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Living with Polyneuropathy CIDP, GBS, & CMT

Recovery of GBS AMAN


#1

Hi, in March of 2015 I was diagnosed with GBS and later diagnosed with a variant Acute Motor Axonal Neuropathy or AMAN for short. My recovery has been very slow and very frustrating and I was wondering if any body who was had this variant or just GBS can tell me how long recovery is. By the way I’m 17. Doctors can not tell you a whole lot about when you will fully recovery or even if you will. Lately it’s been getting hard to live with this everyday. I’m young and I really want to do things that kids my age do instead of be stuck in a house or wear leg braces when I go out. Please any insight about recovery or ways to speed it up or new techniques of any kind I would like to hear about.


#2

Hi Ryan! I’ve been told with GBS that recovery can be anywhere between 2 to 5 years. So, some problems may get better with nerve regeneration depending on the damage done and everyone’s case is different. I’m not sure about the AMAN variant. My case was a milder one and I am 2 years out. Physical Therapy helped me tremendously. Is there a GBS/CIDP group that meets close to you? That may be helpful in finding out information.


#3

There is no group close to me that I’m aware of, but I’ll keep looking around, thanks


#4

Hi Ryan,
I was diagnosed with GBS in Aug 2015. I wasn’t able to walk or move much. I’m 53 now and a lot better due to physical therapy. Lots of meds for the pain but getting stronger all the time. Where in the country generally do you live?

Dave


#5

I was diagnosed in June of 2015, full paralysis, coma, in the hospital for three months. I’m now walking with a cane and while I still have to wear an AFO I’m still having nerve regrowth and muscles coming back under control. As I counseled someone else, patience is your friend now. I know it’s hard when you’re young and a year is such a large portion of your life but it’s necessary.


#6

I live near Los Angles


#7

I had almost the same conditions you had except for a coma. I was however on a ventilator for 3 weeks. I still wear AFO’s which is really annoying. I know I need patience but now that I’m going off to college it just getting started really hard to stay positive and stay patient.


#8

Hi Ryan, I hope that you’ve experienced a lot of progress since writing in. How unfair that a17 year old should get this but that’s life and it will make you stronger mentally.
I’m 76 and 1 1/2 years since my diagnosis with GBS. I can happily say that I’m 90% good to go. I’m still struggling with tiredness but the other things are too small to even mention.
Patience is a keyword here. If you can’t do everything you want to do, find other things that will suit your condition. Keep telling yourself that this is only temporary and will go over.

There are no quick fixes but supervised physio with a trained person who understands the condition is the best thing you can do. I began with three times a week, my body needing rest days in between, and now I’m down to twice a week.

The rest of the week is house work, grocery shopping etc. which is also training.

Although I’m no expert I would think that the younger you are the quicker your body can get back to normal.

Try to think positively and concentrate on what you are achieving, not what you can’t do at the moment.

Positive thinking definitely plays an important part in your recovery.

Good luck and keep us posted.


#9

Hello Ryan,

I got GBS about 1 1/2 years ago. The usual symptoms, I had the pain syndrome for a couple of weeks, it then went away and completely pain free since. I lost all muscle tone, required a walker etc. Since then, with physical therapy ( the most important thing you can do!), I went from being unable to lift 20 lbs. to pressing several reps of 190 lbs. My legs have mostly recovered, doing 300# leg presses from next to nothing originally. To sum it up, my gross muscle strength has mostly returned, but still a lot of work to do on feet and hands, and I have a tremor in my hands that is a pain, as I need to do one finger typing now, though I should do more voice recognition typing. Anyway, things are still improving, and I am walking fine without a cane. The strength in my hands has mostly returned, though not totally. I would suggest along with the PT, and OT(physical and Ocupational therapy), that you investigate EMS a proven therapy using electrical stimulation while exercising, for example plantar flexion and separately dorsi-flexion of your feet/ankles while getting the stimulation. A therapist can include this as part of the treatments and you can buy the EMS device for about $ 70 bucks to do it at home yourself.

Just trying to let you know that even a 68 year old man can recover, though, it’s never fast enough.


#10

I’m sorry I didn’t see your post sooner. I have AMSAN (sensory too). Originally Diagnosed April 2015, with regular gbs age 37, after horrible bronchitis for 2 months. I was an inpatient for 4.5 months in Connecticut…where there isn’t much help as far as groups or meetings.
There are 26 “Hospitals
of Excellence” that exceed quality of care for rare diseases specific to GBS. I’m trying to get to MN, where there are 2 (including the Mayo clinic) as that is where my brother lives.
I want to be honest with you, but Im ONLY speaking from personal experience. You are young, and yes we are all different. all we can do is share information to help each other and spread awareness that there are a percentage who stay disabled. My neurologist says my nerves are severed in areas (not just damaged) and states I have reached max improvement. To quote him, he doesn’t want me to give up hope, but…
And Im not! I cant!!! especially since this recent cold that cleared up but lead to exacerbated symptoms for 3 weeks now. STILL! I have to say, I’m miserable most days since with pain, weakness and achiness., and different upper back pain that I will be asking about injections for.
I don’t understand why he won’t give me a second round of ivig!!! Would it not help because of the poor condition that my nerves are already in? Anyway, I’m desperate for help. :disappointed_relieved:.
That being said, I’m told I have a really good attitude about it. I have a lot to still look into…maybe stem cell research or becoming part of a study-(NORD). Currently, He has me tapering down from 2700 mg of Gababentin to be replaced by Lyrica and cymbalta. I get the most relief in water, floating g in the tub, sometimes 3x a day. By no means am I trying to bring myself down, and especially not anyone else…it’s just, since this flare up or relapse…whatever it is, it’s unbearable.
I’d like to hear back, maybe we can keep in touch honey, stay strong! I see a psychiatrist next week.


#11

Ryan

I hope that your recovery over this past year has continued steadily onward.

I was 17 in 1983 when I was diagnosed with GBS. I was intubated, and in intensive care with nearly every variant, 8 days from onset of my first symptom. PE was an extremely experimental treatment at that time, and I was lucky to receive it, beginning on day 9 and receiving 21 treatments over the next 4 weeks. I spent 2 months in hospital and 6 months in rehabilitation during my senior year of high school. It was frustrating and discouraging at times, but I just got up each day and tried to move forward. All my old friends left me behind, but I made new friends. And now, more than 30 years later, I can say that I have been able to do everything I wanted to try. It is not always easy, or without pain, but there is not much in life gained without experiencing both.I have not had the life I thought I would have back when I was 17, but I could not have imagined then what a tremendously fulfilling life was waiting for me. Believe it or not, I would not change things, even if I could. I am happy and proud of the person I became, and that is partly because of what I have been through with GBS.

I hope that you have found a support system, new friends and a new exciting experiences on your journey so far. Life is what we make of it, Carpe Diem!


#12

Try alpha lipoic acid or r lipoic acid 600mg if you dont have heart issues. And take vit d3 even if you are normal on the low side of normal.