Advice please!!!!!

    • Anonymous
      October 4, 2011 at 4:08 pm

      Hi everyone
      Four weeks ago my wife developed flu like symtoms and then two weeks ago these became so severe that she could not get out of bed and three days later she was hospitalised, tests were carried out and GBS was provisionally diagnosed. Three days later she ended up in ICU and now seven days on she has had a tracheotomy. She appears to be nearly completely paralysed with only some slight movement of the head and mouth, she cannot blink. To make matters worse, today her temperature is raised and she has developed a chest infection. The Doctors still will not commit to GBS though they are leaning in that direction.
      I have read loads of useful information from various websites, but I need to understand from survivors what I can do for her now and as time goes by. what could she be thinking, what I need to be looking out for, etc.

    • Anonymous
      October 4, 2011 at 4:41 pm

      Yes and they say that her proteins are raised.

    • Anonymous
      October 5, 2011 at 12:05 pm

      What she’s thinking is:
      What’s happening to me? Am I going to die?
      And you need to reassure her that she is going to get better.
      Try to develop some form of communication, so you can work with her needs.
      Talk to her; she can understand, but might not respond.
      Ease her discomfort in any way possible. Put a pillow on each side of her feet, and the blanket over it, so her foot pain isn’t increased by the blanket pressing on them. Clothing-wise, nylon nightgowns are less painful to the skin than cotton hospital gowns. Push down her eyelids with damp compresses to give relief. Keep her warm; most GBS onset patients feel intensely chilled from head to toe. She has fever from the chest infection, so that’s a fight on its own.
      Realize that this is a fight to stabilize, but she will win it in time.
      Take it a day at a time, and try to find some good moments every day to enjoy and share together. That helps.

    • Anonymous
      October 5, 2011 at 5:11 pm

      Thanks D.U., I started using a letter board, as I point she tries to either nod or shake her head, takes time but we are starting to communicate. I’ll try the damp compress tomorrow.

    • Anonymous
      October 5, 2011 at 5:17 pm

      Hi Alan,

      Sorry your wife has gone down. I think the biggest thing right now for her is you being there and talking to her. She may not be able to let you know right now, but she should be able to hear very well. Maybe too well. I think some of the members on this forum described loud music as painful. So at a quiet tone of voice talk to her. Read to her. Does she have a favorite author or genre? Get the latest and read it too her. Magazines, whatever. Just you being there will help. She’s trapped inside right now so be positive and keep her mind full with anything you can think of.
      I think sometimes it was hardest on my family when I was in your wife’s state. Make you YOU have the support you need too.
      Good luck to you both,
      Johnny Mac

    • Anonymous
      October 5, 2011 at 10:21 pm

      Hi Alan,

      You stated your wife started with flu-like symptoms about 4 weeks ago…that would have been about November 6th. Then you state that 2 weeks ago her symptoms were so severe that she could not get out of bed. That would have been about November 20th – Then 3 days later or about November 23rd she was hospitalized, test were carried out and GBS was suspected. Then after another 3 days she was admitted in ICU, which would have been about November 26th, then after a total of 7 days, or about October 1st, she had a tracheotomy. [QUOTE]She appears to be nearly completely paralysed with only some slight movement of the head and mouth, she cannot blink. To make matters worse, today her temperature is raised and she has developed a chest infection. The Doctors still will not commit to GBS though they are leaning in that direction.[/QUOTE] You need to [U][B]insist[/B][/U] that the neurologist start IVIg treatments @ 2gm/kg body weight of your wife over a 5 day period. Example: If your wife weighs 140 lb divided by 2.2 = 64 kg x 2 = 128 total grams, divided by 5 = 26~grams/day for 5 days. And DO IT ASAP! Every day this treatment is delayed could mean the difference between months vs YEARS in her recovery.

      In fact, print this post and give it to her doctors and neurologist…and be firm when you tell them about the IVIg. Also, do not let them infuse the IVIg more than 125 ML/hr.

      Warmest regards to your wife and you.


    • Anonymous
      October 5, 2011 at 10:54 pm

      After the eradication of polio, Guillain-Barre syndrome is the number one cause of acute flaccid paralysis worldwide today. The problem is that General Practitioners, Emergency Room Doctors, and some Neurologist do not recognize the symptoms of GBS. [COLOR=”Blue”][B]A quick diagnosis with fast treatment of either plasmapheresis or IVIG will determine the extent of damage to a patient’s myelin sheath and their recovery time. It could mean the difference between months or years…and the amount of residual damages to the patient.[/B][/COLOR] The secret is a better education of the symptoms of this devastating and catastrophic disease to all doctors so a quick diagnosis can be made and treatment with either IVIG or Plasmapheresis can be started as quickly as possible to prevent long term residual damages.

      Best regards.


    • Anonymous
      October 5, 2011 at 11:19 pm

      [QUOTE=244alan]Thanks D.U., I started using a letter board, as I point she tries to either nod or shake her head, takes time but we are starting to communicate. I’ll try the damp compress tomorrow.[/QUOTE]
      Add some common words to point at such as: pain, need to be moved, itching (my nose use to itch so BAD from the ng tube), clean trach, eyes dry, etc…. common things that you find that bother her.

      Also, play music that she likes. Set the TV on favorite channels that she likes to watch. TALK to her and let her know everything that is going on….. Some of these things are the only way I survived ICU when I was completely paralysed from the neck down for almost 79 days.


    • Anonymous
      October 6, 2011 at 4:46 am

      Hi Jethro
      They have just completed a course of IVIg and they did ask me how much she weighs, but I should ask about volumes and rates.
      At present she is running a temperature and has a chest infection, they are giving anti Bs for this.
      Another question is that up to yesterday her bood pressure was all over the place and her heartbeat was erratic, she even needed cpr,alarms on her life support systems were going off at least 20 times a day. Yesterday all the vital signs except temperature appeared much more stable and there was no alarms all day, could this be a sign that the attacks are now stopping?

