even called the president of the hospital and requested that the president of the hospital stop by my room to do a personal check on me. [I](When you are struggling, you may often be surprised at how much people care when you least expect it … God works in many ways)[/I]. 😀

      [B]How did doctors Dx you? [/B]

      Sitting in the ER, [U]the attending asked me about my symptoms [/U](I still thought I was just struggling from tired muscles down on hands and knees), and called for a neuro consult. I asked the guy his best guestimate, and he suggested that, while it was a long-shot, he believed I had GBS (which I couldnt even pronounce at the time) based on my presentation. [U]The Neuro came in, and within 5 minutes, concurred their “working Dx”[/U] and admitted me by 11am.

      [B]How long did it take for a Dx?[/B]

      [U][I]Working Dx within one hour [/I][/U]… [U]final diagnosis took a few days[/U]. [COLOR=”Blue”]I had previously shattered C4 and C5 in my neck, and have a great deal of instrumentation in my neck, so the doctors wanted to rule out any possibility of issues with the fusions and spinal cord in the cervical area.[/COLOR] I already had nerve damage from the cervical accident, so the doctors were a little cautious of rendering a final diagnosis early. After CAT, MRI, 2LP’s, EMG, EKG, X-rays, urine collections, multiple blood tests, etc., they decided on a final diagnosis of GBS (even though my protein was elevated, it was just under the “threshold” that they were expecting with GBS).

      [B]What was the treatment?[/B]

      I[COLOR=”Red”] was sent home after a week in the hospital without any treatment[/COLOR], but then the hospital called and had me come back each day for [COLOR=”SeaGreen”][B]5 IVIG treatments [/B][/COLOR]over the course of a week. Unlike many others, I was not on any pain medication. My biggest issue was difficulty from the LP’s … be [B][COLOR=”Red”][U][I]careful of going into a teaching hospital in July[/I][/U][/COLOR][/B]. They had newly “promoted” residents do the LP’s, each one lasting over an hour from needle in to needle out, with lots of pain and issues (blood in the spinal fluid, etc.) Apparently they poked a lot of holes, because I ended up with an enormous (debilitating) spinal headache that required a blood patch, and then have deep low back pain from the scarring (they did secondary MRI’s to view the scarring) from the LP’s … the pain is getting better, but it has now been present for the 6 weeks since my LP’s were performed.

      [B]How long did it take for you to start getting better?[/B]

      I started getting better about the time I left the hospital, before the IVIG treatments (probably 5 days after onset) … although [U]determining actual time of starting to get better is difficult[/U], since any improvements on a day-to-day basis are extremely limited.

      I have not been back to the Neuro since, but have been transferred in care to my wife’s medical clinic partner, another rehab doctor. I started with a cane, learned to walk without it, have been floppy footed since, until being prescribed an AFO that I just started with yesterday. Wish I had the AFO (or two of them) immediately coming out of the hospital, if nothing else than to help keep my feet correctly positioned at night. Sleeping has become horrible, due to leg cramps, burning sensations, and back pain. Oh, also, instead of Zostrix, the rehab doc had me try something called Bio-Freeze — same effect of Zostrix, except cold treatment rather than heat treatment. It has been helpful over small stretches of time (30-45 minutes) when my legs really flare up.

      Finally, and I wish I had learned about this earlier (I just learned about this yesterday through this forum and wonderful group of people), there is a fatigue factor (not only muscular, but in overall energy level) that has been very frustrating to me. I knew it could not be entirely due to my sleep difficulties, and at least feel better knowing that it is a fairly common effect of GBS to have overall energy fatigue following the disease.

      [B][COLOR=”Purple”]On a side note, if you are new to GBS (as i still am), this group has an amazing amount of information and knowledge, and I highly recommend registering so as to receive the Layperson’s guide to the disease.[/COLOR][/B] Throughout my hospital stay and recovery to date (even having a physiatrist wife familiar with the disease), [U][COLOR=”purple”]I have learned that doctors often forget that non-medical people do not have all the details of expectations[/COLOR][/U] … [COLOR=”Blue”][B]I learned more reading the Layperson’s guide myself last night than I did either in the hospital, or in the 6 weeks following where I have the opportunity to ask my own personal physiatrist questions. (By the way, the offer still stands to any who would like to ask my wife questions — she is very amenable to offering her thoughts from a rehab doctor’s perspective for all here).[/B][/COLOR]

      [B]And how long has it been since you were first diagnosed?[/B]

      6 weeks

      [B]Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it?[/B]

      [U][I]Tingling sensations in my feet[/I][/U]. I really have no idea what started the onset. I dont recall being sick (at all) in the previous month. And, while I was cutting laminate flooring for two days straight, I don’t think the laminate flooring has any chemicals in it, especially none known to be dangerous or problematic.
      😮

    • August 31, 2006 at 6:58 pm

      Thanks Doug for your story. This forum has been so incredibly helpful to me and my education and has helped me thru the past 7-8 weeks. I have learned that GBS is so misunderstood by the general public and by the medical community.

