My first post.

    • Anonymous
      July 24, 2010 at 12:47 pm

      Hi I’m Mark and I’ve been out of inpatient rehab for 15 days and here’s my story.

      On Tuesday June 15th my feet became strangely numb and my shoulders severly painful. I could ony sleep a few hours at a time the night before. I still went to work and every thing. On Wednesday I could hardly walk, I still went to work and hobbled around. I called my internist and asked if this could be caused by the cough medicine she precribed me the week before for bronchitis. She only told me to stop taking it. On Thursday I called in sick and made an appointment with my internist, I was really weak and couldn’t get out of chairs without using my arms. She saw how I was struggling and tried to get me an immediate appointment with two local neurologists, but they were busy and I was sent to the emergency room at a local hospital. While I was there I was very lucky to see a neurologist with at least two decades of experience with GBS. He quicky diagnosed me with just physical tests to see the strength of my arms and legs and the extent of my ability to feel. He didn’t need any other tests.

      I was transferred to Montefiori medical center ICU in the Bronx which was much more on the ball. On Friday my breathing began to fail and I was intubated for 36 hours. Afterwards I received IVIG and my body started to respond faster than my doctor expected. I was ready to transfer to the Burke rehab center in White Plains, NY after 6 days at Montefiori.

      I spent two weeks at Burke as an inpatient. I was the only GBS patient, but they were familiar with the syndrome and occasionally had GBS patients. I am in outpatient rehab there and will continue as needed. My neurologist said I should be back at work the first week of September.

      Are there different levels of GBS? Did I just have a weaker strain?

      Thank you for reading my long winded post. It just felt good to tell my story to people that understand.


    • July 24, 2010 at 12:57 pm

      Hi Mark

      Welcome! So glad that you are recovering so quickly.

      There are different levels of being affected. Some here went ‘locked-in’ for a while. You and I had a milder case. My middle and hands were severely affected as well as balance.

      I can walk much better andd am battling away at the rest of the residuals.

      If you would like to talk please contact me through private messages.

      Best wishes

    • Anonymous
      July 24, 2010 at 1:42 pm

      Mark –

      Welcome! This is a wonderful place to find people who understand, who are full of good information and support – and mostly of love. I have recieved far more than I have given, and it is my hope and prayer that you will find the forum as helpful as I have.

      From wondering if anyone else gets ice cold feet to having people assure me that spontanous tears for no reason are okay – at a time when everything is abnormal it is wonderful to discover you are indeed normal. I wish we could all get together in a big room and meet each other face to face – but oh, my goodness, what a collection we would be! Some of us still in wheelchairs – some with walkers – some canes, and some like me who have graduated from the cane to a funny gait like I am walking on marbles. . . .

      We all somehow survive. I was blessed with GBS as a Christmas present – wow, how fun. ๐Ÿ™‚ But, after 2 months in the hospital and working through the struggle to dress myself, go pottie by myself, and finally walk a few steps with a walker I got to come home, too. Now everyone thinks I must be fine, because I only go out when I feel good and I lie when they ask me how I’m doing. Bright smiles and “just fines” are what they want to hear so I give them what they want. The only person who really knows how I am doing is beloved hubby, who still rubs my feet when they are cold, comforts me when I wake up from horrible nightmares (side effect of my meds) and understands I still need to nap. I hope you have someone who will be supportive for you, too.

      But the folks on this forum are supportive and either we are all nuts, or we keep ourselves from feeling like we’re not nuts – whatever – this is a wonderful place to be.

      Take care, make sure you get plenty of rest, and welcome! ๐Ÿ™‚

    • Anonymous
      July 24, 2010 at 7:39 pm


      I used to spontaniously cry during my first two weeks. It made watching sad movies interesting. As for cold feet, I get hot feet (even though others cannot feel the heat) and have to take off my shoes and socks, even at other peoples houses.

      My wife is being supportive, though she would like me to change a few things. I like to rest on the bed, there I feel completely rested. She would like me to sit on the couch so I don’t sleep in the middle of the day. She would also like me not to take Oxycodone ( I take a 12 hour time released Oxy plus Neurontin(Gabapentin)). I need them for neuropathic pain in my left sholderblade.


    • Anonymous
      July 24, 2010 at 8:02 pm

      Hi Mark and Welcome!
      I developed foot drop, which they associated with a spinal injury. I have had 4 spinal fusions from a horse training accident 5 years ago, and have been on the same meds since then. I developed foot drop in Feb., and that was associated with what they thought was more residual from my spinal cord injury. I was dx towards the end of March with what they thought was GBS, turned out to be progressing at a rapid pace, thus the CIDP diagnosis. I have had 2 IVIG treatments, both with no success. I am seeing myh neuro next Monday in hopes of a more aggressive treatment, other the the PT she has ordered. I too have had the feet on fire feeling, and also the freezing cold feet.
      Hang in there! Before my dx, I was a 4th degree black belt, teaching martial arts 10 hours a day, 6 days a week! This disease is humbling, and just remember that the smallest of baby steps is a HUGE stride in recovering from this disease. GBS can go into remission, although CIPD is re-occuring, and to date no cure for either one. It can be controlled, and at a great cost to our life styles, but you need to focus on recovery, instead of “how I used to be”…..those days, unfortunately, are no more for all of us here. Listen to your dr., ask questions, get 2nd opinions, etc. If you relapse, get to your dr. right away!
      Take care, and hope your recovery continues!

    • July 25, 2010 at 12:48 am

      Hi Mark,
      It’s a good thing that you got help right away, and even though you’re going through some very rough times right now It sounds like you are improving and the doctor sounds positive. Hopefully your current suffering is only temporary and later the pain and fatigue will subside.
      Right now you need lots of rest and I hope you listen to what your body is telling you. It seems that everybody gets better in their own way and their own time. Take all the time you need. My prayers and best wishes.

