Scared at 82

I had a similar experience with the rarity of GBS in 2010. I was taken to the ER, spent all day with no results and went home. Overnight I fell and broke my toe in the process, but I couldn’t feel the pain because GBS numbness had already set into my foot. I spent most of the next day back in the ER, this time they diagnosed me with GBS.

I was admitted to the ICU and started on IVIg the next day. Things got worse even after 7 days of IVIg.

If I knew then what I know now, I would have started with 3 days of Plasma Exchange followed by a week of IVIg. This, I believe, would have stopped some of the permanent nerve damage I suffer today.

There are many treatments available today, what has your mom been given?

EMG,

Testing is important to determine if the disease is still active. Nerve Conduction/Velocity and Spinal Fluid tests are often used. Treatment usually follows after the test results are understood.

Please read the following for some valuable info, especially the section about diagnosis:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/OverviewENG.pdf

If you can share your city, we may be able to suggest some doctors or treatment centers near you.

Jim

My husband is 76 and 9 months ago was diagnosed with GBS. So your mother has a better idea of the road we have traveled, I am sharing our story. He actually had symptoms for several weeks prior to diagnosis, we just did not recognize them as anything serious until his feet (went to dr. but everything checked out fine), then feet and hands began to tingle. From the onset of the tingling, within 5 days he was almost unable to stand unassisted at which time we were directed to the top neurological hospital in our city. Diagnosis was made within 6 hours. Lumbar puncture was then done to confirm. He was given plasmapherisis for 5 days, then 5 days if IVIG. Even though he responded well to those treatments initially, he needed to be intubated/on a ventilator for 5 days then it was successfully removed. He never lost his upper body mobility, but lost the use of his legs and the nerves in his face/neck were completely involved so he lost the ability to speak/swallow. He was in ICU for 6 weeks, in the hospital for another month before going to acute rehab for 4-5 hours of intense therapies a day. There he received a motorized wheelchair to enable him to be independent in getting to therapies and able to get out of the room! By the time he went to acute rehab, he was able to speak and they continued speech therapy for him to reach a point of swallowing and being able to eat. After 6 weeks there, he went to a step-down rehab to continue speech therapy and OT/ PT for 2 months, then home where PT continued in home for 2 months before starting out-patient PT at a therapy facility. By the time he came home he was walking with a walker, very slowly and not very far, but able to walk. He used the motorized wheelchair for about a month at home to go room to room to conserve energy for his PT and increasing his stamina to stand and walk. At the end of the 2 months at home, he was able to walk with a cane and the wheelchair was out of the house permanently. He has two more PT sessions, then he will begin going to the gym and working out at home on his own. He is much stronger and able to do everything on his own except tie his shoes!! I still assist him when putting on slacks/shorts simply because it is easier for him. His feet and finger tips still tingle…sometimes his feet are painful to stand on, but it comes and goes. His hands are not weak but they have begun to itch!!! That topic I will ask about on this forum. The only meds he is on is Gabapentin and Vitamin B. I think a good neurologist is crucial to diagnosis and treatments. The neurologists in our city told us GBS is not rare, but uncommon….it has been amazing how many people in our area have either had GBS, had a family member/or friend with it, or knew of someone else with a family member recovering. There were actually 2 other GBS patients in the same neurological hospital when my husband was there. We were told nerves heal slowly and the older we are, the longer it takes. So depending on how severe a case the patient has (my husband was quite serious) plays a part in how long it takes for the nerves to come back. Your mother is not alone, but it is a very difficult….especially when the staff does not know what they are dealing with. Neurological things are not like other ailments that you just “get better”. It takes time and patient and I would think that at her age, she needs to be where she gets the proper care and therapy to strengthen her legs so she can eventually be mobile again….safely. You do know that you can appeal the decision to send her home if you see that it is not the right thing to do. You are her advocate, so speak up and question anything you need an answer to. I agree with Jim-LA that if you can share where you are located, perhaps we can help direct you to a place with the knowledge that will help her.

Hi Heidi,
I wonder how your mom is doing now. I have only just joined this forum, and seeing how my mom has been in the hospital since december 1st, I suspect your mom may still be there as well.
My mom spent a total of 152 days in ICU, and just went to rehab on May 3rd. However, due to unexpected sudden lowering of consciousness and drops in heartrate and oxygen, she is now back in the hospital (not ICU) for tests, before they let her go back to rehab.
There is a lot of information about GBS on the internet; google it! One suggestion I got from an ICU nurse who also teaches, is a video made by Holly Gerlach. Granted, she is much younger than our moms (mine is 72), but the video shows remarkably recovery and is inspirational nonetheless: https://hollygerlach.com/my-youtube-video/
She also wrote a book about her experience.
I just ordered another book as well, written by professional (one of whom had GBS himself) and describing the process in detail: check out: Guillain-Barré Syndrome – from diagnosis to recovery by Dr Gareth J. Parry and Joel S. Steinberg MD PhD. It is explained in laymen’s terms.

By the way: my sister is an occupational therapist and hand therapist, and actually had an 81 year old patient who had gotten GBS when he was 74 – he could walk and do almost everything 🙂

Stay positive!!

Parry and Steinberg is the book which explains GBS to laymen. It is recommended reading to anyone who wants to understand this disorder.

