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Living with Polyneuropathy CIDP, GBS, & CMT

Aggressive form of GBS


#1

My son who is 26yrs old was diagnosed on Oct 28 2015. He received IVIG treatment right away and responded well. Left the hospital 6 days later under his own power to only have it come back 36hrs later and it has progressed to where he had to be put on a ventilator. It eventually took over his entire body and he was only able to move his eyebrows slightly. He had a total of 10 bottles of IVIG a week apart. Then was transferred to UCSF for plasmapheresis a week later. He has been able to open his eyes now and move his mouth a little. He now has a trach and a peg tube for feeding. Neurologist is now doing another round of IVIG in hopes of it helping. Has anyone here ever had this severe of GBS? If so I would love to hear you story. Looking for a ray of hope.
Thanks, Frank


#2

Hello Frank
My gbs was very aggressive, from onset to total paralasys from the rib cage down took about seven hours, however I was started on plasma pheresis immediately upon admission to the hospital, and the progression stopped.

Was in the ICU for nearly three months then I had six months of intense physical therapy, at first just to learn how to move my legs again, and eventually walk, run, ski…everything I did previously only different. Gbs kills nervous tissue. It does regenerate but very slowly. Your son will have to learn to fire muscles using dormant and damaged neuro pathways. And because of the damage caused to the peripheral nerves, when he does recover, his balance will be highly dependent on visual reference planes, so he will need night lights to avoid falling.

I wish that I had something more to inspire hope, but all I can tell you is that people do recover from gbs, and many like me go on to lead a reasonably normal life.

I will say that drive and determination will have a tremendous impact on his recovery, and it is a very long recovery process, so no matter how painful the recovery is, don’t let him lose hope, he can eventually do all of the things that he enjoyed prior to this disease.

Also, if this is a result of a vaccine, as a lot of gbs is a result of, the drug manufacturers all contribute to the federal vaccine injury fund. So many vaccines have been positively linked to gbs that the supreme Court required the drug manufacturers to contribute to this fund, and although you will need a good attorney with experience in this field of law, the medical bills are going to be enormous. If you need, I know an attorney who has experience with this.

My prayers are with you and your son
Charlie


#3

Thanks Charles. That’s the most puzzling thing. He didn’t have anything wrong with him. No vaccines, no flu shot, no virus or any bacterial issues. Drs are puzzled as to what caused it.


#4

Frank,
I had a very aggressive type of gbs, caused by a dr who didn’t believe me when I told him my hands and feet were going numb. Sent me home with Gabapentin and Tramadol. But through the night paralysis hit my whole body. I was admitted in Mar 2011 within a matter of hours I was fully paralyzed could only move my eyes. Was b put on life support for 5 mos. 4 mos of therapies. One thing that I had was double vision and my eye dr that I worked for came in and did vision therapy with me. Tapes on the outside of my glasses relieved my double vision, 2mos later only one tape needed on worse eye, approx 1 month later tape was off and no more double vision. The paralysis in the face takes time. I couldn’t talk or swallow and needed feeding tube for 4 months. I understood everything around me though it was frustrating to try to communicate. I had to use pen light to point to what I needed. I found I could click my mouth inside to get nurses attention. Drove them nuts! I’m so sorry about your son. I need to tell you that the most painful time is when the peripheral nerves are trying to heal. It helps to not touch him, when nurses roll him over, have them use a towel. Use soft sheets, soft blankets etc. Soft lotion massage also. Keep lights low, and less noise, you have to understand that everything is hyper hyper sensitive. As you can see by this typing I am better, as it has been 5 yrs now. Let me know if I can h elp you more! Roxanne


#5

My Dr. didn’t believe me either Dreamrroxx when I told them I was losing feeling in my legs and hands and could hardly walk. They even thought that I was faking it when I lost my ability to speak clearly. I don’t know about you but that was terrifying to be experiencing this and have your doctor turn their back on you. Luckily, I didn’t give up and powered through. With PT, my double vision resolved along with the strength everywhere else in my body. After 2 & 1/2 years, I have recovered tremendously with great PT and now a supportive Neurologist. Although my case wasn’t as severe, I did experience the pain with the peripheral nerves trying to heal. It did heal (and I believe continues to) and the pain resolved for me. I am able to work out with weights now and run again. I hope Frank is doing better! Here’s to a new year with positive medical care and big strides with recovery!


#6

I guess I was lucky because the ER doctor diagnosed my GBS when I couldn’t walk (second trip to the ER in two days). I had IVIG and then plasmapheresis as a follow up. My case was very severe, complete paralysis, and complicated by ARDS. I now think I was also lucky because they placed me in a medically induced coma so I didn’t have to handle the worst pain (although I can testify that you do still feel pain even in a coma) or the frustration of not being able to move. Speed and degree of recovery seem to be linked to how soon you get treatment after onset. Three months in the hospital, one month in the therapy ward included, and four months of outpatient therapy. I’m a little over a year and a half out from diagnosis and while I still have one foot that hasn’t recovered I can walk and do almost anything I want and I’m still having occasional nerve connections continue to be made in my bad foot.


