GBS Diagnoses

Hi Erin,

Wow, you’ve got your hands full. I am certaintly not an expert like Jethro or Gene on some of this stuff, but I am real chatty. So welcome!

I was sent home also, but had the fright of my life when I had trouble swallowing one night and I was alone… please stay with him all the time.

Keep us posted on how he is doing and how YOU are doing. You’ve found a great place, unfortunately.

Tell us more about you and your boyfriend… inquiring minds 😀

welcome! Sorry to have you join us under these circumstances, but we are also gald to be here for you guys.

Mine started in July of this year and I also had really bad headaches before the tingling and such hit me.

I will keep you two in my prayers.
Lori

hi erin & welcome,

hopefully he received ivig or pp once the Dx was gbs. take care. be well.

gene gbs 8-99
in numbers there is strength

I’m no expert but you mentioned he had trouble with his vision. People with Miller Fisher variant of GBS often have trouble with their vision. I had MF in July and was almost sent home from hospital (hadnt been diagnosed, was due to see a neurologist the following day) Luckily they said i could stay if i was concerned as the next morning i had trouble walking. Within 48 hours i was completely paralysed and in an induced coma and on a respirator. I dont mean to scare you, just like someone else said, make sure he has someone with him as sometimes symptoms can sometimes progress very suddenly and some people (i’m not sure what percentage) have difficulty breathing and require ventilation.

OK, now that i have scared the crap out of you i just want to let you know that it is all bad news. I am 3 months post GBS and almost back to normal. It is terribly scary at the time but i figure if you are going to have a serious condition at least this one has a pretty good prognosis!

Someone else asked if he is having any treatment. I have read that it can run its course in time buy treatment halts the progress and enables recovery to commence. I would definitely be pushing for treatment.

Just out of interest, it would be interesting to hear about the experience from an RN’s point of view. I have found myself having to explain GBS to local doctors and nurses so it mustnt be something that is taught much?

[COLOR=”Purple”]Hi Erin and welcome, fellow R.N, to the site . You will find much support and information here. I have CIDP, not GBS but agree with what all the others said. You both are in my prayers. Vicki [/COLOR]

Hi, Erin!

Great name! I am new to these boards as well and have found everyone here ready and willing to listen, comfort, explain and offer hugs and warmth. Welcome !

Hi Erin,

Welcome to the family.

I also don’t mean to scare the crap out of you either as Montanasmom said, but he should have never been sent home within 2 days. He also should have been given IVIG or plasmapheresis to halt the nerve damage. Sometimes it takes 2-3 weeks for GBS to reach it’s peak. There can be extreme, chronic pain with GBS too.

Watch him carefully and you as a Nurse will know if he is having difficullty breathing to get him to the ER, ASAP.

He will need physical and occupational therapy also.

The Flu Vaccine in all probability caused the GBS. That is how many do develope GBS, including my husband.

Take care and stay with us, you will find the people here know more about GBS/CIDP then the doctors do from all their experiences.

I am going to be the broken record… keep a very close eye on him for progression meaning dont leave him alone as he can suddenly become paralyzed and unable to call anyone, it can happen very quickly. Call his neuro about IVIG or PLEX and find out why they arent planning to give it to him. Though GBS does run its course on its own usually, it is important to get this treatment because stopping the progression asap is important to limiting the nerve damage done.

Erin,

I’ll echo what has been said about watching him closely. If he’s not improving, he probably should be in the hospital because the breathing and heart problems can develop quickly.

My own neurologist sent me home without ANY hospital stay, even though I had partial paralysis etc. Fortunately, GBS didn’t cause me to stop breathing (although subsequent tests showed damage to my diaphram muscles). My husband and I were not told that this was even a possibility when the doc sent me home. We only found out later how dangerous this could be.

Also, getting IGiv or PP early is important. It doesn’t cure anything, but it can stop the damage to the nerves, making recovery easier, and leaving fewer permanent problems. I did not have either, and although my own case was mild, I have permanent nerve damage that I believe could have been mitigated if I was given treatment. TWo week follow up is TOO LONG – lots of damage can happen in that time.

Your doctors may be reluctant because both treatments are very expensive. I hate to think that decisions about treatment are made based on cost, but it happens every day.

If you haven’t already done so, sign up for the information packets (both professional and patient packages) that are offered free through GBFSI (go to the Home page of this site). Give the professional packet to his doctors. Yes, unfortunately, you’ll probably be doing a lot of educating doctors, nurses, therapists etc., since most are unfamiliar with GBS. You will probably also have to be very insistent that he receive what he needs.

Best wishes,

Suzanne

Hi Erin,

I also wanted to say something about your boyfriend’s short hospital stay. My fiance had GBS 19 months ago–age 38–and was in CCU for four weeks and inpatient rehab for two weeks. Since he had a very severe case, I’m not too familiar with the way more mild cases are handled. However, if your boyfriend is having trouble walking, I’m surprised he wasn’t sent directly to rehab. As a matter of fact, the more I read your post, the more surprised I am that he was sent home at all. Something about it just doesn’t feel right to me.

Please keep us updated on your sweetie’s condition and know we’re here for you when you need us.

Love,

Shannon