Newbie w/ questions

    • Anonymous
      April 15, 2008 at 2:16 pm

      Hi. My Fatherinlaw was dx with GBS one month ago yesterday. It took them five days to figure it out. His started in his throat with him not being able to swallow and moved to his hands and arms. Then he couldn’t breathe and was put on a ventillator. They started the IVIG which stopped it from moving to his legs. He is paralyzed from the waist up. He has always been able to move his legs just fine although he did have alot of spasms in his legs. After five days of the IVIG they tried the plasmapheresis which worked, because they only gave him the five treatments. He is now in a long term care facility and we are seeing improvement. He is no longer blind, can open his eyes. He can hold his head up and nod for yes or no. He hasn’t been able to talk since the day he went to the ER and that is really hard. We are terrified that he can’t tell us what he needs. I think I have read about every post on here trying to get as much info as I can. I have not heard of anyone else getting GBS in the upper part of their body leaving the legs and feet alone. Does this sound familiar to anyone?

    • Anonymous
      April 15, 2008 at 3:56 pm

      I don’t want to get into my experience with my dad and gbs but I can suggest that if your FIL can use his eyes, have the long term care facility get you a spell chart. My dad was able to blink once for yes and twice for no. We would ask him if the first letter of whatever he wanted to say was in row 1, row 2, etc. He’d blink when we’d get the right row. Then we’d go down the columns of say, row 1 – a, b, c, etc. and he’d blink for the correct letter. we would write everything down that he spelled. while the experience was difficult, to say the least, he was able to communicate with us.
      best of luck to you and your family.

    • Anonymous
      April 16, 2008 at 12:29 am


      How did they finally diagnose your FIL with GBS? Did they do a spinal tap at all? Also, when you say that he isnt blind anymore, is that because he is able to move his eyelids, or was he unable to see even when his eyelids were open?

      There are two varients of GBS I have been thinking of, one being the Miller Fisher varient, the other being Bulbar GBS, both of which start at the top and at times dont affect the lower half.
      Did the doc’s say why they gave plasmapharesis when the IVIg seemed to help? only reason I ask is because the Plasmaph. washes out any good that the IVIg does if it is given too soon after IVIg.

    • Anonymous
      April 16, 2008 at 11:26 am

      Your father-in-laws symptoms sound very much like mine and was diagnosed with Miller Fisher in 1993. I was really weak in the legs & feet but could move them. I never had plasmapharieses – and I am surprised that he had it after IVIG. Read more about Miller-Fisher varient, here. Good Luck. Come back and keep us up tp date on his progress and to ask any more questions.


      GBS-MFv 1993 and 2004

    • Anonymous
      April 16, 2008 at 10:12 pm

      Welcome to the forum and to a new addition to our family as well. I would like to let you know how much we think of our caregivers and your patience and dedication. I am sorry your FIL has to go thru this frustrating illness. I agree that the chart will help you communicate and help all of you REST..

      I did not have the GBS just above the waist. My whole body was paralized and I received IVIG and then the did not think it was stopping the attack and I was still getting worse and ging on live support so they started the PE. After al that I still got worse for another week but then the GSB started to reverse. I was not blind but my eye muscles were paralized and kept my eyelids open and the yes did not focus on the same object for 10 weeks. I also had hemoraging in the eye ball and the pressure was very painfull. When the blood moved it blanked out my vision but that cleared in a few minutes. I seen double of everything. If he is able to move his legs that might be something you can use as a signal too. Make the left foot circle for get the chart and paper and pen out.. Let him REST also. REST is going to be his best friend. Fatigue is over whelming from this illness. Keep the attitude possitive and a happy enviroment! Sounds like you are doing great! Most important ASK Questions both here and be his advocate at the hospital.

    • Anonymous
      April 17, 2008 at 9:57 pm

      My FIL’s first “sign” was a drop of rain that landed on his forehead that stung. His feet were tingling and his throat was bothering him. He went to the doctor but was told that his throat was just fine. The next day he couldn’t swallow. He went to the ER and they did a slew of tests. Not an hour later, he couldn’t clear his throat or cough. His speech was pretty much gone and he had to use a suction every 15 to 20 seconds. They admitted him and started more tests. The next day he couldn’t raise his arm up to suction. The doctors didn’t know what he had but they had crossed off quite a few. They were at autoimmune. They tried to do a spinal tap the next day but he wasn’t able to do it. They started him on IVIG and he really started going down hill. They had to put him on the vent. We are guessing that the IVIG that they had started an hour earlier is what saved him. They sedated him. They brought him out of it for a few minutes here and there to check his lower body for paralysis. They did the spinal tap while he was sedated. They dx him two days later w/ GBS. They IVIG slowed down the GBS. Five days of that, five days waiting for it to work, then the plasmapheresis. They did five of that and decided that he was improving. The doctors decided to bring him out of sedation and that was when we realized he was blind. He could not open his eyes either. Later he could not close them. And now he can see but it is double vision. This is the craziest thing ever.

      Thanks for the Miller-Fisher suggestion. That sounds about right.


    • Anonymous
      April 17, 2008 at 10:12 pm

      I just wanted to let you guys know that after reading and reading all the posts on MFS, I called my husband who was there at the hospital. I asked him to ask his Dad about the double vision. We had not known prior to that that there was a problem there. We thought that he might be depressed because he didn’t want the blinds open or the TV on. Now we know (because we knew to ask) that it was due to light sensitivity & double vision. The staff at the long term care facility has asked for more info about GBS/MFS because of the questions we were able to ask. My FIL is the first patient they have had with GBS, let alone MFS. I have been printing out all the info I have been getting here and taking it with me. The staff is asking for copies. You guys have been a blessing!