      Thanks again and good wishes on a continued recovery.
      Lori

    • Anonymous
      September 1, 2006 at 2:18 am

      Hi Lori
      you are so right, this disease is unbelievably misunderstood and misdiagnosed! I went twice to the hospital, one doctor and one urgent care clinic in addition to two neurologists. I got a second opinion because the first neurologist suggested “arthritis”!!! I just didn’t buy it.
      My symptoms started the same night that I recieved the vaccine, with tingling and stabbing pains in my legs. Unlike many I never lost my reflexes however. The docs wanted to match my symptoms to a very small minded preconceived notion that all GBS cases are identical, which they clearly are not. The first neurologist actually laughed at me, stating that I absolutely did not have GBS because my reflexes were still intact, yet he refused to test me for it. I think he was afraid he would be proved wrong. I was met with great confusion by the medical community. I was shocked at how little they knew of GBS. The original doctor who gave me the vaccine was offended at the suggestion that I contracted GBS from her shot! She dismissed me altogether. I am still annoyed at the ignorance and hope that in time it will be understood better in order to help alleviate the stress and pain that many suffer due to it.

    • Anonymous
      September 3, 2006 at 9:35 pm

      Mild or severe –

      you choose.

      and if you were a severe case, how long did it take for you to become severe?

      Fell down 6 days after start of symptoms

      How did doctors Dx you?

      Firstly, GP took a look at me and guessed. Secondly, in hospital, lumbar puncture to confirm the diagnosis

      How long did it take for a Dx?

      About 1 hour by GP and then a day for an official diagnosis

      What was the treatment?
      IVIG followed by PP

      Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care?

      No

      How long did it take for you to start getting better?

      About 5 weeks

      And how long has it been since you were first diagnosed?

      13 1/2 years

      Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it?

      Strange pins and needles in my fingers. Thighs got weak and then I hit the floor

    • September 3, 2006 at 10:01 pm

      Thanks for your story Anne.

      I want to somehow make the medical world understand GBS and help people get the immediate attention they need. The stories of being blown off kill me…dealt with it personally. Everyone’s input here is greatly appreciated and will be very helpful to others. I hope I can pull all of hte information I have learned into a paper and get it in front of doctors somehow.

      Lori

    • Anonymous
      September 7, 2006 at 8:01 pm

      Hi Lori,

      I had severe asthma and copd and a highly stressful job.
      Went to the hospital in November 1996 after a six-hour corporate meeting and never went back to work again (I had been working for 39 years and received generous corporate disability and social security payments.) Two years later in December 1998 I got sick with what I thought was a cold. Had a real hard time breathing and called 911. I was totally paralyzed by the time I reached the hospital 25 blocks away.

      Was diagnosed with a spinal tap.

      Oxford, my insurance company, would not pay for ivig or pp and my lungs were like swiss cheese. Doctors started me on massive doses of prednisone to get my lungs in better shape. Got some movement back above the waist but nothing at all below the waist. Was transferred to nursing home/rehab center (with emphasis on nursing home) in February 1999, confined to a wheelchair, receiving occupational theory. My daughter was upset that I was not getting physical therapy and called a meeting with the nursing home department heads in September 1999. (I had had a bowel resection in August 1999 because the muscles and nerves in that area had totally stopped doing their job and I had diarrea for months.)

      We were told by the head of pt/ot that she had unilaterialy cut off pt because “she will never walk again” without telling me, my doctors, my family. Doctors overruled her and demanded that best pt in the house be assigned to me.

      Starting pt was horrific since my leg muscles had atrophied and I was terrified of falling. It took 3 physical therapists to help me stand for for the first time in November 1999. Had several bouts of pneumonia in 1999 and 2000, COBRA ended, and Medicare would not pick up nursing home costs after the first year. I had to take $170,000 from my 401K to pay nursing home costs.