    • Anonymous
      October 6, 2011 at 10:27 pm

      I was in exactly the same boat she is in, complete with the chest infection. Because I had had a brain tumour removed the week before the doctors spent a couple of days looking at that being the cause of my problems before they went with GBS. I sent the machines off a zillion times.
      Do not let all the people she knows visit her one at a time the same day. When you are lying there and can`t say anything you pretty much figure that you are dying cause that is the only reason they would all come. Do insist that she be given good drugs, she will have some wonderful stories to tell you latter. My personal favourite is I believed that my friends took all the equipment from my room and replaced it with crepe paper flowers. I was rather annoyed that Paul Newman didn`t hang around very long.
      Seriously, though, get her a GOOD FEATHER PILLOW or her pillow from home. You have no idea how bad those hospital pillows are, and a nice soft washcloth and towel they can use for her sponge baths, apparently hospitals can’t use fabric softener. It feels like they get their linen from the surplus sandpaper store,
      If you have kids, let her know that they are doing ok and bring them in as often as you can. Not for long visits, just enough to give her kisses and hold her hand and say I love you mom. Let them se she is getting taken care of. I found that the hardest thing, not being a part of my kids lives for the months I was hospitalized.
      As soon as you can let her have her cell phone. The ability to text and communicate with the outside world is a something you really miss.
      Bring her a calendar with stickers of happy faces and enough spaces for writing on. Have people that visit her write something on the days that they visit. I wrote down the day my sister brought me a hot dog, (ya I was craving junk food) the names of the really nice nurses and techs, the day I could move my toes, the day they took the trach out, lots of things. It did come in handy because I also wrote down medical stuff and the insurance used the information latter.
      Don`t be offended if she falls asleep in the middle of you talking to her. Listen to her, ask her what she wants.
      You could be in for a long haul, she might heal faster than they tell you she would, and she will have good days and bad days. You will have good days and bad days. It is one of those times where you have no choice but to deal with it and do the best you can.
      Keep posting

    • Anonymous
      October 10, 2011 at 5:12 am

      Hi Alan,

      Glad to hear they started the IVIg infusions. Are they doing a total of 5 infusions? With the information you gave, they should have started the IVIg about Nov 23rd – 26th, or as soon as they got the results of elevated protein in her CSF. GBS/CIDP are two of the few diseases that will show elevated protein levels, and all the other cells will show normal. And if this is the case with your wife, there is absolutely no reason why the IVIg infusions were not started at that time since she was showing paralysis. IVIg does not cure GBS, but it does slow/stop the demyelination attack on the nerves – in other words, she probably would have less damage than she will have by waiting those extra 10 or so days…or however many actual days it was.

      The acute phase (attack phase) can last as long as 4-6 weeks in some GBS cases, but most last 2-4 weeks.

      Wishing the best for your wife and you.


    • Anonymous
      October 11, 2011 at 4:51 pm

      Hi Jethro
      She is has now completed 2 five day courses of IVIg and the Neurologist believes she has reached the nadir and is moving into the plateau phase. He did say that he would review her treatment in 2 weeks with the view of maybe giving more IVIg or if she had deteriorated then he would move her to another hospital to do PE
      The big worry is that she has been running a temperature of 40 degs, C (104F) for three days now and the anti Bs do not seem to be working.

    • Anonymous
      October 12, 2011 at 9:27 am

      Hello Alan,

      Good to hear she has had two 5/day treatments of IVIg. And she probably has reached the nadir of the progressive phase and is now in the plateau phase. If you recall, up through Oct 4th, her blood pressure and heart rate was all over the place, setting off all the alarms – but on Oct 5th, everything seemed stablized, no alarms…no anything except her chest infection. The attack has probably stopped.

      [B]Progressive phase [/B]
      This phase typically last 2-4 weeks, measured from the observation of the first symptom until no further deterioration occurs. This point is known as the nadir.

      It is in this phase that GBS patients develop the pain, progressive weakening and sensory abnormalities that characterise this disease. The symptoms increase in severity and extent in a very unpredictable way, depending on how badly affected the patient is. Cases of mild GBS reach a clinical nadir in a similar time to those with more severe disease.

      The difference in severity of the syndrome seems to be determined in this phase. [B]Early treatment shortens the transition to the recovery phase, and reduces the risk of permanent physical damage. Treatments focus both on reducing pain and symptoms.[/B]

      Now the doctots need to get a handle on her chest infection, and get her temperature down.:)

      Warmest regards.


    • Anonymous
      October 12, 2011 at 12:09 pm

      Great advice from D.U.!

      I recall being very mentally alert and aware of every thing going on and also very confused. This was 27 years ago for me…. they knew very little about GBS and could not give me any hope.

      Having the forum here and all the information you can receive from the internet and others who have recovered is such a blessing for you and your wife.

      I had no idea what my future held. With the information so many can give you now you can have much hope. I agree with D.U., Let her know the positive information you are finding. She may not respond but she will hear you and I believe the positive information will be very good for her recovery.

    • Anonymous
      October 12, 2011 at 5:11 pm

      Since her case is so severe, has she already experienced the symptom of her chest muscles tighening? That’s the most serious symptom, because it leads to asphyxiation, when a person can’t inhale or exhale. After this point, some patients fight it through only to have lung infections set in, and then have to fight fever in addition to the infection. Fever is not usually present in GBS, it comes from secondary causes. But if she is still fighting these chest muscle contractions, she needs to think and do like a singer and a swimmer, just keep breathing deep and holding her breath for as long as possible through these contractions. And stay awake. With me, they lasted about 5-6 hours, then passed; it sounds like velcro tearing apart in the chest region; and I had lots of chest/back pain for weeks afterwards, and could taste blood in my breath.

      When the fever goes down, she may be already experiencing lots of skin burning and tingling sensation (like pins and needles in your feet when they’ve been asleep, only on various skin surfaces). It helps at this point to diminish discomfort by providing a foam mattress, or thick foam mattress topper under the sheet. Otherwise, the body is in great pain from the pressure of resting on the hard mattress.

      Another thing is extreme sensitivity to light, as well as sound. I drew the shades and even wore sunglasses indoors till my eyes didn’t hurt as much. There will probably be extreme dizziness, even moving the head from one side to another is nauseating, so be careful with any movements, very slow and careful.

      If she is able to at all, get her to keep moving as many body parts as possible regularly, fingers/toes/knees/shoulders/ankles, etc., also to uncramp every muscle contraction as it comes slowly and deliberately, as this minimizes damage. This will be necessary 24 hours a day during acute stage; we GBS’ers don’t get much sleep in this stage, and for many months after.

