A couple of concerns

My girlfriend of over 2 years, and the person I want to spend the rest of my life with, has recently, Dec. 11, 2014, received a “working diagnosis” of GBS. It goes without saying that this has been a very devastating time for both her, her family, myself, my family, and our friends. To give you some background, she noticed subtle tingling in her mouth (gums) and fingertips (both sides) one day at work and cam home concerned. She had been suffering from a long-standing cold/sinus infection for roughly 2 weeks prior, and would come home every day with such fatigue, like having no energy to do simple tasks. The day she noticed the tingling sensation, I took her to be looked at by my mom who is a nurse and she wondered if she had developed pneumonia or some serious bacterial infection; later that following morning at 5 a.m., she tried to stand up to go to the bathroom, but couldn’t and I had to help her get there. We then drove to the ER and they ran a number of tests, all being inconclusive, and she was going to be released until the doctor asked if she could stand on her own. When she couldn’t, he suspected GBS and we were transferred to a very large hospital with a neuro-ICU. Her symptoms have progressed, and she is now on a ventilator, feeding tube, has a catheter, and her vitals monitored around the clock. She has had 3 treatments of IVIG, but it doesn’t seem, at least to me, to be doing all that much. The doctors have said “it will get worse before it gets better,” and that they are “optimistic” about her recovery.
I feel very helpless and emotional, and I was up for over 48 hours until I slept. My two biggest concerns are this: 1. If the doctors are treating her for this, why are they so apprehensive about giving it an official diagnosis? (They’ve said it has to do with the progression of numbness not being tradtiinal to GBS, but everything else matches) and 2. If you are a survivor of this, what helped you the most from family members, significant other, etc.? As in, what could they do to help you the most in this trying time?
I want to send my love, respect, and sincere caring to those of you that have gone through this. I feel insurmountably guilty for not being to help my girlfriend and I will do anything in the world to help her through this. Thanks for reading this for those that do.

Her initial symptoms are very similar to mine, and I did have GBS. Traditionally, GBS starts in the lower extremities and works it’s way up. In rare cases it happens the opposite. Look up Miller Fisher syndrome… that’s a variant of GBS that starts in the face and works it way down, and is the one I had. It doesn’t happen often and most doctors haven’t seen it, so that’s why they’re hesitant to diagnose. You are doing so much for her just being by her side. It does take time.

I'm sorry you have to see your girlfriend go through this. I am a survivor and the thing that helped me the most was when my family and friends held it together emotionally around me. It hurt me so bad when they'd cry around me and make it apparent that they were afraid of what would happen next. So I really think the best thing you can do is show your support and be strong with her and for her. Goodluck. The doctors are right, things get worse before it gets better. But it does get better, just give it some time. My GBS didn't take a turn for the better until after about 2 months. I was in the hospital for 3 and a half. Goodluck again, best wishes.

Thanks for the insight guys. I really do appreciate it – as weird as it sounds, I’m feeling more hopeful because everyone is rallying around her and the recovery. I know this is probably going to be a very long process, but it helps to know that others are out there. I’ll do my best to keep strong and not get too teary eyed when I’m around her so she can have the rock she needs. Thanks again… Also, is there a research foundation that is credible in dealing with developing ways to combat GBS and other symptoms like it? I would appreciate a link if anyone has it.

When I was in the hospital bed waiting for a definitive diagnosis, I had my lap top with me. I kept going to google with each new symptom and asking, "what is going on?"

Google started out saying it could possibly be GBS but that was probaby unlikely because GBS is rare and only 1 in 100,000 are true cases.

A few symptoms later, Google changed its answer to -- it probably is GBS.

I asked my doctor to consider GBS and pleaded that he run a spinal tap. I was surprised when he smiled at me and asked how I knew about that test. I showed him google's results. I got the feeling he had been waiting for me to ask for the test. Within 10 minutes he arrived at my bedside with a very long needle and said -- let's do it.

Long story short the test was defintive and my diagnosis was almost complete. My neuro wanted one more complete EMG - the technician did the right side and stopped. I asked if he wanted to do the other side - he replied - no your nerves are so bad on the side I completed, I do not need to look at the other side.

I was then, after 3 weeks of waiting, officially a member of the GBS crowd.

That was almost 3 years ago - I now have graduated to the CIDP crowd and will be a lifetime member of that group.

My advice - pray, ask all around you to pray - and above all - try to have a sense of humor. I know that sounds ridiculous, but I believe my ability to look at life as a grand drama, helped me to cope. We are very special people - 1 in 100,000.

