new to this forum and lots of questions

    • Anonymous
      March 29, 2010 at 10:52 pm

      My sister was diagnosed with GBS March 10th. Her symptoms started with double vision and could not walk, she got progressively worse and she cannot open her eyes and she cannot move her arms or legs and she is on a ventilator. The Dr seems to think she is ready to go to a rehab center, what are your thoughts?
      My sister is 63 years old. She had two rounds of Ivig.
      She can shake her head yes and no to questions and she has progressed where she can squeeze you hand with her left hand and she can move her left arm somewhat, her left arm is very weak and she does not move her legs.
      She is in a hospital 1 1/2 hrs from me so I can only go see her on week ends which kills me, but I work full time and my 85 yr old dad who has Parkinson’s lives with me. I am so frightened She is the only sibling that I have. I am having such a heartbreaking time, I can’t imagine what my sister is going through. When she was first admitted they thought she had a stroke, when they diagnosed her with GBS they did not tell her so I did and the nurse said I should not discuss whats wrong with her, If that was me I would want to know what is going on, you see my sister smokes and she would have blamed herself if it was a stroke. Shouldn’t she be informed? I try to build her up when I am there I tell her she can beat this thing and to keep trying, I want so much for her to be able to open her eyes,
      Could anyone tell me what was going through their minds when you were in such a state and what I can do to help? Please prey for her

    • Anonymous
      March 30, 2010 at 12:37 am

      Well Diane’s sister,

      First, you have come to the right place to find what you are looking for.
      And ,, of course she should be informed. I really find it difficult to understand why they dont tell her?? They told[B] me [/B], as soon as they thought they had a confirmed diagnosis. Anyway, it seems like she is already responding positively. 🙂
      Look, it is sooo very important to have a positive attitude about this as you have and to continue to encourage your sister to beat this. I contracted this syndrome in 2004 and am near 100% recovered. I had a team of doctors and therapists that were very positive and kept telling me that I would walk again and that everything would be ok.l….and ohhh that was soooo helpful. I was determined to get back to where i was before, and i have, except for the fatigue that his thing leaves all of us with.
      But just keep reinforcing the recovery thing with her and stay on the medical staff to keep you abreast of what is goin on. Look your sister can hear, and she knows everything that is goin on, but she just cant communicate right now. That is important for you all to know. That she is trapped in her own body and that is a horrible feeling, but she [B]will get better[/B], allbeit slowly however. Just be patient and keep fighting and praying.(that is very important too).
      There will be others that come on here and give you advice and encouragement. This is a great forum and group of people like family, you will see………:)
      Keep coming back………… to you later…..


    • Anonymous
      March 30, 2010 at 8:42 am

      Thank you so much for answering me. I belong to another forum because I have ITP and I found a wealth of information and support for my disease, and I was so glad that I found this one for my sister, when she can I am going to make sure she belongs also.
      The one question you did not answer is “what are you thinking when you cannot communicate with those around you?” And is there anything that I could do for her to make her comfortable and in a positive mode? I cannot say I know how she feels because I don’t I used to resent when people would say that to me about my disease.
      They are possibly moving her to a rehab center today so hopefully we sill see more progress, my expectations are high but I know that each tiny step forward is a plus.

    • Anonymous
      March 30, 2010 at 9:36 am

      diane’s sister,

      If the doctors did not inform your sister what was wrong with her and the nurse did not want you to discuss it with her, it makes me wonder how informed they are with GBS.
      Does she have a husband, children or other family visiting her daily. She needs support of family and someone to talk for her, as Perry said, stay on the medical staff, talk to her doctors, ask question.

      Some questions to ask.

      Are they doing any range of movement with her?

      What is their treatment plan for her as far as IVIG or PP.
      She got this March 10, with only two rounds of IVIG, I don’t know about IVIG as I got PP treatments and someone may come on with suggestions of how often she should be getting treatment.

      What are they doing for her eyes?
      Moisture on the lids, drops in the eyes.