      She’ll lose weight for a while, and have hairloss, but these will come back again.

      (We all send you hugs and blessings for her recovery; just hang in there, it’s going to get better.)

    • October 12, 2011 at 7:37 pm

      My husband came down with GBS, later changed to CIDP the beginning of the year. He didn’t go as far down as your wife. He declined for months. I remember the sheer terror of the situation and helplessness I have felt though this whole ordeal.

      I wish I could give you great advise, like “it will get better”. You both will get through this….but I am not there yet.

      Posting here is what helped me get through each day. I have never felt so completely helpless and out of control in my life.

      My advise is, take a bit of time for yourself. Go get a cup of coffee and breath. I didn’t do any of this until Marshall started getting better. That was 4+ months. I was a wreck. Well, I am actually still a wreck.

      But, my husband is walking now (with a cane and braces). If you need to talk with someone, please email me! [email][/email]

    • Anonymous
      October 15, 2011 at 5:53 am

      Jane is now showing movement to both sets of fingers and toes on the right foot. She can also move her left shoulder and the Doctors have started a weaning programme for the ventilator, so that is all good news.
      I worry about this developing into CIDP, but it is just a case of wait and see.
      Patsy, your words about taking time for myself, is certainly great advice, as I am already feeling the strain and we are only just into the 4th week of this journey. Just this morning, I took my 2 dogs for a walk over the fields, here in the UK it is autumn and the weather today is great for walking, it has really helped. My problem is about managing my time, as I have now had to return to work. I have told myself to make sure that I find time for myself each day, if only a half hour, lets see if it works!! Anyway time to go to back to the hospital
      Thanks everyone for your posts, this site is not only a great place of knowledge, it is also a place where I find comfort and togetherness

    • Anonymous
      October 15, 2011 at 10:09 am

      I recall that the UK, and perhaps, the European Union have, or had good support groups.

      Maybe you can get useful contact with them.

    • Anonymous
      October 15, 2011 at 7:44 pm

      Dear Alan,

      This is really good news about Jane’s movements of her fingers, toes, shoulder, and especially the program of weaning her from the ventilator.

      Most facilities have a “Passy Muir Valve” that allows the patient on a ventilator to speak when they become strong enough. The Passy Muir valve is commonly used to help patients speak normally. This one-way valve attaches to the outside opening of the tracheotomy tube and allows air to pass into the tracheotomy, but not out through it. The valve opens when the patient breathes in. When the patient breathes out, the valve closes and air flows around the tracheostomy tube, up through the vocal cords allowing sounds to be made. The patient breathes out through the mouth and nose instead of the tracheotomy.

      Some patients may immediately adjust to breathing with the valve in place. Others may need to gradually increase the time the valve is worn. Breathing out with the valve (around the tracheotomy tube) is harder work than breathing out through the tracheostomy tube. Patients may need to build up the strength and ability to use the valve.

      Ask your Doctors/Nurses about the Passy Muir valve – You may be able to speak with your wife.

      Warmest regards.


    • Anonymous
      October 22, 2011 at 12:25 am

      I was in ICU for 32 days and did not have the Trac., but was on the vent. 29 days and therefore unable to make a sound. for the first 3 days I could write with help to communicate some. My first request was to get cooled down. I thought I was in hell for sure with all the heat. before I got worse they got a fan and brought in and pointed it at me. I heard one of the nurses telling someone that the GBS cases she had seen all had to have a fan put on them, as they all said they were burning up. They took cook compresses and put on my forearms and let the fan blowing over the damp skin helped alot for me and the heat problem I was having. My next request was to have someone to move me and go thru all the range of motions really felt good and eased the pain alot when I had that done. Alan that worked good for me, but your wife may be just the
      opposite and may be cold. The people on here have their thrumastate messed up for sure. I hope this helps you in making your wife comfortable. Good luck and give her lots of support from family and friends.

      God bless,
      Drummer GBS 1988

    • Anonymous
      November 1, 2011 at 10:08 pm

      [QUOTE=D.U.]What she’s thinking is:
      What’s happening to me? Am I going to die?
      And you need to reassure her that she is going to get better.
      Try to develop some form of communication, so you can work with her needs.
      Talk to her; she can understand, but might not respond.
      Ease her discomfort in any way possible. Put a pillow on each side of her feet, and the blanket over it, so her foot pain isn’t increased by the blanket pressing on them. Clothing-wise, nylon nightgowns are less painful to the skin than cotton hospital gowns. Push down her eyelids with damp compresses to give relief. Keep her warm; most GBS onset patients feel intensely chilled from head to toe. She has fever from the chest infection, so that’s a fight on its own.
      Realize that this is a fight to stabilize, but she will win it in time.
      Take it a day at a time, and try to find some good moments every day to enjoy and share together. That helps.[/QUOTE]

      All of this is good! Bring a radio in to play her favorite music or audio books. Put the TV on her favorite channel and position where she can see it. On the letter board add words that are common to her such as pain, reposition, it makes it a little easier. Also[B][U] set a schedule[/U][/B] for her to expect you. My husband was there everynight at 11:00…… I would watch for him and it was the highlight of my day and it was quiet for me to communicate.

      Now he made freindly with the nurses to come that late by being very nice, learned to take care of me, and he FEED THEM!! They love to eat, especially home made food…..

      Good luck and keep us updated……

    • Anonymous
      November 7, 2011 at 4:29 pm

      Hi everyone
      After 42 days in ICU Jane has been moved to a specialist rehab ward, which is great news. She has movement in her hands, arms and feet, but most of her face is still frozen including her eyelids, though she can speak.
      One of the worries is that she has blurred eyesight, can anyone assist with information regarding this as it is quite distressing for her.

    • Anonymous
      November 10, 2011 at 7:06 pm

      Hi Alan,

      Damage to cranial nerves weakens the eye-muscles, causing blurred or double vision. It also weakens the facial muscles, causing facial sagging and sometimes making speech unintelligible. This most often happens in a GBS variant called Miller-Fisher Syndrome. Google up MFS and do some reading.

      Warmest regards to Jane and you.