    • Anonymous
      April 18, 2008 at 5:26 am

      Michelle, you are doing a great service for your father-in-law, I had a friend do this for me while I was in the hospital – she scoured forums, printed information and brought multiple copies to the hospital for me and the staff. You are a good daughter-in-law and a good person to help out. I hope your FIL is feeling a little better now – I remember the light and noise of the hospital being overwhelming. I always wanted the room dark and the door shut to cut down on the extra noise. My husband ended up bringing a little light in from our house to sit on the nightstand next to me. We left that one on at night so the nurses didn’t have to come in and turn on the 8000 megawatt overhead lights to take my pulse etc. I also had trouble opening and then closing my eyes – make sure they give him some GOOD eyedrops to lubricate his eyes, they tend to feel like they have sand in them. I use LiquiGel, available in the grocery store, it’s thicker than regular eye drops but also doesn’t clog up your tear ducts which probably also don’t work right on your FIL. As for not being able to close your eyes – I used tape and eye patches to help out with this and it only lasted abut 8 months. I still have trouble with my eyes and vision (nearly 2 years) but it’s nothing like it was in the hospital.


    • Anonymous
      April 18, 2008 at 12:38 pm


      Have you signed up to be on the foundations mailing list on the main GBS Foundation Page? The foundation will send you information immediately, and you will get quarterly news letters. In the middle of the newsletter – more of a booklet really – there is a yellow sheet with all the liaisons names in, it includes the areas they live in and their contact details. It is really very helpful to have someone come out to visit your FIL. Seeing someone who has had GBS come walking into the room, and to chat with them is a wonderful pick me up for the patient and family. Let me know what area you are from and I can tell you if there is a liaison in your area.

    • Anonymous
      April 19, 2008 at 10:00 am

      Also, you can request that your FIL be seen by a Neuro Optomologist. I found out after being released from the hospital and seeing him twice in the hospital that I lost much of my field of vision. But that got better and is almost back to what it was before the GBS. He was the one that told me that it was the hemoraging that was happening. In the hospital they never checked my eyes except for dialiating of the pupil. Ofcourse, the reflexes were slow in my eyes and not exsisting in my arms and legs. What the others have added about the drops and eye patch was true with me too. I was given eye exercises to do with my eyes. I was to focus on the trim around the doors and follow that with my eyes very slowly. Then the grid on the ceiling and make my eyes follow letters on the grid.. H Z S T O N W and then the whole alphabet. That helps retrain those muscles to the eye just like rehab works with the upper and lower body. Keep reading and I am glad your FIL has you as his advocate! Caregivers are the greatest assest with this illness!

    • Anonymous
      April 21, 2008 at 5:29 am

      Another Miller Fisher variant here! Mine started with pins and needles in my hands, blurred vision (which became double vision) and my palate not working which made my voice sound funny. I havent heard anyone esle say they had problems with their palate but everyone seems to have slightly different sets of symptoms.
      My symptoms descended from head to foot but mine was very rapid and i was already having trouble walking by the time i was diagnosed which was only 24 hrs after my first symptoms appeared. I was completely paralysed and on a vent within 48 hours. I couldnt even open my eyes. I was in an induced coma for 5 days. When i was able to open my eyes (also then unable to close them properly)i had double vision and was unable to move my eyes so there was no peripheral vision either. I think it is because your eye muscles are paralysed they cannot work together to focus. I would close one eye and look straight ahead and then try it with the other eye and i would be looking at something different! I found an eyepatch helped enourmously. Pity it took several days for a doctor to think of it!
      Early on my only means of communication was to tap my big toe yes or no – it can be frustrating when people dont aske the right questions but we got there eventually. You just need caregivers who are good at charades!

      It may not seem like it but he is already making progress. You just need to realise that each movement regained is a milestone in itself, and worth celebtrating.

      I hope his progress continues, you are doing a wonderful job.

    • Anonymous
      April 22, 2008 at 10:44 am

      Just finished reading the post and had to chime in.

      I recall an eye lubricant, Lacri-Lube, being put in my eyes. It blurred vision to the point of not being able to see at all, but it saved my eyes from drying out. I could not blink at all in the hospital or after I was discharged for a couple of months. It is kind of a vaseline type ointment. It has no medication in it (as I recall) so the nurses put it in throughout the day. Kind of frustrating that I couldn’t see, but soothing and it saved my eyes.

      Lip care was another one. I could not produce saliva for the longest time (REALLY WEIRD!!!) and had chapped/cracked lips SOMETHING FIERCE!!!! 😮 Massive quantities of vaseline and other lip care helped, but after it started, it was hard to fix the problem.

      I don’t know if yoru F.I.L. has lip problems or not, but I’ll never forget mine. Just thought I would throw my opinions in, hope they help.

      Hang in there, you’re doing a wonderful thing for your family. 🙂

    • Anonymous
      April 23, 2008 at 3:57 am


      Am I reading your post accurately…………………..GBS in 1994 and AGAIN, 13 years later????????????? That is scary, that there could be a recurrence that long after the first…………yikes!! 😮

      Glad you overcame both, however:)


    • Anonymous
      May 2, 2008 at 11:49 am


      Thanks for the encouragement that I’ve overcame it twice.

      Yes, I have had two seperate occurances…..13 years apart. I never thought it would happen again, but like you said – YIKES 😮

      I saw that you mentioned you’re 90% back….I’m working in it…but I’m close.

      Take care Perry. Good to get to know you.

      PM me sometime about your goats…I’m considering using one for brush clearing purposes..:rolleyes: ..just a thought.