      Is she getting any thing for pain if so what is it?

      What other medications are they giving her?

      Are they watching her for bed sores?

      Do they have counseling on staff?
      This is a shock to your sister, many things are going through her mind and
      most of it is not good.

      I can not answer about how to communicate as I was not on a ventilator.

      She will need all the support and encouragement possible.

      Diane, you and your family will be in my prayers.

    • March 30, 2010 at 9:59 am

      Hi Diane,
      We have cidp so I cannot help you with specific questions regarding what she is feeling. I can maybe think of things that others who have had the experience have written of their experience. That being said, some people take a long time to recover, it is a slow process, others are luckier, only time will tell. As mentioned about pt, someone will probably be starting her on excesizes. I assume she has a catheter, make sure they are taking care of it so she does not get a ut infectionn. Do you feel the eye has gotten worse? If so ask about plasma pheresis and if it is still a possibility. Probably too much time has gone by for it to make a difference, but only the doc could give you that answer. Others have said that they appreciated familiar things in the room such as a pillow,blanket,pictures of children, grandchildren etc. If she cannot speak but can somewhat write, maybe a dry erase board or book on tape. If she cannot write, try to develop a communication system yes no thing. As silly as this sounds, a few of the women on the site have mentioned not having their legs shaved bothered them, not sure how your sister is with that but maybe ask. As mentioned above, the bed sore issue is important, make sure they move her around. As you are doing, positive thoughts are good, you could conmtact the foundation and see if there is a liason in the area that would be willing to visit to show there is hope. An older gentleman that is no longer with us ((not gbs related) always said gbs stands for getting better slowly. You and your family will have to learn patience, both now and for years to come. Once she is better, depending on her progress, they may release her to a rehab facility, you may wnat to inquire about that if it is a possibility and you are the only one visiting, you may want to consider looking into one that is in a good geographical location for you. Keep us posted.

    • Anonymous
      March 30, 2010 at 8:39 pm

      Just a few suggestions:
      Those of us who got GBS know that we felt very afraid when this illness devastated our bodies. We needed to reassure ourselves that we would live through all of it and recover. That we would live through the night, that we would see again, that we would be able to move our limbs again.
      Your sister knows she is very sick, so she needs reassurance that she will make it through. Pray with her.
      If your sister cannot communicate verbally, there are other ways.
      If her vision is badly affected, her hearing may be also. I had partial deafness for months, but could still hear. Sound was intensely disturbing, because the brain causes it to appear distorted and loud. Avoid loud sounds if she can’t handle them.

      If she can hear you at all and understand what is being said, you could try this method of communication:
      1 breath-puff for YES, 2 breath-puffs for NO.
      Place your hand in front of her nostrils and test this.

      Then make a list of questions to ask her, so you know what’s going on.
      Start with the top of her head, right down to her toes.
      Ask about pain, ask about symptoms.
      With GBS, there is a lot of nervous system pain in the skin, and contractions in the muscles. The feet hurt, and need a little tent around them to avoid contact with the sheets; same with the chest. The body often/always feels cold, so warmer temps or a very light soft extra blanket will help. Pressure from the mattress itself can be minimized with a foam mattress or mattress pad. Freshen her lips with a non-allergenic lip-gloss, face and hands with a moist cloth. Keep her warm. If the pain isn’t too hard for her, apply a good non-allergenic lotion to the skin, but very slowly and carefully. Be careful that there are no toxic substances in the room: cleaners, perfume, sprays, even flowers can be hard to deal with, because the body is already fighting to heal itself, and anything that acts as a disturbance or discomfort is a negative.

      GBS makes it hard to think; the whole mind is in a state of utmost exhaustion and confusion. She will probably sleep a lot, and that is normal.
      Most of all, tell her all the small things that are happening in her progress, in order to help her deal with her worries and fears. Compare the progress with the day before, and tell her she is getting better. She needs to be reminded to keep believing she will recover, and trust God. Just before I fell asleep, I always put my body and soul in the Lord’s hands. Every day that I woke up was a day to be thankful. Little by little, the terrible effects of GBS began to diminish, and slowly I got better.
      I pray for her recovery; and May God watch over her!