    • Anonymous
      November 10, 2011 at 8:41 pm

      [COLOR=”Green”][SIZE=”4″]Hello Allan.
      I have to agree with you England is beautiful this time of year. I was near Oxford for almost 2 years. It is good to have your time with mother nature and dog.
      I cannot play doctor as some but will say yours wife recovery sounds like mine.[/SIZE]I remember the ones who replyed postive to me really helped me.
      I have your wife and you in my prayers and remember healing is slow I would rejoyce every time I felt a change in healing. Bless you both (Lakoda)[/COLOR]

    • Anonymous
      November 10, 2011 at 9:44 pm

      Alan, I had blurred vision for about 2 years, and I know how distressing that is. I had to relearn how to read in a straight line, and how focus my eyes forward. Healing was slow, but at a certain point it got better, and has improved the past 2 years as well. I still get dizzy at times, and my vision is affected when I am tired, but huge improvement in 4 years.
      Be positive, and work on retraining the eyes, but not to the point of fatigue.
      Does she have constant and/or severe headache?

      Another thing is the damage to the jaw & facial muscles, and swallowing muscles, with possibly some hearing difficulties. I had these problems, but after a few years they were under control. It was awkward to eat and have food fall out of one side of my mouth for awhile, but just be careful with hot drinks or sharp eating utensils, so they don’t cause cuts and burns. She’s getting better!

      And I’ll say right now that one thing that helped me to rehab myself in all these problems was coming to this site, and relearning how to read and type, and think and remember, and put words into sentences again. Same thing with the physical aspect, whatever muscles are working, keep them doing things, but never overdo. Other muscles will come back too, just watch for it; when she feels a little electric shock here and there in the muscles, that is the brain re-connecting the fibres and checking out the nerve impulses; nothing to be afraid of, the healing is happening. Make sure she eats well; protein helped me, but there may be individual differences on that subject. I was hungry for milk (2 gallons a week for the first few years), and meat (ground beef was best, it was easier to digest and gave me strength for days.) I drank Welch’s grapejuice (1/2 cup daily), and hot apple cider vinegar drinks once or twice every day, and they cured my migraines after a few months, and my heart functioned better. I still use grapejuice 1/2 cup daily, and the apple cider drinks as necessary.

      If she has manual hobbies, knitting, etc. it will be awhile before these can be resumed, but there are easier hand-work hobbies; check the internet, I’m doing rug-weaving on a frame with fabric scraps, and my hands can handle it, and I’m getting a sense of accomplishment. So check out what she wants to do for rehab and hobby-fun, and just work with it; there are lots of interests on Yahoo Groups, many sedentary and lots more active ones. The more she does, (but no over-doing), the more muscles may come back later.

      One more thing: I use a tiny bit of Lubriderm Sensitive Moisture lotion around my eyelids to relieve dryness and itching. It’s really good stuff, and has no perfume or lanolin to cause sensitivities. Just wash the face and pat dry; then a small dab of lotion on top and bottom eyelid, then smooth it lightly into skin, but not into the eye. Gives a lot of relief; and is also a great facial skin cream. Buy it at Walmart for about $5 – $10 per bottle.

    • Anonymous
      November 11, 2011 at 6:50 pm


      D.U. makes some good points in the above post. In fact, I had blurred vision and sagging of the left side of my face, but it only lasted for about 2-3 weeks. The reason I referred to possible Miller-Fisher is because of the long tearm affect Jane is experincing. However, it may be affects of GBS – As we know, every case of GBS is a little different from other cases.

      Warmest regards.


    • Anonymous
      December 1, 2011 at 2:02 pm

      Hi everyone
      Firstly I really appreciate all the feedback, advice, kind words and thoughts everyone has posted, I find this forum a great comfort for me personally and it has given me the assistance I need to help support and care for her

      Day 71 in hospital for my wife, she started taking steps using a frame this week and generally is making good progress in all areas except her face, which is still paralysed. This is particularly distressing for her and she is now really worried that this could be permanent. Has anyone any knowledge of if this could be the case? The Doctor is confident that she will regain movement, but it does seem strange that movement has returned everywhere else but there is not the slightest sign in her face
      Kind regards

    • Anonymous
      December 1, 2011 at 11:25 pm

      Day 71 in hospital for my wife, she started taking steps using a frame this week and generally is making good progress in all areas except her face, which is still paralysed. This is particularly distressing for her and she is now really worried that this could be permanent. Has anyone any knowledge of if this could be the case? The Doctor is confident that she will regain movement, but it does seem strange that movement has returned everywhere else but there is not the slightest sign in her face
      Kind regards
      Hi Alan….great to hear about your wife’s progress…..I know this is testing both of your patience, but day 71 is still early on…celebrate every new bit of recovery!

Advice please

    • Anonymous
      January 14, 2008 at 8:40 pm

      Hello, I was diagnosed with a mild case of GBS in March 2007 and have had a slightly up and down course since then. I have posted about this since then. Over the last month, I have not been doing well. It is really, really hard to walk and I get more short of breath with walking. At home, I get tired after washing the dishes for five to ten minutes and have to stop and rest for a while. I also get so tired that it is hard to finish eating dinner. I think some of it may be doing more for the holidays and for my job, but I am worried that it is persisting. I am most worried about my job, because it is my life and I am having as much trouble doing it as I did in March and April. The facial numbness I had had went away, but it is back. My neurologist has repeated the NCV testing and an MRI and wants me to have a bunch of other tests this week. He says the NCV are not worse (although they have changed and the amplitude is slightly lower in two nerves and the NCV is again slightly worse, but it is still in the same ballpark as previous). I tried to be really, really lazy this weekend and two days of really limited activity did not make it better. I think that this is CIDP and that I need treatment. He is an excellent neurologist, but is reluctant to call this CIDP because I have kept reflexes, have fatigue as a primary manifestation now, do not have that bad NCV testing (some decrease in amplitude and some decrease in velocity), had a normal spinal tap, have had blurred vision, etc. My problem is that I have “too many” atypical features. I have several questions.

      If I take off a week from work, might it help? I am worried that my time to help the children is limited and I hate to take off with so much to do to help document their care plans.

      I am having a constricted feeling in my chest. I have read someone who said that they felt that way with CIDP. It feels like there is a cat sitting on my chest all the time and if I lie flat, it feels like I cannot breath. This has been going on for weeks, so it is not a heart attack, but it is uncomfortable. The primary hypothesis that has been put forth is that this is anxiety about all this. I have trouble believing this because it is changes with position and persists despite all other things in my life. Have any of you felt this way as part of the disease?