So sorry you’re all going through this. The doctors are right saying it gets worse before it gets better. My case was extremely severe - nearly 4 months on a ventilator. That for me was both scary and frustrating because of the tracheostomy I couldn’t speak and of course being paralyzed I was unable to move or make any signals. My husband would use a homemade alphabet board to help me - I would inficate with a blink when he reached a letter I wanted. It was very tiring but it did work. I also was lucky to have audio tapes to listen too. I used to get scared at night and having these playing was company for me.Time seems an eternity when you’re lying on your back looking at a ceiling all day and I would want to hear about my visitors day even if to them it seemed nothing shopping or whatever. I’m sure having you around is helping your girlfriend enormously. What I really want to say to you is that as horrendous as this is things will get better. After leaving hospital I spent 5 months in a residential rehab unit. When I left I was able to walk short distances. A year on from then I was back driving and even back to work part time. It’s been 7 years since this happened to me and honestly if it weren’t for the scar on my neck you wouldn’t know how bad things had been. I was lucky to have a fabulous husband and family and friends who kept me going especially when things were overwhelming to me. You sound a great guy and I know if you can get through this you’ll have a great life together.xx

When I was in the hospital 30 years ago, this same thing happened to a girl named Laurie. I didn't get as bad as to be on the ventilator, but she did. She had to have her eyelids taped shut at night because she couln' close her eyes. She had to be trached 9 times. It does get worse before it gets better,. Thats all I was told to: If she gets to the point where she can't talk, she can still hear you. It doesn't affect your brain. Some people can get so bad that the only way they can communicate is by blinking there eyes for :yes" or "no". Hang in there.I will pray that she gets GREAT treatment and GREAT Dr.'s.

One of the most important issues is to get th right treatment, since this is a rare disease not often seen by most doctors. The fact that she was moved to a larger hospital should be very encouraging. In my case probably two things were most encouraging. First, the diagnosis tha I had GBS. WHILE THING SMOTIME GET WORSE BEFORE THEY GET BETTER, FOR MOST OF US THEY DO GET BETTER. Not always 100%, but better.So I thanked God for my diagnosis. Second remain optimistic about recovery, particularly 100% recovery. You may not get there, but the more optimistic you are, the more therapy will help an the farther you will come. Finally, maintain a sense of humor. It helps. My family is a little crazy and we joke around with someone in the hospital. We laugh as much as possible. We take our minds off of the adversity and find the funny side of life. A year from now or less you will look back at this trial and marvel how far you have come. And don’t forget, God is on your side, let Him help get through this.

Sorry for your girl friend's diagnosis and for what you are all going through. The doctor told me that it will get worse before it gets better, and he was right. She will get better, little by little. Sometimes it will appear like its happening at a snail's pace, but she will get better. Bring her good things to eat as hospital food stinks, brush her hair or do whatever you can think of to make her comfortable. Best wishes for her recovery, for your strength and compassion.

Sounds pretty familiar to me - she should come out of it. Most do ... and I have seen/heard/written about GBS - because I had it back in 1988. I remember being paralyzed - I understand why people that are severely disabled must eat with their hands ... trying hard to grab some food. I had not much control of my hands - definitely could not hold a fork. Just do what the doctors suggest ... what choice do you have? I feel I am completely over it. I am sometimes a bit fatigued, but I am also almost 70 years old - so it is also part of old age.


I did not end up on a ventilator but it did hit me pretty hard about the middle of June this year. It meant so much to me to have family support. It was incredibly scary and I thought that I was not going to make it so I loved having someone with me. Just having your support will mean so much! I hope that she gets better soon and am sending positive wishes your way!

Plasmapheresis. Now. They may want to wait after 5 treatments of IVIG but make sure this is the next step. Day 6 from 1st symptoms, I was in the same place as her: ventilator, etc. But please know that my mental state was calm and unafraid. You're doing just fine.

Firstly, you have my sympathies, this is a horrible illness that takes a long time to recover from but things do get better.

I was diagnosed with a rare form of gbs called Miller Fisher Syndrome (as stated above), it sounds like she may have the same variant. It has similar symptoms (and prognosis) but descends rather than ascends.


With regards to the IVIG, it is not a treatment in the usual sense of the word. GBS/MFS/CIDP are autoimmune conditions, your body is attacking itself. Eventually your body realises that it is doing itself harm and stops, IVIG slows the rate of the attack, thus reducing the damage before your body realises the harm it is doing. It doesn't repair or cure anything which is why the doctors say it'll get worse before it gets better. By day 3 of my IVIG my symptoms had plateaued and by day 5 I was starting to see some improvements (the body can quickly repair bits that haven't received much damage).