      To finish up, I went from wheelchair to one walker to another walker to a cane. It took a while to find a landlord who would rent to someone disabled but I found a great apartment in midtown Manhattan and left the nursing home on December 14 2000.

      Fell a lot last year and have had two surgeries to correct problems after surgery in 2004 to correct clots in both legs.

      Have changed doctors and hospital to NYU Medical Center and to Rusk Institute for continued pt.

      I get around well now though my breathing is still a problem and have gone back to school.

      I am totally independent with an exception of a four-hour-a-week cleaning woman. I consider myself a very fortunate woman.

      Regards,
      Marge

    • Anonymous
      September 7, 2006 at 8:36 pm

      Hi Lori: I guess I had a moderate case as no respirator. I was travelling home from teaching in California to Denver on the train which takes about 36hours. I was fine when I got on the first train but had to transfer in LA. As everybody ran to catch the train there I discovered I couldn’t walk fast. My legs felt like lead. I had no tingling, no numbness, just a heaviness in the legs. Within two days I was completely paralzyed below the waist. I went to my local Kaiser clinic where the primary care doc diagnosed me in five minutes and sent me to the emergency room at the hospital. In the hospital it took the docs three days to decide I had GBS and no MS and started the treatment of IVIG then for three days. They told me it didn’t work and the disease continued to progress for another three days until I could not move my body at all. They were going to do another round of IVIG but decided to send me to Rehab instead, where I stayed for 4 weeks, walking out with a walker. I can walk today with a cane, but still have much pain and fatigue. So my first symptoms were actually the paralysis itself-the pain came later in the hospital. It is a life changing disease and I have learned much from it but it is horrible to experience. Best to you and everyone on the forum, Jeff

    • September 7, 2006 at 11:33 pm

      [QUOTE=marguerite] (I had had a bowel resection in August 1999 because the muscles and nerves in that area had totally stopped doing their job and I had diarrea for months.)

      [/QUOTE]
      Hi Marge

      I have had problems with this as well. I told the dr I saw that it felt as if my stomach and digestive system were numb and weak. She didnt take that into consideration or seem worried. I thought it was stress over all I was going thru and dealt with it. It has gotten better, but I swear I can “feel” when it gets weird from my stomach on down. Nice to learn I am actually experiencing something “normal”.

      I want you to know I am very proud of your accomplishments! I am so glad you are still independent!

      Everyone here has done a wonderful job getting thru this. I am really proud of the strength everyone has shown in the ugly face of fear that comes with this. And thank you so much to all of those who have helped care for those of us who have gone thru or are going thru this.

    • September 7, 2006 at 11:40 pm

      Hi Jeff

      I was never paralyzed myself, but definitely remember when my legs got heavy! It was such an effort to walk so I learned quickly to do a half walk-half shuffle so I didnt have to use my legs too much (and watch my feet since i couldnt be sure they were actually doing what I wanted them to). It seemed I had more pain on my right side but more weakness on my right. I was so afraid at one point to even try moving my legs or feet if I was laying down. I had this overwhelming feeling that they wouldnt move if I tried to do it. Then that feeling would freak me out so I would have to move them just to reassure myself. It was awful! Then feeling as if I could take a very deep deep breath and my lungs would never fill up or the feeling that I wouldnt be able to take a deep breath even if I wanted to. I am still trying to get over the intense fear I went thru. I may look into that counseling the neuro suggested just to help me let go of that part of my ordeal.

    • Anonymous
      September 7, 2006 at 11:46 pm

      Lori – I am the Mom of a GBS survivor, it is her story I will report for you

      severe cases….

      mild cases….

      and if you were a sever case, how long did it take for you to become severe?
      Brandy (14 at the time) woke up Wednesday morning with a terrific headache and was vomiting. I took her to the doctors that evening, diagnosed with migraine. Treated accordingly – by Saturday her legs felt like they were 200 pounds and she was very latargic, this time we went to the hospital. She was diagnosed with dehydration and an upper respitory. She was given two bags of IV fluid and medication. As we were to be leaving for England on Monday we asked if our plans should be changed. We were told that within three days she wuld be “right as rain.” She improved slightly.
      How did doctors Dx you?
      Upon landing in England – Brandy collapsed – unable to get up. We again went to a doctor who in turn transferred us to a local hospital. 5 Doctors later, an EKG and a CAT scan later – GBS was now the diagnoisis. A lumbar puncture performed the following morning confirmed GBS.
      How long did it take for a Dx?