      Back in October, he tried to get me seen at Mayo and they said they were too busy and were not likely to be able to do testing or therapies that could not be done where I am. I really, really think I need a second opinion at this point with someone who has seen a LOT of GBS/CIDP. Any suggestions–although it is hard to travel, I would go wherever. I need answers.

      Thank you and I apologize if this sounds whiney. I just really do not feel right. I try to take each day as it comes and deal with it, but it is so very hard right now.
      With Hope for cure of these diseases and survival in the meantime.

    • Anonymous
      January 14, 2008 at 8:55 pm

      If you are getting worse it might be CIDP I have a mild case of CIDP in 2004 I just got IVIG last summer and going again next week. I had a normal spinal tap and nerve biopsy. I had the spinal tap about 6 months after I started to get symptoms.
      The pressure on your chest how do you know it is not a heart attack even if it has been going on for weeks? Their are difference signs for everybody when it comes to heart problems. You should get it checked out just in case.
      You tell your DR you thinks it’s CIDP. Ask him for 5 days of IVIG and see if that will help you if it does then you know it is CIDP.

      Goos Luck


    • Anonymous
      January 14, 2008 at 9:02 pm

      Hi : All of your symptoms are consistent with residuals from GBS and do not necessarily mean you have CIDP at all. You might but it sounds like your neurologist is giving you all the tests and in none of them are you positive for CIDP. Many, many people have fatigue as their first symptom and if they overdo it will suffer weaknesses like you describe. The tightness of the chest also occurs to many as a temporary residual from GBS-I had it for several months after diagnosis and so it does not necessarily point to CIDP. The best thing you can do is rest and more rest. You might have lie down all day for a while. I am three years out and must be flat much of the day still. Everybody is different but almost all residuals are helped by rest. If you get as much rest as you can and you still have the same symptoms then there might be something going on. You are not being whiney but are rightly concerned. Your body is telling you you are overdoing things. Good luck, Jeff

    • Anonymous
      January 14, 2008 at 9:58 pm

      I was diagnosed with a mild case of GBS in August 2006. I had a pretty good recovery last year, but in September 2007, I started again with the overwhelming fatigue, tingling, twitching and muscle weakness. I also have an undiagnosed tightness in my chest. Like you, I have been back to my neuro, wondering what is going on. I saw him again in December and he said to wait 2 months (since I had just had gall bladder surgery) to see if it all settles down again. So I have been trying to get lots of sleep each night and taking it easy on the evenings and weekends. Last week I made it through 5 days of work!! That really helped to boost my morale, but I was shot on the weekend. I am anxious to hear what you find out from your doc. Hang in there — get PLENTY of rest!!
      Hugs from Iowa….

    • Anonymous
      January 14, 2008 at 10:09 pm

      Have you thought about coming over to Barnes in St. Louis? My neuro’s are both assoc. professors at Washington University med. school and are most excellent. If you decide to come this way you want to ask for either Dr. Lopate or Dr. Parks, they both specialize in neuro-muscular disorders and had me diagnosed and had started treatment within a very short time.

    • Anonymous
      January 14, 2008 at 10:36 pm

      I suggest you go back and read your original thread you had started before this one. I think a lot of your answers are still here. You went back to full time work pretty quickly after being in AFO’s and power chair or scooter? That was not really what I would call a mild case! Also in your own words you say you are a “hard-core workaholic”. That plus in your own words “stubborn”. Both of those things can work agains the person with GBS. If at all possible I would talk to your employer and see if it is possible to go to a shorter day. Taking a week off might not be long enough to recover like you expect. Giving your health daily attention with a shorter day might let you heal better without the residuals kicking back up. Blurred vision might be the result of weak muscles and not damaged nerves. Even drooping eyelids can result when you are over doing it and cause blurred vision. Computers are know to be hard on vision too. I would not rule out the CIDP and the IVIG but cut back where you can cut back to see if the residuals back off too. Also as you go thru the healing process you will experience alot of changes as places get stronger you will notice more the places that are still weaker. Numbness that moves up and down from just the foot up to the knee and then back to just the toes and then up above the ankle. Keeping a Journal will actually help you know how active you are and what could be the cause of these changes. Go back and read some of the old threads and see how far you have come in some areas and how residuals have stuck with you in other areas. Listen to your body! Reprogram your mind to drop the “hard-core workaholic” lifestyle and take care of yourself. Don’t ever think you need to appologize for long post or asking questions is whinning! Remember it took a team of Doctors putting their heads together to figure out what was causing this illness. It will also take a team of us to keep you smiling!

    • Anonymous
      January 14, 2008 at 10:39 pm

      all before me offer good suggestions including yours. you could try any or all of them. if you take a week off, do not substitute work from work w work at home. in fact also do less at home too. the place below was suggested by a former gbsers from this forum. take care. be well.

      Indianapolis Methodist Hospital 1701 N Senate Ave Indianapolis, IN 46202 (317) 962-2000 I have visited GBS patients there in the past. I know they have experienced GBS/CIDP neuro’s.

      gene gbs 8-99
      in numbers there is strength

    • January 15, 2008 at 4:28 pm

      Hi Hope,

      We have been where you are. Kevin went three months with persistent fatigue and on again off again weakness. This is what was confusing, that he would sporadically get stronger and then weaker. He also did retain his reflexes for quite a while. We too were told the breathing issue was anxiety. I tend to believe there was some truth in that dx, as he still periodically gets it. In fact he did yesterday and today after a delayed migrane from this weekends treatments. In any event, after trying rest, and a repeat ncv/emg, which incidentally was NOT worse than the original, we finally decided on more ivig.

      If I remember correctly, you have never received treatment from the onset, is this true? Is it possible that the autoantibody production has never been fully stopped and you are still producing them. Perhaps you can convince the Dr. to try a couple of 5 day loading doses just to see if there is a difference. At the very least if it is cidp, it will stop further progression. At the very worst, you have cost the insurance co. some money. Oh well, I am sure you have paid 100 times over throughout the years.