    • Anonymous
      March 30, 2010 at 10:52 pm

      First of all thank you Perry, Matteyrae, dawn kevies mom & DU. You all have given me much needed info.
      My sister has a husband and 3 kids and 8 grandchildren. I am her only sibling and our dad is still here but he is 86 and has Parkinson’s and lives with me. Her husband visits every day and her kids go whenever they can and I go on Saturday and Sundays, because I have a full time job and It is an hour and half away. I go because I love her and I miss her terribly we used to talk every day, we are very close. I wish I could be there everyday.
      Bed Sores were brought up, how & where do I check for that?I do not think the hospital is doing much for her rehab. Her husband told me they are giving her muscle relaxers, he is not aggressive to ask questions, but I would not think that muscle relaxers would be a good thing if my thoughts are wrong PLEASE tell me. She is on a moving bed I am not sure the technical name for it. She is swollen her hands and her feet, any one know what that is? is it normal? My brother in law said that her heart rhythm was off so they were going to do an echo-cardiogram before they send her to the rehab center. Her blood pressure is still jumping up & down. As much as I want her to go to rehab I am scared that they are doing this too soon. She still has the trake (not sure how to spell). But I want to see her go to the rehab center because I think she would progress perhaps a little better.
      I have seen them move my sister on her side and I’ve seen her sitting up for maybe a half an hour, but most of the time she is on her back.
      My sister is always hot she never has blankets on even before she was ill, so not sure about what her feelings on the blanket issue is I ask her if she is cold and she shakes her head no. “do you want a blanket on?” a very strong NO so maybe it is because it is painful I never thought to ask her that, thank you for enlightening me on that. She does like me to read her cards. I asked her if she wanted me to bring a book to read to her and she shook yes, I told her no Steven King, that’s her favorite, he scares me to death… So I thought I might bring a magazine to read to her something with short stories in it. Does that sound good?
      Thank you again. I appreciate the prayers too.

    • Anonymous
      March 31, 2010 at 2:19 am

      Diane’s sister,

      How is everything goin now?? Hopefully, better. The blanket is probably painful and hot to your sister. That is why she is expressing a “no” so strongly. I am not hot natured, but i was extremely hot while i was in the hospital and the pain…………omg!!
      And, as Matterae mentioned , the IVIG treatments………….the first thing I realized was when you said 2 treatments…………..I believe there are 5 treatments with IVIG to be effective at all. That is what I was given.
      And what she is feeling is frustration deluxe…………….especially on a vent.
      She has very little way to communicate, and yet, she knows very well what is goin on. She has soooo many questions, that you can give her answers too, proactively………….as you are already doing. Your sister is very blessed to have loving sibling and family like you have….keep giving her that support and have faith in the people and information given here, and you will be ok…:)


    • March 31, 2010 at 11:17 am

      Perry brought up the 2 treatments you speak of, did you mean two courses each 4-5 days? That would be two courses of treatment which would be appropriate. If it was only 2 days total, unless they infused very quickly, this would not be a full course. A full course is 2 grams of medicine per each kilogram of weight, 2g/kg.

      You mention some autonomic issues, swelling, heart beat, blood pressure, obviously breathing since she is on trach. We also had gastro issues. Some do get affected as you mention above.

      About the bedsoars, they would be on her butt or spine. Pressure points from laying. You mention they had here sitting up, so it soulnds like they are moving her. Maybe while you or others are visiting you could ask a nurse to roll her over to check. It would not be a good idea for you to. Sometimes there are inflatable mattresses they put bedridden patients on maybe you could ask for that if she is not already on one. Keep us posted.