      What was the treatment?
      IVIG was started. 5 day treament, antibiotics (suspected Lymes disease) and physical therapy. Remained in hospital a total of 7 days- released and treated out patient, EMG performed – 5 days later the bottom fell out. Double vision, increased BP, quick moving paralysis. Within 12 hours breathing was affected. Brandy had to be transported to a bigger hospital – in London. Upon arrival there, confirmed diagnosis (lumber puncture) and had to be placed on a ventilator, completely paralysed.
      Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care?

      How long did it take for you to start getting better? 6 weeks after onset we finally flew home, Brandy still wheel chair bound but alive and on the road to recovery.

      And how long has it been since you were first diagnosed?
      08/03/99 7 years 1 month and 4 days
      Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it?
      Headache, vomiting and pins and needles. Excruciating back pain 1 week after symptons began.

      Mild cases, same questions….
      Brandy has had a remarkable recovery in spite of the few remaining residuals (Raynauds, PTSD, fatigue, Panic Attacks and allergies to a whole list of antibiotics)
      Brandy started High school in a wheel chair and graduated Validictorian. She returned to all of her activities within 1 year of on set including toe ballet. Today, she is a senior at MSU and is in the MSU marching band (color guard). GBS changed our lives but daily we are thankful for her recovery. She is my shinning star and I am extremely proud of her bravery and all of her accomplishments.

    • September 7, 2006 at 11:52 pm

      Oh Maggie what a wonderful outcome! I am so glad she has come so far and done so well. Thank you for your story.

      *Hug*
      Lori

    • Anonymous
      September 8, 2006 at 5:47 am

      Lori,

      We’ve all became Brandy’s aunt…you’ve never seen such a proud family as she mastered every step.

      Have you read ‘NO LAUGHING MATTER’ by Joseph Heller, the author of Catch22? It describes his severe case of GBS and gave me incredible incentive. I think it is available at Barnes & Noble and/or Amazon.

      Regards,
      Marge

    • Anonymous
      September 8, 2006 at 4:44 pm

      I was a mild case and I was diagnosed a long time after I had got it yet they treated me with the same treatment that they do for GBS before they came right out and told me that I had GBS. Actually the medical doctors refused to believe I had it at all and whenever I said I had it they would say who told you that you have GBS and I would tell them that it was the neurologists that told me. So while in hospital I was at war between two sets of doctors one that said we can’t find anything wrong with you to explain what is going on. While the neurologists said that I had GBS, aand that I needed to get some physsio and treatment to be able to start recovering and that the only cure was time. It was at this time while all of this was going on that I found this web site. The doctors who didn’t know what was going on thought that if they put me on prednisone that it would cure me. It did nothing for me and so after being on prednisone for 2 and a half months at a dose of 60 milligrams they finally took me off. I developped temporary diabetes from it and a beautiful moon face toi go along with it. The neurologists diagnosed me by doing the nerve conduction studies that showed that I had nerve damage and also the way that things presented in the physical exam. At first they thought I had made all this up in my head and released me when I first presented symptoms as I had been on lithium for bi-polor and my lithium levels skyrocketed and I began seeing and hearing things that weren’t there, though at the exact same time I had lost feeling to my legs from my knees down on both legs. After two days in emerge and two on the ward they still didn’t figure out what was causing the legs to be paralysed but thought that it was psychiatric. So they released me. My psychiatrist got me in the psychiatric hospital about 2 days later and He told me straight to my face that what was going on was not psychiatric and got me to see the neurologist the next week when she did her time at the hospital there. After seeing her she got me readdmitted to the same hospital the next day and was astounded that they had even let me go without doing any tests. She immediatly doing treatment and it was IVIG and they explained that there were two treatments that were out there but they thought IVIG would be the best course for me. This stopped the progress of the paralysis and made it so that only my legs were affected and parts of my hand and a little patches all over my body but eventually that went away, thank goodness. I was happy as I am smoker and I was grateful plus I also do alot of painting and drawing and artwork and I am gratful that I had a mild case. I got GBSS on April 3 2005 and it took a long time for me to get better, I started to get better and then circumstances came in that halted everything and set me back to square one. I still can’t feel my feet or my ankles or around that area but at least it is lower than where it was. It used to be right up to my knees. I have to wear AFO’s because of foot drop which happened immediatly after I got GBS. I am working hard just to walk and that I am doing that best I can. Tthe first symtoms that I recall haaving is the inablility to feel my legs it was like they were pins and needles and that they just wouldn’t go away and then it just went numb. I think what started it was possibly the flu that I had just had. But there are so many factors that could of caused it I can’t know for sure.