    • Anonymous
      July 25, 2010 at 10:21 am

      Hi Mark,

      I am post 11 years GBS and now it is CIPD. It will be a battle and I hope you make a full recovery. Two months ago I went into the worse relapse since 1999 and it is going to take mea months to get back to where I can walk what I consider normal for me LOL. You will have a lot of friends on here giving you support but the other people who look at you will NOT understand what you are going thru. When I get good strength (able to lift and squeeze five pounds with my hands) I have people look at me and think nothing is wrong with you. I have had people even tell me I am not handicapped because I could walk out of a handicapped parking with little problem. Hope you make a full recovery and keep your head up. I am classified as a quad from all the permanent nerve dammage. Most of my EMG readings are of the NR responce but I still can function. Take the good days with the bad and REST all you can.

    • Anonymous
      July 25, 2010 at 2:02 pm

      Hi Mark,
      So glad your recovery is going so well. There are many levels of recovery and in my case I’m in my fifth month with very little results. Keep in touch and God Bless.

      Pat G

    • Anonymous
      July 25, 2010 at 3:05 pm


      You received treatment within a few days and by responding well to treatment it stopped the attack of GBS on the nerves. Your making good recovery, hope you keep improving.

      With your GBS being so recent you need as much rest as possible with your feet up. If your sleepy you shouldn’t force yourself to stay awake. I felt like I was sleeping my life away. When husband and I talked to doctor about the many hours of sleep I was getting during the day and getting a full nights sleep also, his words were, “you sleep”, “sleep any time you get sleepy”.
      The sleeping did lesson over time, I rarely sleep during the day now.

      Good luck to you

    • Anonymous
      July 30, 2010 at 12:11 am

      Glad you got a quick dx and treatment from an experienced doc. That makes all the difference to recovery. Manage your pain wisely with meds, because your body needs all the relief and comfort it can get right now. Co-operate with it, not against it, especially when you tire, and may God bless you in your healing process.

    • Anonymous
      July 30, 2010 at 5:17 pm

      Welcome to our world Mark. Hope your recovery is swift and complete. It is slow going but for most of us we do improve. I am just over 6 months since dx and today I work my first full 9 hour. Still fell a little numbness in feet and hands and also get little twinges or shocks occasional (doctor calls them misfires). All feelings are manageable and if this is as good as I get I am thankful.
      As to your concerns,
      Rest often, (rest is the best medicine you can have) move often and keep going forward. I was on pain meds for about 5 weeks, I had severe pain and tightness under shouderblades but this went completely away. I was most confortable laying down when I needed and still need rest. I compared in to C3PO asking Master Luke if he could shut down. I wish you the best.

    • July 30, 2010 at 6:54 pm

      I walk like C3PO!

    • Anonymous
      July 31, 2010 at 8:10 am

      I went driving for the first time yesterday. I used pizza as my goal and prize of success. It was strange how different the controls were and how my legs felt like they were stuck in molasses. As well as how tiring it was afterwards. I don’t know whether I would want to drive to rehab, on the chance that I would be too tired to drive home.

    • July 31, 2010 at 8:33 am

      [QUOTE=Mark in New York]I went driving for the first time yesterday. I used pizza as my goal and prize of success. It was strange how different the controls were and how my legs felt like they were stuck in molasses. As well as how tiring it was afterwards. I don’t know whether I would want to drive to rehab, on the chance that I would be too tired to drive home.[/QUOTE]

      I totally fear driving and live where driving is essential to living outside your house. Good luck with this and please be careful ๐Ÿ™‚ Enjoy the freedom!

    • Anonymous
      July 31, 2010 at 12:46 pm

      My first driving trip post GBS was with a walker in the back seat. Was to rehab. The sidewalk when I got there was all ice so I couldn’t get out of the car. So instead of rehab I just drove home and took a nap

    • Anonymous
      July 31, 2010 at 1:06 pm

      Very funny, HarryB, how did the rehab people take that? ๐Ÿ˜€

    • Anonymous
      July 31, 2010 at 2:40 pm

      DU, I called them when I got home and told them I wasn’t coming and they should throw some salt around

    • Anonymous
      July 31, 2010 at 4:58 pm

      Although there different levels of GBS, I feel none are easy. They all take a toll on us physically and mentally. Keep in touch and God Bless you and your caregivers.

    • August 20, 2010 at 12:47 pm

      Welcome Mark! It sounds as if you are doing very well! You were fortunate in that you had a neurologist who knew what you had right away, as did I. As far as the rest…yes you need as much rest as you can get! It’s very important to listen to what your body is telling you. When you need to take a nap, take a nap! Most likely it won’t affect your night-time sleep.

      Good luck in your continued recovery….hope to hear from you soon!

    • August 20, 2010 at 1:10 pm

      [QUOTE=northernguitarguy]I walk like C3PO![/QUOTE]

      You too? HAHAHAHA!!!

    • Anonymous
      August 20, 2010 at 8:58 pm

      Mark, truly glad that you had quick response. Rest is vital. It is going to be one baby step at a time. Good Luck.

    • Anonymous
      August 21, 2010 at 3:27 am

      It’s funny about the need for rest. Being a chronic procrastinator, I excel at resting. But don’t we have to build back our muscles as well?

      Also I experience a quiver/vibration inside my legs sometimes when I walk. I used to feel it all the way up my torso. Does anyone else feel that? One time when it was very strong my wife asked me why I was shaking. I said I had to lie down.