GBS Miller Fisher

Hi Zinnia,

My fiance Ben had a very severe case of GBS and was in a medically-induced coma for three weeks. He also caught an infection that threatened to take his life, had pneumonia in one lung and had an incident where his blood pressure dropped so low they had to pump him with medication to get it back up again because they couldn’t get him to wake up. It’s been two years now, and he’s recovered quite well, considering. There is light at the end of the tunnel, so don’t give up hope. You sound like a great advocate, and she’s very fortunate you’re there to care for her.

If you want to read of someone else’s case similar to your mother’s, there’s a thread called “Devastating Prognosis” that you might want to have a look at. Manitoban’s father has been in the hospital for quite some time as well.

Good luck and best wishes to your mother. If you need to talk, my number is 630-589-4990.

Love,

Shannon

Welcome Zinnia ~ the most important thing is for you to advocate for your mom’s care. You are right, she is “trapped” and can’t speak for herself. These forums are a good resource for educating the people involved in your mother’s care. Don’t hesitate to print out info and hand it to them ~ highlighted, if need be. Pain is most definitely a part of many GBS cases. And who would know better than the patients themselves!! I am 12 yrs. post GBS and still take neurontin for pain ~ as do so many others. As you have probably read, narcotics don’t give relief.

There will be others along soon to encourage you and share their experiences/wisdom. And don’t hesitate to ask questions. We’ve all “been there, done that”!
I wish for you and your mom continuing and quick (!) improvement.
PS ~ we adore our “caregivers” and know that it has taken alot of effort on their part. God Bless them every one 🙂

I wish my partner had thought to search the web and find this group as i am sure it would have been an enormous support to him to know there are many other family and friends out there who are frightenend and confused by this illness. I hope it is of some comfort to see that many of us recover and are here post5ing our stories as testament to that.

i am sorry your mother has been so terrible affected by this. I was in an induced coma for 5 days. I am not exactly sure why they put me in a coma, I presume to give the body a rest and to help in the healing process. It is probably not a bad thing that your mother was out of it during the worst of it, as you say it is pretty scary to be trapped in a body and unable to communicate. At least your mum is now able to answer yes or no, it may not seem like much, but she may now be able to communicate with her nurses (if they are patient enough to try and ask the right questions – it is a bit like charades at times)

the good news is your mum is making progress. It may only seem like little things to you but every knew movement is a milestone. I can remember the day i could touch my index finger to my thumb. I kept showing everyone and they couldnt understand what i was doing but to me it was a huge achievement. And most days i could see some small improvement which kept me positive.

I am not quite 6 months post gbs and i can hardly believe what i went through, it doesnt seem real anymore. So hang in there, there is light at the end of the tunnel …. it may be a loooong tunnel but hopefully she will come out the other side soon.

Zinnia,

First of all my thoughts and prayers go out to your mother and to you and your family. It sounds like your mother is indeed aware of her surroundings. Others here have been in a similar situation and can offer advice. My best advice is to speak to her and let her know what’s going on around her and with her care. She probably feels very trapped and claustrophobic. Keep coming back, we are here to help however we can.

Jerimy

[QUOTE=zinnia]2 people have mentioned “medically induced” coma. Nobody induced my mother’s coma. That is why I am so confused about all of this and why I think coma might not be the right word.

The neuro at the ICU said she was “in there” and we should always talk to her. So in other words – her mind was awake in there, but her face was paralyzed and she could not open her eyes, move her head or any part of her body – NOTHING. I guess that might not technically be a “coma”. Sounds much worse. 8 weeks of that![/QUOTE]

Zinnia,

To clarify what I meant by “induced”–if I can–Ben’s face was completely paralyzed and swollen, and his eyes looked like they were going to pop out of his head. He couldn’t move his head at all, and there were times when I couldn’t tell if he was in a real coma or not. Since he was on several narcotics and medications to make him forget his time in CCU, I refer to it as a medically-induced coma. However, Ben says he can’t remember anything since he got to the ER, even before they put him on any meds. His body was just so “GBSed out,” that he just collapsed once he got to the hospital.

Hi Zinnia

I think the neuro you mentioned spoke good sense. saying “she was ‘in there’ and we should always talk to her”. Yes, she is ‘in there’ but unable to communicate.

I don’t know what the term ‘coma’ means in medical terminology

GBS can paralysis you totally – your mind is aware and working but the body can do nothing. There have been a good number of people on these Boards who could move nothing bar an eyelid.