      Sonja

    • Anonymous
      September 10, 2006 at 4:17 pm

      I had a severe case – Miller Fisher variant.

      How long did it take for you to become severe? –Woke up on a Tuesday morning not being able to get my eyes to focus. By evening was distinctly seeing double, my sense of balance was off and had to hold on to the wall to walk. Woke up the next morning unable to open my eyes – absolutely no balance – went to eye dr first who referred me to ER, was admitted – no longer able to walk or raise my right arm, speech severely slurred. Diagnosed with GBS on Friday and admitted to neuro-ICU. Completely paralyzed (except for being able to wiggle toes) and on respirator by that Sunday.

      How did doctors Dx you? Many tests, but in the end it was a spinal tap.

      How long did it take for a Dx? I was lucky – two days.

      What was the treatment? First plasma fleuresis, then a month into my being completely paralyzed they gave me a round of IvIG.

      Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care? N/A

      How long did it take for you to start getting better? I was taken off the vent after two months, and things started coming back quickly after that. I was in the ICU for a few days before being switched to a regular room. Then, a week later was transferred to rehab hospital (even though I still couldn’t swallow and was being fed through peg tube). After three weeks in rehab I recovered to being able to swallow, move arms and legs, open/close eyes at will, and walk while holdiong onto something. I was discharged just after three weeks. I continued out patient rehab for another year.

      And how long has it been since you were first diagnosed? This Oct 5 will mark 13 years. I consider myself to be fully recovered. Only lasting sympoms I have are: numb hands, no reflexes, eyes droop sometimes when I get too tired, and my energy level never was what it was before. But, none of these interfere with my everyday life.

      Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it? Already answered my first symptoms, but my trigger was a mild case of the stomache flu I had a week before onset.

    • Anonymous
      September 11, 2006 at 12:34 am

      I was totally paralyzed. Mine happened over 2 days. I was diagnosed immediately by my local doctor. He then called a neurologist who saw me immediately and confirmed the diagnosis and put me in the hospital stat. I was treated with IVIG treatments and plasmapharesis. I was about 3 weeks before I started to get better but it was over 100 days before I could leave the hospital using a walker and AFOs. I was diagnosed in Dec. 2004 and am still dealing with fatigue, tingling in feet, no reflexes in ankles, and on/off pain in legs. I can walk on my own though. I cannot run or jump. My first symptoms were flulike, diarrhea, achy legs, metallic tasting, tingling in feet and hands, then barely could walk, couldn’t stand.

      Caroline

    • Anonymous
      September 12, 2006 at 3:29 am

      I would class mine as severe d7ue to the rapid ionset and needing to be ventilated.

      and if you were a sever case, how long did it take for you to become severe?
      From first symptom was unable to walk within 24hrs, ventilated and in a coma within 48.
      How did doctors Dx you?
      Dr at local A&E didnt believe me but referred me to neurologist in next town the next day. He suggested GBSS within 5 mins of seeing me, confirmed by LP although results took a week to come through by which time i had been treated with Intragram

      How long did it take for a Dx? 5 min s of seeing neurologist, 24 ghrs from 1st symptom

      What was the treatment?
      5 days of Intragram, induced coma, ventilated

      Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care? NO

      How long did it take for you to start getting better? After the first week i began to get use back gradually. First head, then able to wiggle big toe. was able to move something new each day. To the point where i stood 4 weeks after onset, walked with a walker the next day and was walking unaided by 6 weeks. I only required 1 week of physio and came home 7 weeks after Dx

      And how long has it been since you were first diagnosed? 7 1/2 weeks

      Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it? Unable to focus eyes, tingling in hands and unusuaal speech which was due to palate being affected. Double vision, numb feet and spreading paralysis in hands. Oncee i had breathing difficulty i blacked out but know i was affected 99% of my body including being unabe to open my eyes. I had the flu for the 2 weeks prior to onset and believe this is what started it.

    • September 12, 2006 at 8:08 pm

      Thank you for posting. Each story I read gives me more insight into GBS and how it can affect people so differently yet so similarily. Everyone who has posted has been a huge help, I have learned new things and have also been surprised to read about something I have experienced but thought it was not related….and found it is!

      HUGE HUGS!!
      Lori