From 1st symptom, to diagnosis, to first treatment, to recovery… how long for you?

Hello and welcome. I am still in recovery and it has been a little over 2 years. Also age is also a factor.I got IVIG within 3 days of symptoms

Ron

I was admitted to the er on 1/3/2010 at 6:00 p.m. unable to walk and with no feeling from the chest down, numbness and tingling in my hands, wrist and forearm. By the next day, my face drooped on the left side. My vision was blurred. My tongue and nose tingled and were numb. I could not swallow and my lung capacity dropped to 2 liters. I was transferred to the ICU and was expecting to be on a ventilator by that evening. IVIG was started around 4:00 p.m. and I stabilized before needing the ventilator.
4 more days of the IVIG and 3 days of PT and on 1/9/10, I walked out of the hospital assisted by the arm of a nurse. My recovery continued to get better over the next month. I did not receive any rehab or PT once I left the hospital, but I exercised at home every day. Now, I seem to be at a plateau.
I can walk, drive the car and do most things as before but I still have very numb ankles and feet. My nose still occasionally has that feeling that a bug is crawling up it and tingles most of the time. Vision in my left eye is still a little blurry. My hands and wrists still feel a little numb. I am weak in the legs and tire easily. I am hoping that I will continue to get better over time and thank God for my wife who is helping me through this. I am 57 years old.

Hi Caregiver,
We were 4-5 weeks, the onset was not as drastic but ended up in a paralysis state w/autonomic involvement. Besides a psych, cmt dx we also had gbs only about 5 months later to be redx as cidp. After our initial positive response with ivig (in the hospital under close supervision) we had good results until symptoms re-appeared about 4-5 months later. Hence the cidp dx. We now get ivig at home every 2 weeks and have weaned down from 140grams to 30 grams monthly divided up into 2 week intervals. Now will be the time to watch for increased weakness, more or new pain or any of the initial onset feelings. As this would be indicative of cidp. Some people know within a couple of weeks or like us it was about 4.5 months after first onset.
I saw your other lol message, it was cute. Don’t be too proud of me just yet, I am trying to figure out how to copt and paste Alice’s link to me (without the assistance of my kids) I am going to do it by midnight if it kills me 😮

I am out of the hospital after IVIG for 8 weeks now. I progressed from walker, to cane. I am working three hours per day for the last four weeks. My feet are still numb, hand still tingle. I think I am healing quickly and fell quite lucky. I am hoping for recovery to 100% by this summer but know realistically I may never attain the full recovery and it may take longer but hope is hope. I seem to be on a plateau right now not getting better nor worst. I can walk a mile a day but need a good rest after that walk. At time I am terrified that recovery may not happen but that fear needs to be repressed. I am a great deal better then January. Good luck in your journey with you and your patient. I truly know that my wife has been my rock, cheer leader, and that voice in my ear saying you are getting better but slow down it will come. Good healing
Harry

Hi Caregiver714 and welcome to the forum! I hope you find answers to your questions as much as I have. I usually don’t post much, but I read others posts frequently and have found a great deal of understanding in this dreaded disease. I’m not sure if getting treatment quickly correlates to healing quickly or not. GBS usually peaks by the 4th week of when symptoms started and I think age, how active a person is, and their overall health at the time plays a big part in how GBS progresses and how quickly a person recovers. Unfortunately, I’ll probably never forget [I]MY[/I] timeline of h**l.
Here’s a short version:

1. June 13, 2007 bad upper back pain-took OTC for 5 days with no relief
2. June 18th-June 28-progressive numbness/tingling beginning in feet and legs, loss of coordination, loss of bowel and bladder control, drooping of mouth and slight difficulty in swallowing. Saw 5 different Drs and made 2 ER visits. Was diagnosed with everything from Bell’s palsy to carpal tunnel to ??? Some Drs really didn’t know.
3. June 29th-admitted to hospital overnight for observation by a neurologist after extensive examination that found I had [I]no[/I] reflexes and severly diminished nerve sensations. Diagnosed with: hypertention, hypothyroidism (tsh level was nearly 17, normal is like 5), elevated cholesterol, and of course, bad back pain. Given meds for all 4.
4. July 6-Symptoms worsened and was re-admitted to hospital by neurologist for spinal tap-GBS diagnosed and was treated with IVIG X 5 days and discharged. No PT or OT because couldn’t drive.

It’s been nearly three years and I still have numbness/burning in feet and fatigue if I overdo or been on my feet too long. The severe back pain finally left approx. a month after IVIG. Oh, and one other thing that was as bad or worse than the back pain…I couldn’t sleep…[I]at all[/I]! I probably averaged 3 to 4 hrs of sleep a day for nearly a month. This continued even after treatment, as you can probably tell by the time of this post.

Whew! Got that off my chest for the second time. You’ll probably see this in posts all over this forum, but GBS stands for Getting Better Slowly, and I believe it. I never would have thought that it would take this long.

Good luck with your person and hope he/she will recover 100%.

Dear Caregiver 714,

After the eradication of polio, Guillain-Barre syndrome is the number one cause of acute flaccid paralysis worldwide today. The problem is that General Practitioners, Emergency Room Doctors, and some Neurologist do not recognize the symptoms of GBS. A quick diagnosis with fast treatment of either plasmapheresis or IVIG will determine the extent of damage to a patient’s myelin sheath and their recovery time. It could mean the difference between months or years…and the amount of residual damages to the patient. The secret is a better education of the symptoms of this devastating and catastrophic disease to all doctors so a quick diagnosis can be made and treatment with either IVIG or Plasmapheresis can be started as quickly as possible to prevent long term residual damages.

