I’ve been living with GBS since 2005

Hello and Welcome to the Family,

I am sure other seasoned Vets of these forums will answer you soon. My husband had GBS/CIDP and he had axonal nerve damage which prevented his ever returning to work. He was diagnosed 1/01/01 but had a rapid decline preceding the weeks before that. He developed GBS/CIDP from the flu vaccine.

He never fully recovered due to the severity of his nerve damage. He had IVIG treatments and took Darvocet and Neurontin for his chronic 24 hour a day pain which was with him for the 6 years he had this syndrome. He also had drop foot in both feet, but his right foot seemed worse. He had AFO’S Molded for his legs and feet, but he hated them and most of the time didn’t wear them. He did PT and OT on and off for the 6 years.

Everyone’s case is different and healing time is different for each person.

Have you had Physical and Occupational therapies? Swimming therapy is another one that is good for you too.

Take care and Wishing You The Best. 🙂 🙂

Hi Don and Emily,

Welcome to the forums and to our GBS family. Each of us reacts very differently to our treatment, rehabs etc. Some of it has to do with our age, physical health prior to GBS and how quickly treatment was started. The myelin sheath around your nerves regenerates very slowly once the actual attack has stopped. If you have axonal damage the process is even longer.

In my case I am at 30 months and I went from paralyzed up to my belly and unable to walk, to a wheelchair, to a walker to now walking unassisted. I still have alot of numbness and pain mostly in my feet but am happy to be where I am at. Now I was 33 and in decent health when I was stricken.

The best advice the people on this site gave me was that GBS is getting better slowly. don’t overdo and allow yourself ALOT of rest. Gradually the stamina and strength returns but it can’t be rushed.

Follow the advice and treatment plans your Dr and PT’s give closely and keep coming back here for information, we are all here to help you. Take care.

Jerimy

PS-Where in Pittsburgh do you guys live, I am ex-burgher who lived in the North Hills.

Welcome Don and Emily,

Sorry you need to find this site, but glad you did.

A word of encouragement – I was diagnosed with axonal GBS in 2003, had partial paralysis in both arms and hands, one vocal chord, and could stand, but not walk without assistance.

Although I still have some residual problems now, the big problems have resolved. Yes, we all say GBS means “getting better slowly”.

I was told by all 6 of the neuros I consulted and by most of the literature that by 2 years after onset, I had recovered as much as I was going to do.
This fortunately turned out not to be true. I am still seeing improvement nearly every week – no longer the big steps like when I was first healing, but definite progress.

The best advice I can give is to get PLENTY of sleep. I still sleep 12 hours a night, and am convinced that this is one of the reasons I have continued to heal. I listen to what my body needs, and I do it.

Be patient with yourself and never quit expecting improvement.

Best wishes for your recovery.

Hi Don and Emily and Brandy and Jerimy. I was treated in the same hospital and was told of someone that had GBS a few months before me. I am glad to hear from you Don and set you an email with my phone number if you want to call. I am South of Pittsburgh in Bethel Park. I have met several people that live in my community that had GBS in the last decade…each case was different and so was the effects they were left with. Emily you can call me also. Will be interesting to see if you have the same doctors that I had. Your nurses remember you! I am still waiting to hear from someone else from Pittsburgh that can answer questions too! Jerimy nice to hear you are from the “burgh” small world! Keep In Touch!

One of our member’s from the old forums named Ellen is also from Pittsburgh.

Kit,

I was born and raised in Ann Arbor and then moved to Pittsburgh to ride the Internet bubble in 1999-2002. I would like to move back there again someday, I really loved it there.

Jerimy

Exactly who I was referring to. At the time I contacted her she was unable to correspond. I am hoping she contacts me soon!

Don,
Just a year since you had GBS/CIDP, well I think you are doing very well. I came down with GBS/CIDP in March of 2002 & was told I would never walk again or get any use of my hands back. The doctors always talk about the 2 year window of healing, but we here all know that is a bunch of bull. I had a very severe case of CIDP & saw most of my improvements happen after the 26 month mark.

I sat in a power wheelchair with no use of my arms or legs for all that time, then felt strong enough to try walking again the summer of 2004. I began with a walker for a few months, then two canes, now I use a cane when I go out, but not at home. I have almost all feeling back (once had none below the neck), & about 80% use of my hands. I just wrote out all of the grad announcements for a relative, & spent two hours sewing yesterday. I attend water aerobics twice a week for an hour in a regular class at the YMCA here. I drive there by myself, after having a 3 year medical revocation. I did have to retest, but that is all part of getting our lives back.

I have so much more feeling back in my feet than I did even just a year ago, the last part of my body to have numbness. As others have said, I can’t stress enough the importance of patience in this illness. Also the importance of rest. Fatigue continues to be my biggest enemy, but I cann rejuvenate if I get even a one hour power nap. Now if I could just stay home one day & listen to my own advice. I guess I am just too busy trying to play catch-up for the time I lost. BTW I am 52, so not all that young anymore.
Pam

The one thing that everyone in the hospital and rehab has told me over and over is to make sure I get my rest daily. I have found that I can get tired from just taking care of myself during the day. I can do nothing and try to catch up on physical strenght and have what I call a very mental exercise day and that will also leave me fatigued. So just not rest and sleep but also make sure you turn off your brain and try not to think of things the same way you did before. What do I have to do today, but change that to what am I able to do today. I found my list is always longer than what I actually can get done each day! I don’t think that we can warn each other to not over do it each day! So important for our bodies to heal.

I agree with Don the muscles just do not come back as fast as we would like them to. I was very strong physically before GBS and now a toddler can do more things than I can do with their strenght. I had told the doctore all my weight loss was my muscles and he told me that they were still there they just had to get their strenght back and that would take time! That Doctor was the same Doctor that you had Don! Emily Thank you for the nice e mail it made my day! I would be interested in hearing more about the person from Somerset that also had GBS..and how they are doing today!

I am amazed at one thing in this whole group….after what we all have been thru…YOUR ATTITUDES are great! Many caring people live here!