Life with GBS! Someone who can understand

Hello! :}

My name is Mitzi. I was diagnosed july 1 2011. I was hospitalized 4 months. A month in my local hospital and 3 months in University of Alabama at Birmingham. They said I have an Acute Guillain Barr'e with Painful Neuropathy. The nerve biopsy revealed "severe nerve damage." Dr. Brunner said he didn't understand why the damage was so "prevalent." When I was first hospitalized the Nero here put me on an IV of steroids for seven days. It almost killed me. Literally.

When I got to UAB they treated me with IVIG, but I saw no improvement. I had a form of GBS where I wasn't paralyzed, I could move my limbs but they were heavy. As if heavy weights where on them- I could not control my hands, i had hand drop. The pain was/is unbearable. If someone or something touched my body it felt like a sledghammer hitting me but at the same time, my body was completely dead- strange. I lost control of my bladder for a while. I had problems breathing but never had to succumb to a ventilator. I could not sit up, or stand without falling to the floor, no strength at all. I was in SPAIN rehab for a month. I've been home for 9 months now, I have managed to finally walk around the house without a walker. My balance is a problem, and I get disoriented. For example, If I stand and close my eyes I WILL fall. If I go out (which is rare) I have to have the wheelchair, or walker depending the walking distance. Steps are still a huge issue.

I have a lot of pain. I struggle with this so much, it's wearing me down. I have no insurance and at this point and time I'm trying to renew my "charity works" at AUB who will cover my expenses. It's been expired since June and I'm struggling afford the medications that I need to cope with the pain. There is a "mercy clinic" here that will provide my meds but it takes time to order the meds. The DRs there have no clue about this disorder. I had to tell them how to spell it, for example.

I know my family is sick and tired of me complaining about my pain and my feeling so tired all the time. No one understands just what this illness is doing to me. They try but they don't get it. It's frustrating. Some days I just cry with this. I'm sick and tired of being sick and tired.

I have questions like is this nerve damage permanent- will my nerves eventually heal. Will I ever feel my legs and hands again. Is this what I'm left with- Is this the residual effect from the nerve damage- As I was in the hospital the Neros told me it would be ok, in six months id be over this... REALLY? I don't think so. I was told this as I had been in the hospital four months. Is the 4 months I was bed ridden included with the 6 months are what... doesn't make sense. Does anyone know anything with absolute certainty about this illness-

I still can't feel my legs from the knees down. They are dead. I feel the pressure on the floor that's how I manage to walk. The dead legs is what (i think) disorients me, and keeps my balance off. The pain- the burning, stinging, the electrical shocks that are so painful it throw my legs outward. In my local hospital when I was suffering all the pain, I was told I shouldn't be feeling all of that pain. I was so frustrated with them I cried- My hands are numbs. When the pain gets so bad it gets into my skin- even the wind of the fan on my skin is painful. So painful my face and neck gets the chills.

Im sorry if I sound so negative in this message. I think it's more frustration and feeling hopeless than anything. I need others who I can relate too. I desperately need that connection with others who can understand and relate to me and this sickness.


Hi Mitzi.I too was diagnosed in Feb. 2011. I was in hospital for 3 months. I had a lot of the same symptoms as you ,but my pain was not as severe. Did they try Plasma exchange treatments on you ? I had that while I was in hospital and for a year after. I am now on IVIG monthly. I still get the electric shocks in feet , the fatigue and trouble with the stairs. I can only say that you need to be patient and believe that better days may come. I am giving myself 2 years to see what recovery I will have and what I may be left with for symptoms. I am just so grateful to be walking ! Good luck.

Dear Mitzi,

According to webmd, you do gradually recover in most cases. I do not have GB, but my late grandmother suffered from it later in life. She was already fighting Psoriatic Arthritis, and Osteoperosis. GB also hit her very hard, but she was able to recover, she worked with a neurologist from Johns Hopkins who came to our area quarterly. You may want to check here to see if they can help you with your meds, if not ask who can. I am a moderator here at Ben's Friends on the Fibromyalgia site and we have a list of 'medical and financial assistance' options. Please leave me a message or post and I will give you any info I can that could possibly help you.

I am so very sorry that you have been ill with this, such a lovely young gal should be having other plans this time in her life. My good wishes and prayers are with you!

Love and hugs,

Susan (SK)

Hello everyone thanks for your replies.

-Glynnis, No I've never had the plasma exchange. I've had steroids and IVIG- The first treatment I had was Steroids- That was given to me in the hospital in my home town. Apparently, the nero here is clueless with this disease. As soon as I got to UAB the Drs told me that he should have never done that. I wonder now, if I'd had the IVIG instead at that crucial time period with this illness it may have given me better results. The second treatment was IVIG it was given to me immediately at UAB.

I do thank God everyday that I didn't lose my life thru all of this & that I'm able to stand/ walk. I can see I'm much stronger and I'm seeing changes that are good. I do get impatient, mostly I think the anxiety comes from being scared.

-Susan, I'm sorry your grandmother suffered so much, bless her heart. I will be checking out that site for the meds, ASAP. Thank you so much for the prayers. It's so appreciated. If i have any questions you betcha i''ll be getting back in touch with you- thank you.

-Mdolich, Gez, you've been thru it haven't ya? I'm so sorry. I'm not familiar with CDIP but I'll be checking it out. Just curious.