    • Anonymous
      March 31, 2010 at 12:42 pm

      I was not hospitalized, but I have read on this forum of local people that have recovered from GBS visiting those in the hospital to provide support and reassurance. Is there a way to have someone go visit with her? I think it would really help her a lot. It sounds like there might also be some concerns with treatment and maybe another set of eyes might help.

      Diane’s sister, you might want to call the main number for the GBS/CIDP foundation and ask for the local contacts. I spoke with 2 people that really helped me out when I was frightened, anxious and had so many questions before I even came to this Forum.

      Also, I had a “mild” case and I had autonomic issues, severe GI problems, low blood pressure, and heart palpitations so I can only imagine with a full-blown case. Hang in there….

    • Anonymous
      April 3, 2010 at 9:42 pm

      The swelling in hands and feet is common, coupled with much pain.
      Muscle relaxants would be helpful in controlling the painful muscle contractions she is getting with the GBS. Otherwise these muscle contractions take over all the muscles of the body, bit by bit. I had them every few minutes and each one lasted about 30 seconds to a minute or more, and I had to uncramp every one, night and day for weeks during the worst of the onset. Then the cramps diminished some, but they’re very sudden, occuring at random in different muscles of the body, usually one place at a time, very painful and left the muscle fibers damaged.
      Keep track of her comfort level, whatever it is now, head to toe. I’m so glad she is able to communicate with you; that will make things much easier as she goes through this.

    • Anonymous
      April 4, 2010 at 9:46 am

      If you can communicate with your sister find out if she is having muscle contractions, you may have to describe them to her since this is all new to her. D U. had them at the worst of the onset I did not get them the first year of my GBS and only in the feet and legs, others have had them in the hands, fingers or all of the limbs.
      Ask her about pain and her tingling sensations it can help determine medications for her. There is nerve pain medication for the tingling sensations, lyrica that I am on, can’t think of the name of the other ones.
      Medication doesn’t get rid of the tingling but makes it more tolerable to live with it. The tingling will be less as she heals.

      I am so sorry your sister is going through this and pray she makes improvement each day.


    • Anonymous
      April 4, 2010 at 11:30 am

      Just to clarify, my muscle contractions were severe during onset 2 1/2 years ago, randomly occurring all over my body every few minutes, but the contractions began to diminish after the first 8 months or so. I still get them in all parts of my body–but infrequently and usually with moderate pain.

      The fiery, tingling nerve pain at onset in the skin all over the body, (worse in feet, legs and arms) diminished also, but isn’t gone yet.

      Whatever is happening in your sister will need to be ascertained and dealt with as it occurs, in order to lessen the stress and damage potential of the illness.

    • Anonymous
      April 6, 2010 at 9:57 pm

      I do not know what medicine they are giving her but lately all she is doing is sleeping. Is this a good thing? I only get to see her on week ends because she is so far away and I work full time, so I can only go on weekends. Her Ivig treatments I believe they gave them to her for five days waited a couple of days and gave her another round. They said something about giving her another round. I get Ivig for the autoimmune disease that i have, It’s called ITP which is low platelets, if I get a virus or anything my platelets will drop and they give me usually 3 days of Ivig and I get sicker than a dog from it migraine headaches where I throw up and can’t get out of bed for 3 days. Sometimes when I am suppose to get it for 3 days I can’t make it I can only have 2. Have anyone here gotten such a bad reaction from the Ivig?
      I wish my sister could be sitting here next to me and could read and relate to all of you this forum is a great way to communicate with others that know what you are going through. ( I belong to the ITP forum and I find it very valuable,) and I hope my sister will find this one as valuable to her when she is able to communicate.
      thank you for all your prayers and information I can’t tell you how much I appreciate you.

