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Living with Polyneuropathy CIDP, GBS, & CMT

My wife recently diagnosed with GBS

#1

Hello everyone. I’m new to this site. Kind of looking for some insight, info…and a place to hopefully be put at ease about some of my concerns and frustrations. Fair warning, this will be long.

My wife had been battling stomach issues for several months. She was admitted on three several occasions to a hospital due to dehydration over the span of a couple of months (October - November). The diagnosis was Diabetic Gastroperesis. Most everything that went down came back up. Near the end of November, she’d lost about 60 pounds. About that same time, she began having trouble standing and walking. The day after Thanksgiving, she couldn’t stand at all. We both assumed it was the lack of nutrition causing weakness. We opted to go to a different hospital to get another opinion.

In the ER of the new hospital, they quickly figured out she had ketoacidosis. She hadn’t been taking insulin because she hadn’t been eating. Doesn’t really add to this story, but the ER doc said “ketoacidosis doesn’t explain why she can’t stand. We are admitting her for more tests”. Long story short, the neurologist figured out what was happening and opted to start IVIG before even doing the spinal tap. He felt like immediate treatment was crucial. He was correct about his assessment. Results came back with GB-1. Also has a variant of Miller-Fisher.

After 5 treatments of IVIG and 2 weeks of worsening (paralysis had climbed up her body), they did plasmapheresis. I believe it was 5 treatments. Every other day. Her condition worsened to the point she was intubated. I’d done my “online research” and knew this was most likely coming. A feeding tube had already been put in as well.

3 weeks later, the trach was done as well as the peg (I think that’s what it’s called). A week later, we are in a LTAC. She’s been here about a week and a half. Probably a similar story to a lot of other patients with this sydrome. She can move her head and occasionally her shoulders. Nothing below that.

I have a few concerns and hopefully someone here has experienced some of this and can maybe shed some light on it.

She seems “out of it” for lack of better words. Some days I can ask her questions and she will nod “yes” or “no”. Other days, a blank stare. She is on pain meds (also has arthritis), so that may be some of it. Maybe not, I don’t know. Constantly hot or cold. I’m either turning her fan on or off while I’m here. I’ve read other people say they were hot while having GBS.

At the LTAC, it seems as though getting her off the vent is the number 1 priority. I understand that. Getting off of it sooner rather than later is probably better long term. However, a couple days ago, they’d taken her machine down to the point that she was doing all (or at least most of) the work. I don’t know all of the terminology of the machine settings. Anyway, vitals crashed after being on it all day. Heart rate dropped to 40, oxygen saturation fell to the low 80’s. They changed the settings and put her back on full vent … disaster averted. But, that whole day she was basically unresponsive. Blank stare. I asked the doctor about it and he agreed that something was “off”. Blood test showed high CO2 levels. The ventilator was increased (more bpm) to get the high CO2 out. Much more responsive today, yet not completely “there”. This bothers me more than the paralysis. Maybe it shouldn’t.

If I understand GBS, it ascends up the body and then at some point will descend back down. In my non doctor mind, it only makes sense that until this begins to descend, the lungs won’t function correctly? Am I way off on that thought?

I’m keeping a daily log for her to someday be able to read. I keep a pretty detailed account of not only her daily “happenings” but also everything on with myself and our 2 boys (16 and 21). Her dad is up here every day, twice a day. I come up after work every day. If I was in her shoes, I know I’d want to see familiar faces. I don’t have the heart to leave while she’s awake. I wait until she goes to sleep from the night time meds around 10:00 pm every night.

They’re doing physical therapy every other day (I think it’s called passive???). They have boots on and off to prevent foot drop and have things on her hands to prevent…something, I can’t remember. Sorry, it’s been a whirlwind for the last 2 months.

I know all of this takes time. It sure would be nice to see SOMETHING positive at some point.

#2

I am sorry you and your wife are going through this. I was recently diagnosed with CIDP, the chronic form of GBS. It was the most stressful several months for me and my husband. I have just received my 3rd. month of treatment, and boy it has taken its toll on both of us, to the point of me telling you that you need to also take care of yourself. My husband is my rock, and he has been in the hospital for the last 2 days with severe hypertension. I can’t offer you any advice regarding GBS, but your wife will need you to take care of her, so please, take care of yourself. I have dealt with my husband being in the hospital pretty well, but I have definitely seen a setback in myself since even this morning. Best of luck to both of you. If you go on Facebook, there are several good boards on there as well, and some others may be able to give you more advice regarding GBS.

#3

Thank you so much for the reply. You’re not the first to tell me to take care of myself. The biggest obstacle I’ve faced health wise for me has been sleep. I’ve gone many nights with none. I’m doing better lately. There’s so, so much to take care of on a daily basis. So much so that I’ve realized that I took a lot of what she did for granted (and that probably works both ways). It’s been a HUGE eye opener for me. Lol.

When this is all over, the one positive that may come out of it is I believe our relationship will be even stronger than it was.

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#4

Always remember there is hope for full or close to full recovery. As damaged as the body is now, it has, can and will get restored back to its fullness. You don’t sound discouraged yet in your writing so stay that way. Day by day your spouse can improve. Have faith in healing. Stay positive and do all you can to encourage. Bill Scott 10 year CIDP survivor, remission and restored!

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#5

GBS is very painful so they will have her on heavy pain meds, that might have a lot to do with her absence days. I was completely paralyzed, trached and with a PEG tube, they put me in a coma with propofol and gave me IV fentanyl. I was under for 6 weeks and ventilated for 8 weeks. I will warn you, the passive therapy isn’t as effective as I think it should be. My therapist said you lose three percent of available muscle mass for each day without voluntary movement so when she starts her recovery she will need a lot of therapy. Your tendons also tighten up, that’s why they move her hands. I had 5 weeks of in hospital therapy, 7 days per week, and still left the hospital in a wheelchair. However after another 10 weeks of in home therapy and 6 weeks of outpatient therapy I was walking independently with a cane. Now I only use my cane when I leave the house. I do have permanent nerve damage in my left foot and wear a brace (AFO) so I still use a walker in the morning before I get dressed.

I second those that say you need to take time to care for yourself. You can’t help her if you’re constantly exhausted and frustrated. It takes time and patience but 95% of GBS patients make a full recovery.

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#6

I had what they believed to be a milder case of Miller Fisher variant of GBS because I never completely lost my ability to walk or breathe in my own. It was tough though and I had difficultly thinking clearly for a couple of months and I wasn’t on pain meds that could cause that. You are such a great support and that is great that you are keeping notes. My 2 kids were in college (one was just starting). I had a Tdap vaccine in June of 2014 and in about a week had trouble with feeling in my face and ascending numbness/weakness in my foot that traveled up my body. Mine stopped at the point where I could not speak and was beginning to feel a squeeze in my lungs then it began to back off slowly. I recovered with a few mild deficits. I am recently experiencing some kind of autoimmune flare but it is backing back off as well. Stay strong and positive! I was aware of everything and knew I couldn’t think right during it all. Good physical therapy for balance and core strength and light massage later in recovery phase made a huge difference for me. Support means soooo much!!! Good wishes to you and your family!!

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#7

Thank you, everyone, for the replies. All of what you are saying is familiar.

She was sedated while the vent was down her throat but once they put in the trach, they took her off of the meds keeping her “out”.

You mentioned numbness in your face. She had episodes of that weeks before the paralysis began to set in. It was during the stays in the hospital previous to the diagnosis of GBS. She had numbness in her face, chest and groin. The hospital thought it was a potassium deficiency due to dehydration.