      Maybe you could even set up treatment where you work as an inspiration or to connect with the children you work with. I HOPE you can get some answers soon so that you can return to the work you love. WITH ivig if it is cidp, there is more than HOPE, there is life pretty close to how it was. Physically Kevin is near where he was! Emotionally, I will not lie, it is difficult for him to give up one week a month out of his life. We are learning to cope, everyday. He is learning as am I that this is a part of our lives. The last 2 days have been extremely difficult for me, I cannot shake the thought of what would we be doing this very instant if cidp never came into our life. But we have to HOPE that one day there will be a cure or we will beat it!

      Best wishes to you!
      Dawn Kevies mom

Advice please

    • Anonymous
      April 2, 2007 at 8:22 pm

      My 13 year old has an appointment later this month with a paediatric neurologist at a major children’s hospital in Sydney (we live about 300km away).

      What I want to ask is whether or not I should send copies of our journal and the hospital admission records before we go? I don’t want the doctor to pre-form ideas based on others perceptions but don’t want to have to start again from scratch either.

      What do others think?


    • April 2, 2007 at 10:47 pm

      Hi, Kevin is newly dx as well, and I have a HUGE binder with every report, insurance claim, bill, procedure, reaction to a procedure, flow rate, etc. you get the point. Bring it with you, fax any records to avoid repeat testing. I just read an article that a friend sent me and I plan on faxing it to our neuro prior to our appointment on April 17th as well as some questions that came up after reading the article. This way both the Dr. and myself have time to prepare and give thought. Bring everything you have the more informed the better informed as far as I am concearned! Good luck to you! Dawn

    • Anonymous
      April 3, 2007 at 4:16 am

      Austmum, I would strongly advise AGAINST sending records to your new Neurologist. I have been a physician for 40 years and the best information comes from talking to the patient, not what other people think. I doubt if any doctor would have the time or inclination to read paperwork sent by a patient before the consultation. By all means take them with you so that you can refer to them, most doctors would request new tests if indicated and not rely on someone elses.

      Making a diagnosis and deciding on treatment is detective work built on the patient’s story, the examination and any confirmatory tests required. The doctor is building a mental pattern of the process until finally a picture is formed and one has a reasonably certain diagnosis then one can draw on one’s own experience and that of others to arrange a hierarchy of treatment.
      Other doctors ideas and tests concerning the patient play a very small part in this construction. Best wishes DocDavid

    • Anonymous
      April 3, 2007 at 8:50 am

      Although we have only been at this 6 months, I have learned that keeping all of your information in a binder is essential. I take it to all dr. appt, and when the dr. is asking for information, I know exactly where it is. I have also learned, that although the dr offices want all of the previous records before the appt., they really never look at them prior to your appt. Just my observations over the last few months.

    • Anonymous
      April 3, 2007 at 8:37 pm

      I will take the information with me rather than sending it first. I would like the new doctor to see her with fresh eyes and mind.


    • Anonymous
      April 10, 2007 at 11:02 pm

      Speaking as a medical professional I would take the information along and not fax it ahead of time. So many times records get lost. If you don’t take records the doctors may want to repeat tests or send for the information and that will only delay things for you. If it is a good doctor you are seeing he will look at all of the information and take the information from your records and his physical exam to come up with a diagnosis or status. Sometimes another doctors notes will trigger a thought or another thing to check out. I always think more “heads” are better than one.
      Good Luck!

    • Anonymous
      April 11, 2007 at 1:10 am

      I suggest you take a copy of the file along with you, the more information the neurologist has about your child the better, and like you say, you don’t want to have to start from scratch which is what will inevitably happen. Good luck with the appt.

Advice please?

    • Anonymous
      July 21, 2006 at 11:29 pm

      I have just found out today that my daughter has GBS. She is currently 1000 miles away in a hospital with her c/l husband by her side.
      I was told by him (and apparently her request also) they did not want me or anyother member of the family to go to the hospital to be there as he was there. I want to be there but dont wish to create problems.
      For those who have this , did you want your parent with you?(ps she is 25yr)
      I really want to be there for her but do not know what to do, I was told
      the spinal was clear, however the hands and legs are tingling (80%) at this time reflective. She is at the beginning stages of this disease I think.
      Any advice? Thank you

    • Anonymous
      July 21, 2006 at 11:35 pm


      I know that even at my age at the time (34) I was very scared and even though I had others around me, there is no substitute for having your mom there. I wish you and your daughter the best, keep coming back here as we are here to help however we can.


    • Anonymous
      July 22, 2006 at 12:14 am


      I’m 48 and I had GBS two years ago. Yes it will get progressively worse. The doctors will try to stop the progession of the disease with IVIG treatment or plasma exchange. Do they have children. I was over 100 days in the hospital because I became paralyzed. My progressed quickly from my hands and feet tingling to complete paralysis. It will be hard on your son-in-law if it is a long term thing. He will want others there to relieve him. If they have children he will feel the need to be with them. I know my parents wanted to come. It is nice to have people there but better as you get better. I know i was in a lot of pain in the beginning and very tired and wanted to sleep alot. Ask him if you can call her. My mom called me
      and I talked on the phone everyday with her but that was probably after I was able to use my hands again. My parents did visit me in the beginning but I’m sure it was very hard for them to see me that way. My in laws were great and visited me often but not every day. GBS will take a lot out of her and she will need to sleep alot to get better. I still sleep quite a bit and my feet never stop tingling. I’ll pray for her.


    • Anonymous
      July 22, 2006 at 1:54 am

      No they do not have children yet. Its just that he insists that there is
      NO NEED for me to go down there because it will get worse and then get
      better. so why waste the time and money (his words)
      I want to honor his wishes (and hers so he says) however my instinct is to go
      to her. I think I may go down anyways and let what happens regarding
      not listening to their wishes go to the devil. I know it will get worse before
      better, and I cannot stand not to be there for her. My gut says to go and so I am going period. I know the turmoil and feelings for both are irritable, and I
      too think it would help spell him off for a while.
      thank you

    • Anonymous
      July 22, 2006 at 9:04 am

      My 2 cents from a BGS spouse is to let them tell you when they are ready for you to come. The relationship they have may be such that they are a strong team together and they are quite capable of handling this, you may just complicate things. If it is a long term deal I suspect that you will be asked to come help.

    • Anonymous
      July 22, 2006 at 12:26 pm

      Hi DarC,

      I’m sorry about your daughter. My fiance Ben had GBS last year at age 37. We had lived together for six years at that time and had gotten engaged a week before he came down with it. We’ve always been inseparable and considered ourselves to be married at the time.