That doesn’t mean that the mind is working at mega speed – it would have enough to cope with having the body totally unmovable.

Yes, pain can be a part of GBS, it was for me. It seems to range from those who cannot bear a sheet touching them to those who have no pain at all.

You said “It must be torture I can’t even imagine”. Thinking about how it might feel will just give you nightmares – it won’t help your Mum. I doubt that your Mum got to be 73 without being a strong woman.

You said that “She said you don’t normally see this level of unresponsiveness in GBS patients” – and I find that rather surprising. I know of a man who was in ICU for nearly a year with GBS. So, no it is not the worst case of GBS I have heard of. But really, I would count a worst case based on the outcome more than on the outcome more than on the initial attack.

Personally, I would think that your mother being able to move her eyes and head is a good sign. To get to the stage where the GBS has stopped attacking, has plataeued and improvement has occurred – to the extent that some movement is now possible – I would personally take as a good sign.

Yes, you are right – it is a long process But it starts somewhere – with a movement.

The long road ahead of your Mum is scary, but the road behind her was probably scarier.

You said that “Today we got a call from the hospital that she had opened 1 eye and could respond to yes and no questions by moving her head. Now I almost feel like she is in a worse situation than before. She is trapped in her body. Aware of what’s going on around her, but unable to communicate or move.”

But, your Mum was trapped in her body and unable to respond to questions or communicate, and was aware – and now she can respond to some degree. To my mind, that is mega.

Personally, I would tell your Mum what is happening – that she has GBS, that she is slowly recovering, that it does takes time. That being able to move her eye and head is an indication that her immune system has recognised its mistake and started to correct it. I persnally think that that is a really important time – when the body shows that it has already started to try and recover, to try and correct its error.

I would also tell her about the people on this Board – about how many of us learnt that GBS means Getting Better Slowly, with the emphasis on Getting Better. That we are here. having been where she is, to a greater or lesser extent, and look forward to hearing from her personally, in time.

By the way, I hope your Mum is getting some physiotherapy (first asking if it hurts though). Muscles atrophy surprisingly quickly and keeping the limbs moving is important.

Although it is very early days for your Mum – please, check her pain levels and if she says something hurts, believe her – even if it sounds unbelievable. Because when the nerves are damaged and weak it is veru surprising what hurts and how quickly fatigue hits.

Actually, fatigue is one of the biggest residuals of GBS. It may even be a bit too soon for this – but no, it’s better to know it now because, whilst she can blink an eye and move her head, you would be surprised at how much sheer effort that can take.

Think of trying to start a car with a faulty starter motor – the engine (the muscles) will do their best to work. but without a good electrical charge from the starter motor (the nerves) it will eventually become exhuasted. So, eventually the car gets started – but it cannot go anywhere because it is exhausted.

There is one more thing: before you can even start to imagine that you can look after your Mum, you must firstly look after yourself.

God bless

By”induced coma” i mean i was given drugs to knock me out completely. I was told i would be out of it for 5 days while they gave me the ivig. On the 5th day they started to reduce the drugs and it was a matter of waiting until i regained some level of consciousness. I remember the first few days after i regained consciousness i would be in and out of consciousness and i also suffered some terrible hallucinations. They were a mix of fantasy and reality – i knew where i was, what was wrong with me, the names of the nurses around me but it all got mixed in with some really bizarre dreams.

Just because someones eyes are not open does not mean they are unconscious. I was unable to open my eyes because of the nerves being affected but i was aware of what was going on around me. I have a pretty active mind anyway, but i know when i was unable to move or communicate my mind went into overdrive. I was thinking of all the things i would say when i could communicate again. It was like i was talking to myself inside my head because i had no one else to speak to. It was funny when i found out later that they had told my family i might have brain damage – my brain was working just fine.

[QUOTE]However, Ben says he can’t remember anything since he got to the ER, even before they put him on any meds.[/QUOTE]
This happened to me too Shannon. I have no memory of the ambulance trip from one hospital to the other before i was even diagnosed or much of what happened on the ward before i was rushed to icu. I remember having the lumbar puncture done but nothing else from about midday to the next morning. I can remember being wheeled to ICU but that is it. I have no idea if i had dinner or breakfast lol. And that was before any meds were started.

hi zinnia & welcome,

since she can answer yes or no, ask her if she is in pain. if yes, she needs neurontin. ask back here for doseage. also try to find out where the pain is & what causes it, if anything. she needs passive pt to avoid loss of range of motion. take care. be well.