#7

Hello, my name is Poppy and my dad (63 years old) has been diagnosed with GBS. On Christmas Eve I called an ambulance for him and on Christmas Day was taken to the ICU; he has been there ever since. I know we are in for a very very long journey. The consultants have said that it is the most severe case of Guillain- Barre that they have seen. When they did the EMG it was found that his nerve damage is “severely severe”, as in, instead of attacking the myelin sheath, the GBS has damaged the whole of the nerve, all of the way through. A week later he faced another complication with his bowl and liver and was taken down for emergency surgery (we were told to say our goodbyes as the surgeons did not expect him to survive). We have now been at the ICU for 3 weeks and I wanted to reach out to a community that already knows far much more about this treacherous disease than I do. My dad is currently still critically ill, but stable; he is on a ventilator and a kidney machine, along with a host of painkillers, and heart medication. They have managed to bring him off the sedatives- but he is just not waking up. He is also entirely paralysed… sometimes he can lift his eyebrows slightly, but at the moment he can’t even open his eyes. I just wanted to throw some questions out to you all: 1) Has anybody else’s EMG result come back stating that their nerve damage is categorised as ‘severe’? 2) Did anybody experience either their loved one or themselves really struggling just to wake up- even though the sedation has been lifted? 3) What can I do for my dad? I don’t know if holding his hand, or stroking his arm is causing him pain?! Any advice on what I can do for him would be so appreciated- I feel so very helpless. If you have got this far in my long rambling message then thank you! I am desperate to hear from this community, and look forward to a reply.


#8

Hi Poppy! I am so sorry that he has had such a severe case. I had a milder case but I have met others on this site who experienced more severe cases where they were on ventilators and could not move in the beginning. I have heard of them saying that they were aware of the family member support and their presence but could just not respond with their bodies. I hope that you will get some feedback from others. I do know that the support meant more than anything to me. It gave me strength when I had very little on my own. I’m not sure about pain with holding his hand or stroking his arm. Light massage helped me but I had a milder case. GBS is terrifying but recovery can be amazing even in some of the worst cases. I hope that he is getting good treatment and will start to improve soon! Stay strong!


#9

After I had come out of my coma and talked to people for a while I realized that I had incorporated things I had heard while unconscious into my coma fantasy world. I would advise you to talk to him and give him reassurances that things will be all right.


#10

Hi Poppy, Tarhealing is so right that support, being there is very important. I too had damage to my entire nerves (myelin sheath as well as the axon). I was totally paralyzed from my neck down. I was intubated and stayed in the ICU for about 2 weeks. I drifted in and out of consciousness. But somehow I knew what was going on. I could hear what was going on. My advice is to continue to support your dad. Remind him that his condition WILL get better. Road to recovery is hard and long so be patient. Good Luck and God Bless!


#11

Thank you all so much for sharing your own experiences and your advice! It means a lot.


#12

I am sorry to hear about your dad. Just take comfort in making every day the best you can. I would absolutely talk to him, read/tv/ or get audio books or music if possible. Whatever you think he would like. Talk about his loved ones, record messages from them to play, etc. Remind him of the things he loves to keep his hopes up.

I think for the pain, until I was out of icu and treatment I didnt get the hyper sensitivity. Mine was much worse on my hands and feet though, holding a fore arm would be a safer bet, less nerves. I never stopped for the pain holding something though. The burning, freezing, whole body pain, migraines in my neck, etc were so much worse than the sensitivity it just didnt matter.

The axon can be damages when the sheathing is damaged to much. Im 2 years past onset. i had less issues 6-12 months after the hospital than i have had from 12 months on. I was told my issues are from the nerve finally regrowing. So there is some recovery even with severe damage. I had total paralysis of some parts of my face. That nerve gives me the most pain without meds now, but i have full movement again.

So yes there is hope from complete paralysis with GBS. It might be a long battle, but from what ive read on this site many of the other diseases have worse long term issues.

Jeb


#13

A GBS Center of Excellence was recently established at OSU,which is close enough for us to drive to. So we went. The unusual thing waś the doctor, who had actually seen and treated GBS, and it’s routine and rarest forms.
My drs in Cincy diagnosed me with the Miller-Fisher variety, which is very rare and long to recover from.
After nearly 4 years of this, I decided to try some rather painful testing, (EMG and NCS) at the COE where it wás learned that I have the AMSAN version of GBS. The primary difference is that your immune system attáçks the nerve itself, instead of your Milan sheathes. The suggestion being that it takes longer to heal, and takes a different type of therapist.
I pass this on as a recommendation to find a local COE and present your case to them. I was unable to know much about them when I responded to you about a year ago.


#14

I had GBS hit me about 35 years ago. Had no vaccines or other things. But about a week before I had diarrhea. That is the only thing I could come up with.