      After Ben was diagnosed with GBS and sent to CCU, I quickly found out that I had no legal control over anything having to do with his hospital stay. His mother made all the decisions, and when I would call the nurses station before coming to visit, they weren’t allowed to tell me what was going on. It really s*cks for couples like us who know each other’s wishes, but can’t do anything about it. We’ve since signed forms at the hospital to keep that from happening again.

      Personally, even though there was a tremendous amount of tension between my in-laws and me at the time, I was really glad that other people were there with Ben when I couldn’t be. It took a lot of the pressure off me, and I was able to go to work and take care of things at home. As her mother, you have every right to see your daughter, but it’s also very respectful of you to listen to your son-in-law. Like other people have said, this is going to be a long-term situation, and I’m sure they’ll be calling you in no time to come out.

      Good luck!


    • Anonymous
      July 22, 2006 at 1:49 pm

      Dear DarC,

      I was 19 when I got GBS, not married, but had a very steady boyfriend at the time. I was in ICU for about 2 months, and they only allowed my parents and my boyfiend in (not my sister and grandmother). In any case, I digress. I try to see both sides, however, I would [B]always[/B] want my mother there, no matter how close I am to my husband – and I am close. My parents live 17.5 HOURS airplane flight away, and at 39 I long for my mother terribly and wish she were with me, specially when Im feeling unwell or down. Personally, I feel that the more FAMILY there is around the better. Arent families supposed to be there for support and love? Well, thats my feeling in any case. I dont know what your situation is, but personally, if my daughter or son was going through something like this, I would be there because I am their mother, and, my husband would know better than to tell my mother not to come over. Please keep us updated, I will keep you and your daughter in my thoughts and prayers.

    • Anonymous
      July 22, 2006 at 6:01 pm

      I talked to my daughter today she felt up to it (she said she was using her fingers to help say some words) She did tell me that at the end of the week she would like me to be there, but not at this time. It upsets her because she
      thinks I cannot afford to fly or drive, even tho I assured her this was not a problem. Her boyfriend/spouse also talked to me, she is on day 3 of treatment
      and she says she feels sooo much better. I feel good that I will be seeing her when she wishes, but wish she would let me take an active part in her recovery. She has always been soo independant (good?/bad)but I am just happy that I talked to her today. Apparently hers is a mild case of this (altho she did have catheter too?hmm) She is anticipating full recovery, thank god.
      I am amazed at how fortunate I am when I read all the other stuff you are going through. How heartbreaking. Thank you all for your support during the last however many hours. I have made our church aware of this board and people on it and added a prayer for all those going thru this. You may know that I will certainly pray for all of you with any of these syndromes.
      Thank you Thank you.

    • Anonymous
      July 23, 2006 at 11:02 am


      I’m really glad you were able to work things out with your daughter and son-in-law. Trust me when I say that if you’re going there at the end of the week, you’ll still be taking an active part in her recovery. I hope everything goes well!

      By the way, I’m really pleased to say that after a year and five months of Ben having GBS, I’m looking forward to becoming a part of his family. There’s no more tension there at all.

      Best wishes!


    • Anonymous
      July 24, 2006 at 10:59 am

      All is well on the home front for now. I have spoken with soninlaw and it appears he felt i didnt trust him to tell me the truth. Well I did trust him as I told him. I trusted him with my daughters life , I was just upset how I learned
      about what she had (as I said from another family member). However thats all
      gone and under the bridge…its past. Now the main thing is she may be released on Thursday. She will have approx 4mo- 1 yr recovery. She had a mild case however, hers happened mainly in face, and arms and legs. She is able to walk and talk a bit and I have chatted with her. She just didnt want anyone around her to see her like that. She says she will need me more after when she is home than now while in the hospital. So I will go when she needs me most. Doesnt bother me too much, just I felt I should have been there for her at the start, but as someone stated earlier, if they have a solid relationship (which they do and I am grateful for that) then I may only interfere if I went down. I dont at any time wish to create problems for her.
      I am still praying for all those who have this syndrome. It can reek havoc on your life. I thank God for people who are so understanding, even tho they are suffering more than my daughter has. thank you from the bottom of my heart

    • Anonymous
      July 24, 2006 at 4:02 pm

      Congratulations on your daughter returning home! You sound like a very reasonable Mom. I guarantee (as much as I can without knowing you all) that soon they will both need you. As a spouse of a GBS’er with a “light” case I suspect that he will need you at some point to tell him what you just said, that you trust him with your daughter’s life. At some point soon, they will both likely hit bottom emotionally and they will both need your support. Hopefully they both don’t hit bottom on the same day! My wife’s neurologist told us that this is a up and down ride, he told us not to get too low on the bad days nor too high on the good days…try to moderate our moods…he was so right but his advise is soooooo hard to follow. Your daughter and son-in-law have a tough time a head, they need your support and love…hang in there Mom!

    • Anonymous
      July 28, 2006 at 4:42 pm

      Hi Darlene,

      Just wondering how things are progressing for your daughter?

    • Anonymous
      August 16, 2006 at 10:48 pm

      Yes my daughter was diagnosed with GB and thank god she had a minor variance of it. She is back home now. She is still paralyzed in the facial muscles and tired a lot of the time . She will be losing 1/2 year in teaching as her doctor states that she needs the time to recuperate. I am soo thankful that she was young and healthy. She lives 4 1/2 hours away, and her fiance (yes they did decide to marry ) is very protective of her and I am just a phone call when she needs me which we have been having lots of “chats”. thanks all for your concern. It may be a while yet before all is back if ever to normal

    • Anonymous
      August 17, 2006 at 8:53 am

      Its good to hear that she is on the road to recovery. Her doctor is right, her recovery will take time, and often it may seem that she is ready for teaching again, but it is important to remember that her nerves have been damaged and fatigue, and often pain, may be around for a long time.

    • Anonymous
      August 17, 2006 at 10:01 am

      Wow this sounds a lot like the case I had. I started having symptoms on July 3rd and by Friday, when I went to see the neurologist, I was hospitalized to be tested for lyme’s disease, GBS, and MS. I had a very similar case to your daughter’s. Most of my trouble was in my feet, my hands, my face (bell’s palsy that started friday morning), and my back (tremendous pain). I never had any actual paralysis. I was diagnosed with a ‘mild’ case of GBS. I was in the hospital for one day shy of two weeks and had 5 days of IVIG.