Just over 13 years ago on Dec. 26th, 1996, my life as I knew it changed forever. I collapsed in my bedroom with both legs paralyzed. My wife, Rosemary, called an ambulance and I was taken to the hospital. The paralysis began to move up my body, and within 4 days my breathing muscles were paralyzed, I had difficulty swallowing, and I had a feeding tube inserted in my stomach. I suddenly found myself “locked in, totally paralyzed and closed out of the life I had known.” The only parts of my body that moved was my eyelids. I had a tracheotomy and was hooked to a respirator that breathed for me. I had a neurological disease called Guillain-Barre syndrome. Unfortunately I was misdiagnosed and did not receive either treatment of IVIg or plasmapheresis. The two neurologists thought my paralysis was caused by problems in my cervical spine and focused all their effort in that area…even after my breathing muscles became paralyzed, and I became totally paralyzed?

On January 7th, 1997 just a little over 2 weeks later: I had GBS (not diagnosed), I had another neurological disease, Transverse Myelitis (not known at the time), I had a blood staph infection, staphylococcus aureus (but the exact type staph infection unknown), I had internal bleeding (source unknown), I had pneumonia, a temperature of 107.9, blood pressure of 44/0 by Doppler (would not register by cuff), an EEG (brain scan) that showed “no activity”, and I was in a coma. It was approximately 3:00 AM in the morning and the doctors told my wife and sons that everything medically and humanly possible had been done, but there was “no hope” for me. The doctors then told my wife to make arrangements for a post-mortem so they would know what “killed me”. But Rosemary did not make those arrangements. Instead, she called our Pastor at 5:00 AM and when he arrived my family and a few close friends that were there circled my bed and prayed for a miracle…I was spared by the Grace of God. The Neurologist did know at this time I had GBS because the staph infection was Endocarditis, an infection that attacks the valves of the heart. I have heart problems, so they called my cardiologist. He is from India and as an adolescent his cousin had GBS, so when he saw me in my condition, he said, “this man has Guillain-Barre syndrome.” However, in this condition neither IVIg or plasmapheresis could be given.

As soon as I had the dexterity to move my fingers I started doing my own research on the Internet, and I studied GBS, CIDP, and other autoimmune diseases every day for more than 8 years. I learned that in severe cases of GBS the reflexes of the brain stem may be paralyzed, thus giving a false positive EEG…and I am sure the “no activity” report influenced the neurologist decision to “pull the plug” on me, and telling my wife to make arrangements for a post-mortem. I am also sure the neurologist “Did not know that the brain stem reflexes could be paralyzed from severe cases of Guillain-Barre Syndrome.”

The GBS progressed into a chronic form of Guillain Barre syndrome, CIDP: Chronic Inflammatory Demyelinating Polyneuropathy. My body continues to produce antibodies that attack my myelin sheath today. I get regular infusions of IVIg, Intravenous Immunoglobulin (Gamma) that stop the attack. I do not have 100% leg strength because of axonal nerve cell damage. I have about 70% of my leg strength as a residual effect of GBS and CIDP and that is after the infusion of IVIG when my strength is at it’s max…and will stay at it’s max for approximately 21/2 weeks, then starts to decline, and after the 4th week I am at my lowest level without using a wheelchair and I get another infusion.

As you can see from my experience, I was not diagnosed and I did not get treatment of either IVIg or plasmapheresis at the onset of my GBS and I have residuals that will last forever. And I even self diagnosed my CIDP but did not have any luck convincing my GP or neurologist. I finally made my own appt at the University of Louisville Neurology Dept. They did an EMG/NVS and diagnosed me CIDP and began IVIg treatments…and I have been getting IVIg since.

Warmest regards.

Jethro

My story will be a little different for several reasons. First of all, it is 47 years this year since I was diagnosed with GBS. Secondly, in the days when I had it, “treatment” was non-existent.

I was a week at home before entering the hospital. I was in the acute care facility for one month. That included a week on intravenous feeding after my lung collapsed because the food went the “wrong way.” Three more weeks with a nasogastric tube – also for feeding. Transfer to a rehab hospital, where I remained for three more months, was followed by three months at home, attending outpatient therapy at the rehab. After a total of seven months, I went back to work full-time.

I was 24 at the beginning of this journey and I ‘m 71 now. If I could wish for something, it would be that there is more research that examines the long term effects. How does GBS affect aging as well as the opposite question of how does aging affect people who have had GBS? For twenty-five years after I “recovered” I thought I did. Whenever anything wasn’t right, I automatically assumed it was something else, and probably worried about “Oh, no! What now.” If I could go back through those first 25 years, I might find that I would view it differently now, understanding the connections there are that I didn’t “get” then.

To conclude, it was gift that took 25 years to appreciate. I am still very involved with the Foundation, with patients and families, with learning. It changed my life for the better in so many ways. I do feel that I’ve “been there, done that” and prefer not to go there again, but I’ve also learned to roll with the punches, and that I have strengths I never imagined, so I deal with whatever comes along, appreciate what I can do, and remember to be grateful at all times.

Maureen