With regards to giving a definite diagnosis, I too had a similar situation. It is an illness that shares a lot of traits with similar conditions and thus can be difficult to pin down without a diagnostic test to verify it. Luckily IVIG is pretty harmless so they started my treatment even without an official diagnosis. They then looked at two things to try and verify it:

Elevated CSF Protein: This is in the spinal fluid (though only present in 2/3rds of cases) so it not being there does not mean the diagnosis is wrong, on the other hand it being there is a indicator.

Blood Test: There are a set of blood tests (I think they are anti-gq1b, anti-gm1 and anti-gd3) that are indicators of the illness (different test for different variants) but they said they are unusual blood tests that had to be done in a specialist centre. It took six weeks for them to process the test in my case, which is when they gave me the official diagnosis. If they had have waited that long to start treatment I would have been in a much worse state.

With regards to what might help her; you being there is the main one. The first half of your starting sentence is what I wanted to hear more than anything. It's a worrying time but knowing your partner is there and is always going to be there is the most important. While in hospital I found a radio very important to stopping me from being scared, it took my mind off stuff when visitors weren't there, I was never on a ventilator but couldn't walk. Other than that, lots of positivity and visits etc.

Feel free to ask anymore questions if you think of any.

Good luck


I found that at my worst sometimes people avoided me because they didn't know what to do or how to help-so scary to feel alone with this. Even if you feel you are not helping, you are just by being there. I felt like a train on a crash course. If you are there, you will slow that train and it is the sweetest gift you can offer someone. But don't wear yourself down-you can't always be there physically. I wanted everyone to stay strong so that they could continue to be there in the long run. It's amazing how you can recover from this. I'm running again after 6 months and you would never believe that I could barely walk just a few months ago. Everyone's recovery is different but there is recovery even from the scariest of these symptoms. Keep persevering!

This is exactly what happened to me. It does get worse before it gets better. It’s a very slow process. I was in the hospital 7 weeks. I had to relearn how to walk, talk, eat all over again. The best thing you can do is pray continually and always be there for her. Help her through this. It is very depressing to get this illness. It’s been a year now for me and I still have fatigue, nerve damage in my feet and my face. Due to the nerves still recovering in my feet I have problems walking and still need a walker and a wheelchair. Everyone is different with this. You have to remember that. Give lots of love to your girlfriend and show her that you are there for her. She will be glad that you did. I wish her the best on her recovery.

You will see comments on here that no one will understand unless they have had GBS themselves - this is very true.

People move on with their own lives and they forget. I am now 12 months into recovery (happy birthday for me!) and still struggle everyday with my recovery. Some days are worse than others. The worst part is that I struggle alone.

Down here in Australia I haven't been able to meet a single other person who has had GBS. It is very poorly understood in this part of the world. My wife has been a saint but it is very difficult to tell her that I can't mow the lawn this weekend because of my GBS, when I've mowed the lawn each of the last 3 weekends.

The best advise I can give you is to understand that full recovery takes years. If in 12 months time your girlfriend tells you that she's not really feeling up to that camping weekend you've had planned and all she wants to do is rest, then don't doubt her. I don't look sick at all, so there's certainly no way you can tell of my struggles just by looking at me.

I remember even early in the piece, say 4 or 5 months in and I had to excuse myself from things because I didn't feel up to it, people would comment; "what, are you still sick?" Used to drive me mad.

Anyway to save from rambling, the fact you're here and you care is all you can do right now, just be there for her and we'll all be here for you!

Good luck

Just by spending time with her will be so helpful as it can be a very fearful time for her. Let her know that many other people have gone through this any got better.
If she is in a lot of pain as I was, make sure the staff taking care of her responds promptly!!
And don't let it unbearable (it was the worst pain I ever experienced)

I certainly agree about the pain. I was on regular high doses of morphine for the four months I was on the ventilator. Unfortunately this did make me have hallucinations too. Talking with the doctors afterwards they told me that usually they are able to tell when this is happening because a patient will be vocal and thrash around but Of course I couldn’t do that. I couldn’t have coped with the pain without it!

Thanks to everyone for the overwhelming support / responses.

It truly means a lot that there is a community out there for those dealing with GBS.

The good news as of late is that my girlfriend is doing rather well considering everything. After 2 days of being on a ventilator, she has gained some strength back and can respond to questions using her eyes (blinking for yes and no), she also moves her feet a lotttttt, and she can move both of her arms. The doctors are thinking that she may be off the vent tomorrow or the next day because they say she is breathing on her own again (level of breathing when she was admitted). So overall, I'm glad we went to the ER when we did and I hope that she continues on her recovery. Thanks again to you all that have replied.

Wonderful news! Can you do a mani-pedi?!