gene gbs 8-99
in numbers there is strength

I agree with everyone’s posts each of us had our own battles but the war is all the same….just takes time. The hardest job is for the caregivers putting the pieces together each time they come in. You might not get to talk to a nurse or the doctors each day to find out what is going on! I called each of my accomplishments Brags and here on the form some call them Daily Delights. And that is exactly what they were! I was tickled pink when I could do any new for that day and save it to share with the aids, nurses and doctors, housekeeping, respritory to the poor person that come in three times a day brining me my trays! I usually had 4 or 5 brags a day! Some minor, some major and some just humorous! But I took them all as signs I was getting better! I only lost two days of not knowing where i was and I think that was to relax me and let the respirator work and keep me from fighting things. They did give me Morphine and I was lucky to find out that you can have different responses to that and it gave me night and day terrors! I did ask them to stop giving me that. The problems stopped. I was not in constant pain like many were but I did have over sensitive areas where I did not like to be touched. My eyes were stuck wide open and they looked like they were going to pop out of my head. I can not imagine how it was for those that had them shut. I left the tv on two channels that I knew their schedules and that helped me to tell what time it was during the day and at night. Since in some of the rooms I did not have a window or did not face it where I could see if it was day or night. I could feel the breeze across my legs and feet that would excite the nerves and make them buzzzz. I was very lucky that most of my staff could read my lips around tubes and stuff and that made things easlier. I will warn you about asking too many questions it take alot out of the GBSers to keep answering the same questions! Mine left a tablet there with questions they had asked and my answers for others to read. Someone read a humorous book to me several times a week when she visited and we got thru it chapter by chapter. It happened to be a Christmas Story and it was about the time I was in the hospital and I could picture my neighborhood putting all the candles in the windows…etc.. I liked someone to hold my hand between theres and straighten out my fingers. They got dry and so did my feet….my Son’s job was to put hand cream on my hands and hubby talked to me at the foot of the bed and kept creams on my feet. But to have anyone touch the back of my feet was a tear jerker! Later just to have someone comb my hair was a pleasure and to have it washed was an exciting day! Make me feel great! I was surprised that when I was in ICU they told me they were shampooing my hair and I was delighted….found out they put warm water in one of those caps that are filled with powder and I ended up with cookie dough for hair! I appreciated each and every visit that I had with my Physical and Occupational Therapists….they were very slow in their process, but the results were so quick when I think about it! They worked so hard to get me home! So pay attention to those tiny brags they mean so much to us daily and all add up to a trip to the next level of theopy! Also a good idea was mentioned to print out emails and posts from this site and highlight the good parts…not the ones where we call the doctors jerks…that is just plain wrong of us! It is part of the venting process….the journey is worth the time put in to getting well! Great thread that someone started! Nice to see everyone is coming back more after the busy holidays!

zinnia,

many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. you may have a tough battle here cuz it sounds like both the lung & neuro doc are not gbs savoy. try printing this & other good posts for the docs. gbs pain can be excruciating. take care. be well.

gene gbs 8-99
in numbers there is strength

Zinnia
In my reading research on Miller Fisher it can happen that all is paralyzed – eyes fixed (stuck in one place), head, neck etc. This may have been what happened to your Mom. I had GBS and Miller Fisher – I was lucky that I only had one eye fixed (looking at my nose!) for a short period of time. I can’t imagine how it must feel for your Mom. she is in my thoughts. I hope that she shows continued signs of recovery.
Michelle

Zinna – I was DX with Miller Fisher 3/06 ( I am 59) fortunately did not go into a comma – but pretty much everything else though- I was given IVIG 6 times after being in the hospital for 4 days – and started coming around – be careful and DO NOT LET THEM push your mother with physcial therpy – they tried to make me do 4 hrs of PT everyday and feel it really set me back – when I got home – I did water aerobics l hr and walked 1/2 hr and rested, rested, all day and they helped more than anything else. Unfortunately when I was able to start driving again I quit resting and had a really bad set back and had to have another set of 3 IVIGs and have a lot of fasical pain and eating, tingling & vision problems. Tell your mom to take every ones advise rest is the most important thing until you are totally better – the mylin sheathing has grown back. You are great for supporting her.
Sally