      By the way, the catheter was probably because she was too weak to go back and forth to the toilet. I fell once getting up from the toilet next to my bed and probably nearly got the same but managed to avoid.

      My recovery since leaving the hospital 4 weeks ago today, has thankfully been swift. I returned to work earlier this week part time and am able to make our planned vacation to Europe next week. Physical therapy has been massively helpful to my recovery – I go 3x a week for an hour for strength training for my legs, arms, abdomen. I used lydocaine patches for the back pain. I took Cymbalta up until a couple of days ago as well which was very helpful in dealing with the pain in my hands and feet. And I take a lot of alieve for when my muscles are tight.

      If she continues to have a similarly mild case and fast recovery, the hands and feet will potentially be the worst of it as it has been for me. I have to sleep with socks on at night often to help dull the nerve aching / annoyance of the sheets rubbing against them. But that gets better daily. A stress ball to squeeze is great for your hands. And I found typing on the keyboard again, while at first painful, has helped accelerate the strength coming back. The fatigue is also fierce. You just get tired quickly and need to lie down after too much activity.

      If she was holding her face with her fingers to talk I suspect maybe she also has bell’s palsy like I did? I did the same to talk clearly in the hospital. If so, there are lots of facial exercises you can do, and I continue to do, to get my facial muscles back to normal (it works, daily I see the improvements and I’m prob at 85% now). My therapist also encourages me to rub the muscles regularly on that side of my face.

      Good luck to your daughter……she needs LOTS of rest, exercise, and a healthy diet and a great doctor like I have been fortunate to find. It wont necessarily take as long as the doctors warn to recover but she needs to be prepared to give herself the time it takes…be it a month or a year.

    • Anonymous
      August 19, 2006 at 6:38 am

      She is recovering but still has 1/2 her facial muscles arent working, she has a “Elvis” smile 🙂 when she tries really hard. She does get tired a lot of the time, her doctor put her on gavapentin for the pain and this is a neurological? medication . I cannot imagine have pain (headache etc) 24hr around the clock for 2 months. She is working all her muscles daily, physically she is mobile, but tires easily. One good thing, her birthday is at the end of the month, and we all pitched in and bought her a dishwasher (she hates dishes). She picked it out herself. So one less stress for her to worry about.
      She is an amazing woman and I am proud of her. I can honestly say that she
      does have an awesome guy too. He just has a problem sometimes “relating” to people (me:) but we both have one thing thats important to us and thats Michele my belle 🙂 Thank you to all again. I have learned soo much lately and how fortunate we are to have the medical advances the way we do. I thank God that her doctor was knowledgable enough to suspect GBS in the beginning .

    • Anonymous
      November 7, 2006 at 8:11 pm

      I was 23 when I was diagnosed and my spinal was clear too. It was too early in the process for the protein to be elevated from my spinal tap. Even though I was 23 I wanted my parents there for everything. I needed them too. I was in the hospital for 3 months and my family had to take turns in shifts staying with me, but I needed them there. There’s no way her husband can do it all by himself and give her the kind of care and attention she really needs. He will need all the help he can get and should be appreciative of it also.

    • Anonymous
      November 8, 2006 at 8:33 am

      For what it is worth,

      I am 32 and live in NC … I visited my parents in PA one July weekend and took my toddler up to stay with them for a week (about 600 miles) while my wife was on vacation in Western Texas in the middle of nowhere. I flew home on Sunday afternoon from PA to NC, then GBS hit and I was in the hospital by noon on Monday, diagnosed within a couple hours.

      When I learned what GBS was, I pushed both my parents (and I have an extremely loving / caring / wants to be there Mom) NOT to come to the hospital, and also pushed my wife NOT to cancel her vacation. In the end, my wife did come home early, but not until Thursday. I figured that the doctors knew what they were doing, and there really wasn’t anything that my family could do for me. I especially did not want to ruin my wife’s vacation, or my parents special time with their grandson, knowing that the doctors said I just needed to wait this thing out.

      Racer generally puts this much better than I do, but as a very independent, “strong-willed” husband, the last think I wanted was for anyone to have to come care for me … nor did I want to ruin anyone’s vacation time. I felt much better and more comfortable knowing that I was not being a burden on anyone.

      Just a long way of saying that I do understand the situation and both sides of the issue.

      Very best wishes,

    • Anonymous
      October 14, 2007 at 9:21 am

      Well it has now been over a year and I thought I would give all an update.
      My daughter is MARRIED to the wonderful man who stood by her. She was a
      beautiful bride but for her it was upsetting as she still does not have full facial movements. I dont notice it unless she smiles (which the photographer kept insisting she smile and she replied I am ). She is back teaching and for her recovery, she used the game dance revolution (the one with the arrows).
      wow….I tried it and cant do it. Not only did it help with building up her muscles but all other processes. She still is tired a lot and as I said not all facial movement is back. Her doctor states that where she is- is where
      she will be. She keeps trying tho to get more movement back.
      At the reception of their wedding, I made the comment during speeches as
      a quote to her. Last year when she was recovering she stated something to me that was so profound, that it immediately indeared Jeremy(her hubby) to me for life. It was as follows:
      ” MOmma when I wake up and see Jeremy beside me , it makes me glad to be alive”…. I quoted her at the wedding and said to Jeremy I dont need to say anything else to welcome you to our family.. You are family.
      Thank you to all. this has been an eye opening experience (forgive the pun)
      I constantly pray for all who suffer from the many diseases that take such a toll on the family and life as we know it. thank you thank you

    • Anonymous
      October 14, 2007 at 1:03 pm

      I am glad you came back with an update. It is also good to hear that you and your son in law are now so close and that he has been such a rock during her recovery.

    • Anonymous
      October 15, 2007 at 8:02 pm

      My partner, common-law spouse got GBS last year and I needed the help of all of my family and his. Yes I understand your daughter didn’t want you to spend a lot money coming to see her. I felt the same way but my son came anyway and John’s sisters and children as well. I can’t tell you what a help it was. I hope your daughter continues to progress as well. She is indeed lucky if she is recovering and I will pray that it continues and you get to spend some quality time with her. Betsy