I have a question for you: do you have problem wearing shoes? and if so when you go out in public how do go about it- what do you wear? Right now absolutely no shoes will work with me. Tennis shoes makes my ankles roll and my legs buckle a lot. House shoes come off my feet without even realizing it. If I DO go out (which is a rare occasion because im so exhausted most of the time and just cant muster the energy to fight the issues) I wear socks.

HUGS, LOVE, and PRAYERS to you all-



I go to a specialty shoe store, where they sell orthopedic shoes, and they MEASURE your foot, they are also familiar with accomodating special needs. Because of my Sciatica and arthritis, they recommened a new balance sneak for me with a 'roll bar' it keeps your foot/ankle from rolling over the number is 926. Hope this is a help to you.



They come in black and white.

YES! that does help. and I did go to the site for the meds and I'm ordering a card today. Thank you! :} (hugs)

SK said:


I go to a specialty shoe store, where they sell orthopedic shoes, and they MEASURE your foot, they are also familiar with accomodating special needs. Because of my Sciatica and arthritis, they recommened a new balance sneak for me with a 'roll bar' it keeps your foot/ankle from rolling over the number is 926. Hope this is a help to you.



They come in black and white.

Hey Mdlolich, I checked out this CIDP and I honestly wonder about that with me. From what I was told after my nerve biopsy is sounds very familiar. Not the CIDP but they way they explained the nerve damage. The extent of it. - *sigh*

mdolich said:

Welcome Mitzi, I know exactly what your going through. I was GBS but now considered CIDP. I was alsp told that I would recover from GBS but never did. They would bring up the fact that "Andy Griffith" the actor, overcame GBS.

The pain can be horrible at times and the electrical shocks drive me up a wall. I've been living with this since 2003. After my first 10 rounds of IVIG I did fine for about a year and a half. Oh I still had problems with numb heavy feet and if anyone touched me it would send electrical shocks surging through me body. But I was back up walking using cane.

Then in 2005 I started having relapses and ended up back in the hospital paralyzed again. Thats when I was rediagnosed CIDP. In 2006 I was approved for IVIG again and started getting the infusions. I've been getting them ever since, every three weeks.

Here's a couple of sites that might help you with insurance problems. The first is "Advocacy for Patients with Chronic Illness". It was founded by Jennifer Jaff, she was a trial lawyer and a law professor before starting the organization.

Where patients can get free information, advice and advocacy services in areas including but not limited to the following:

How to get and keep health insurance.

How to get health insurance coverage for particular treatments, drugs, and/or therapies.

How to get private disability insurance coverage.

How to get Social Security Disability Income.

How to assert your rights under the Americans with Disability Act (ADA).

How to assert your rights under the Family and Medical Leave Act.

How to ensure that schools accommodate students with chronic illnesses

Here's her website:

Here is another website I just found that might be helpful:

Hope these two websites might be of help to you. Good Luck Mitzi and keep us informed. There are a lot more people out there with GBS then you think, so don't think your alone. Mark es&ie=UTF8&qid=1345493370&sr=1-1&keywords=new+balance+926

Mitzi, here is a photo of the sneaker, instead of the curved in area around the arch, it is straight, so it is a more stable shoe, then adding the 'roll bar' only makes it even more so! Hope this is a help to you, gotta get you on your feet, my friend!

If you tell me of another specific area of medical or financial assistance that could help you, please let me know specifically and I will submit to you everything I have.

Will help or talk anytime,


Thanks so much for sharing Mitzi! this is a great place. I think your post helped a lot of people.

Ooh a pet'm 53 years old, and before I got GB I loved wearing high heels. Now it is absolutely impossible ixnay on the high heels. However, I think that I'm too young to be wearing orthopedic shoes, I think that they are so uuugly!! So I compromized on sandals and birckenstocks. They work fine, look good, and when doing physical therapy I wear sneakers. I never realized what an issue I would have with shoes post GB.

Shoes...oh, who would think they could be such a problem? My GBS hit me in Nov. 2010 and midst all the pain, paralysis, inability to do anything for myself, not being able to wear shoes seems to weave all other symptoms together. I have worn either stockings (and only some stockings), or sneakers. The sneakers hurt my feet but allow me to go outside from time to time. After 18 mos. of attempted recovery, my 94-year-old mother-in-law died, and I was determined not to be the "granny in sneakers" at her Celebration of Life ceremony. On one quick trip out of the house, I found two pairs of shoes...all slip-on sandels which caused only a little pain for my feet. Since the shoes were essentially heeless with a back strap, I thought they were the answer to the "little granny" picture engraved in my brain. Naturally, I tried them on again at home; took two steps, and my paralyzed foot and toes refused to keep those sandels on. My heel slipped out to the floor and I knew immediately that my fifth metatarsal foot bone was broken...along with my spirit. Not only could I not wear regular shoes, but I couldn't wear even granny shoes. Back to The Boot for three months. If a shoe can cause a GBS patient pain, imagine what an orthopedic boot will do. I am, six months post break, back to stockings and sneakers. I write this as a warning to those of you who feel like I careful about rushing the "regular" shoes. If your toes are still paralyzed, they will be unable to hold your feet in a strap-type shoe. GBS is still teaching me about Patience and Hope...I'm hoping that Wisdom is not too far behind. Good luck to you, Myrna.