Zinnia,

My left eye was stuck open and I too had no movement or communication, but for some reason my family knew I was in “there” and would talk and read and just try and figure out what I needed. I never considered myself comatose, brain was working overtime and when I did sleep I had the strangest dreams, and I hear this is not unusual. They put drops in my eyes for weeks. During that time, the neuro resident brought the interns in daily to prod my open eye with a Q-tip to see if there would be any movement or response. My parents caught them doing this after several weeks and gave them the riot act. 8 months out of hospital I went back and gave the resident a piece of my mind. I am eye phobic to this day. DO NOT LET THEM POKE at her eyes….. And give her something pleasant to listen to, the sounds in the hospital are not conducive to healing and are stressful.
And what I believe the others meant by physio at this stage in just range of motion execises to keep her fromm getting too stiff. She should also be protected against foot drop with a foot board and braces for the wrists to keep hands open. When you go to visit, take the braces off and gently and I mean very gently, stroke open the hands down the fingers to keep them moving. My mother did this for hours on end.

One other thing, make sure you know what the nurses and other caregivers are saying around her. I had one in ICU who was quite unhappy with her job and she degraded me, by saying she hated having to take care of me and was quite nasty about it. I guess she figured since I couldn’t move, I couldn’t hear. Came back and gave her a piece of my mind too.

And like Gene says, pain management is very important. Get her neurontin ASAP. It will improve her quality of life. I just discovered its wonders 27 years after GBS.

Hi, I am very new to this and feel lucky I found this web site. It’s seems comforting to know other people out there went through the same at different stages. I have always been a very healthy person. I have worked at our local YMCA as an exercise trainer for 24 years. On Friday, December 16, 2005 I work up at 4:30 to go to the Y work out and run a class. When I turned on the bathroom light and looked in the mirror I saw double vision later that morning I went to my Dr. who I only saw on the golf course 🙂 Thought I had vertigo. By Saturday afternoon my eyes started closing and speech slurring and hard to swallow. Called the Dr. and met him at the emergency and he thought I was having a stroke so airlifted me by helicopter to Mass General in Boston. I live in the western part of Mass about 2 hrs from Boston. They did a MRI and said no stroke and sent me to the Neurology dept. By Monday morning they told myself, husband and son both good and bad news. Bad news GBS Miller Fisher – good news that I was in the Neurology dept. at Mass General named after Dr. Charles Miller-Fisher what a wow. Whne I think about it how lucky could I have been that my Dr. sent me to Mass General. By this time they had to put me in ICU as my eyes were to put it clear frozen shut face was totally paralized, could not talk, move anything or breath, put on a ventalitor. I did very quickly receive IVIG spent 2 weeks in ICU. About 4 days after out of ICU went to a rehab for a couple of weeks. When I left rehab eyes still frozen shut was learning how to talk and the day before I left rehab in Jan. 2006 I had finally my first real food in my mouth, of course blended. I though great but was extremely hard to move my mouth to open and swallow. Small tiny bites. Anyway it took another couple of weks and my left eye finally opened but not right. Everything came but slow. I was determined to go back to the Gym and with my Dr. approval went back with one eye and double vision to the Y and boy did it feel good to be able to do something. You all out there know it takes a while. I started driving the beginning of April and had to use an eye patch. Decided to try golfing not easy off balance but still was out there doing something I love. If I can help anyone out there with talk etc. please let me know. We all were traped in our bodies, the only thing I could do was write and my hands did tinkle and numb somewhat but I could write to my husband and son in the hospital, and rehab. They saved the paper and how they could read was beyond me. I though I was writing straight and waht a mess all over the place. Phyllis in Greenfield, Ma -413-7737911

Hope to hear from other on your experience. today Jan. 29 I still have double vision but it is getting much better. Last week I started driving without the eye patch. When I go to the movies I see 2 movice for the price of one and I kid the owner I pay one price for 2 movies::)

Phyllis the golfer

Hi Phyllis.
My double vision lasted about 4 months, but did finally clear up. I was cross-eyed as a kid, and through surgery and a lot of eye exercises, the eye straightened out. My opthamologist said that helped in my Miller Fisher recovery, because while the muscles were actually not ready to work, my brain had already been re-conditioned to straighten the eye. Whoda thunk?
Good luck on your continued recovery.

Welcome to the family Phyllis, glad to hear that you are getting better. Hope to get to know you better. Take care and get lots of rest when your body needs it.

Jerimy

It is one of the worst cases I have heard of. My thoughts and prayers are with her and your family. One good thing about her moving to a nursing home is maybe they will involve you more and keep you informed. Keep coming back here. Good luck with everything and take care.

Jerimy