Hi Heidi,
thank you for your reply, so good to hear your mom is doing well. My mom is slowly improving. Last week they began trying to ween her off of the ventilator, and this week, she was able to eat for the first time in 8.5 months. She is moving to a nursing home on Tuesday. She can lift her hands to eye height, and can wiggle her toes, but no fine motor skills as yet. Keeping our fingers crossed.
Marcel

Hi,

My mom was just diagnosed with gbs at 83 years old. Any advice on dealing with this? She is on day three of the IVGG treatment. Day two she was doing better but then day three worse again. Is this typical? Looks like there are side effects of the treatment too. I would appreciate any insights or advice on navigating this nightmare with a senior. She had been very healthy and active up to this other then some high bp due to hypertension.

Iam sorry to hear about your mom’s diagnosis, but there is light at the end of the tunnel.
My first question is do you live where you have a good neurological group? We felt fortunate that we had Barrows Neurological right here.

My husband was diagnosed at age 76 with GBS…3 years ago. (You will see my post from April 4. 2016) He was an active, healthy Marine who had no health issues other than slight high blood pressure. For right now I will spare the details of the onset of the GBS, but he had a very severe case and not only was paralyzed, but was on a ventilator for a more than a week. Today he is walking, talking, taking care of himself once again with the only residual being his feet tingle ALL the time. And by the way, his blood pressure is completely normal with no meds!

Plasmapherisis is the treatment that was used initially. It is sort of like dialysis for kidney failure except this removes the tainted plasma and clean plasma is put back in. There were no side effects from this—-though it did make him very cold for a little bit. Warm blankets took care of that! He had the plasmapherisis for 5 days, then the IVIG for 5 days. There was discussion to do two more days of the plasmapherisis…hind sight tells me that it could have been the right thing to do. I say this because he was getting better and then suddenly could not breath (the GBS hit his diaphragm/lungs) and at that point he was intubated and then was put on the ventilator.

Again, the good news: going from being totally paralyzed, unable to breathe, eat, speak, close his eyes, etc. to be 95% normal…..well life is more than good.

I do know that studies/research (Stage 2 trials) are being done using Eculizumab, but I do not believe it is approved at this point. I would check it out if we were on the front end of this diagnosis. Again, plasmapherisis……I would find a doctor who would get this started immediately.

The second part of GBS recovery once the person is out of the danger zone and able to move at any level…is to do the physical therapies. Whatever is asked of the patient, regardless of how difficult or painful must be done. That mentality, doing whatever it takes, is what got my husband where he is today. It was grueling for him and for me to watch, but it certainly paid off.
He still says that he never once thought about not pushing through to get where he wanted to be.

Please stay in touch with us regarding your mother’s condition. We will pray for both of you and her doctors. Tell her that she will recover…..but as all our doctors told us over and over, Time and Patience were going to be our friends.
Regards,
Bev

Hi Corrina,
so sorry to hear about your mom. I wish you all the strength in the world. I honestly don’t know what ‘typical’ is, as what I read online at the time seemed to show the severity was different for everyone – I hope your mom pulls through.
As for the point you are at now – yes, especially during the first month, there can be many ups and downs. Heartrate and bloodpressure can fluctuate wildly at times, requiring meds to stabilise. My mom, who got a very severe case of GBS at age 72, was in a coma for a week, and at one point got to be so bad she literally couldn’t be any worse. But then she woke up, and continued to improve. It is a very scary period of time and I know you must be scared to lose her. We were.
After about a month, normally, patients reach a plateau, and from that point on, there is a lot of work to be done to recover as best she can. But the rollercoaster during the first month is the worst. Hang in there..

Thanks so much for the encouraging words! She has her last day of IGVV treatment tomorrow. She has had a few good days and a few bad days since it started. We are very lucky she doesn’t have paralysis. She is very weak and has numbness in her hands, arms, feet, legs, and sometimes face. She also has speech & swallowing issues. Her breathing is getting a little more difficult so I’m hoping that won’t get worse. My biggest concern right now is the random blood pressure crashes and of course the fact that she is 83. I wish they lived in a more populated area where there were more neurologists. They live in Twin Falls, Idaho and there aren’t enough neurologists here. I tried everything to get her into one when I got her a few weeks ago before she was diagnosed. I kept hitting brick walls and they said they were all booked until January. Finally after calling 911 and hospitalization for almost a week the hospitalist finally called a neurologist. I so appreciate all of the support!

Hi Corina,
Hope your mom doing good now.my mom just get the 4’th cidp last month . And now she still can not walk . I’m wondering how long usually conditions back to normal after get this cidp.
Her last cidp is 2003 , i remember the progress is not as slow as last time . She is 79 by the way .

Hello to everyone! I have read your posts and hope that you are all doing better. I came down with GBS in Aug of 2018 and was hit pretty hard. I spent most of my stay in the hospital in ICU. When I was finally able to move on to a therapy facility, we chose to go to Sheperd Center in Atlanta. I do believe that they gave me life back. It was definitely boot camp! I have been home for 2 months and as you all know, lower legs, ankles, feet and hands continue to be an issue. I can walk with forearm crutches but still have to use the chair for long distances. I do hope that i continue to improve as doctors have told me, but I am fully aware that 100% recovery may not happen. I am very thankful for for where I’m at considering where I started. It took both treatments to stop the progression and as bad as I got, I know it could have been worse. I don’t have any insights into treatment but I do know that if you have a choice of rehab facilities I recommend Sheperd center. Their positive attitude and availability of services are amazing. I wish all good luck with your recovery!