    • April 6, 2010 at 10:50 pm

      Hi Dianes sister,
      Maybe you could bring your laptop and read to her. If you do not have one, they usually have them on the floor. About the ivig headaches, we too get them, well we did for 2 years and then we spilt up the treatment and it has not been a problem since. Can you get solumedrol as a pre-med? Do you continue to pre-medicate afterwards? Regarding your sister and ivig, more than likely this will be the last round, being that she has gbs. Did they mention that they suspect cidp? Is that why they gave it to her again? How far apart were the treatments? I guess if she is sleeping at least you know she is not in pain, physically or emotionally. Healing will come in its own time, it takes patience, lots of it.

    • Anonymous
      July 5, 2010 at 7:17 pm

      My 2 cents here:
      As far as the blanket… I would of screamed if I could of spoke at the time “NO” blanket, in fact I requested a indirect fan (Via using a alphabet board) over my gown covered body which I was very cold but it seemed better than any warmth. Warmth made the pain worse for me causing what I call “fantom leg” which as I laid there unable to move any part of my body, my legs would feel as if there was frozen metal rods wrapping around my paralyzed legs.
      In my mind I thought I could move my legs from that pain and in my mind my legs moved with much pain through the metal and out giving relief for a few moments before the metal rods seemed to find it’s victim and as punishment for moving the rod would send in ice picks to plunge deeper in my legs. I learned not to stay very long “out” and would endure the pain going back thus avoiding the ice picks punishment which gave seconds of relief.

      My thoughts while laying paralyzed varied from funny dreams of peoples faces with turned up noses that looked like trees to scary thoughts of being kidnapped and nurses trying to poison me. Later I was told it probably was from the morphine I had been given for pain. It was a trip and it left me wondering what was real and what wasn’t. Took me awhile to deal with the reality of it because it seemed very real.

      As far as rehab, movement of body is important but the body is very sensitive to touch. Esp. the touch by others as in my rehab when they came in to exercise my legs..they grabbed my toes to lift my foot so they could hold under my ankle to begin bending my leg. I would be yelling NO inside and not able to say anything verbally I would have to endue the pain. Only when it was noticed of the bruising on my foot did they question if it might be causing pain. Through the alphabet board I later was able to explain how much pain it was to have them touch me let alone try moving my body parts.

      Patience IS one of the hardest things to learn for those who suffer from GBS and also for our caregivers and family.

      Acceptance of the body and life we have now is the second hardest.

      Third is wanting to have more ability to understand all the many things going on within your body.

      This forum has greatly helped me cope with GBS and its residuals.
      No two people go through this the same way. Take different parts from each hopefully to answer your many questions.

      I was diagnosed with GBS on 26 September 2006. Had 2 rounds of IVIG. I was in the ICU for about 8 weeks then in hospital room for about one week or two then to two nursing homes each for about six months before requesting to go home on 19 December 2007. It is now 5 July 2010, I am still using a wheelchair and walker, my hands and feet still numb. I am now 60 yrs old and want for the use of my hands to come back so I can paint again. Trying to accept as it is but understand mending takes time. I am learning adapting by using digital art painting though ambient design online. Each day I look for but not expecting a small new area to of healed. One day about two weeks ago the top of one foot itched terribly and I rubbed it a lot which up til then I couldn’t stand it being touched as much. Then other day while listening to some music I felt my foot move, I looked and one more time it moved just ever so little, but it moved then stopped and has not moved since but it DID move. It WILL again. 🙂

      If I was to say what I would of asked for if I could of then was:

      A fan indirectly blowing because direct was even too much “touch” for me.
      A alphabet board and someone that knew what it was for and how to use it.
      Nurses NOT to wear so much perfume.
      No blanket as explained above.
      Doctors to talk to “me” even if they don’t think I can hear or see them.
      Find some way to communicate with me and me to them.
      A soft Call button VERY important when all you can do is turn your head.
      and last, better flavored ice pops, crushed, LOL

      Thanks for being there for your sister. I know it will and is meaning a lot to her. What she doesn’t need is hearing how bad you feel about not being there as often. We learn to adapt and accept through time.
      Your a wonderful sister to be so lovingly concerned.
      Prayers to her quick recovery.