Be Encouraged

Talisa, GBS, by definition, reaches the point of maximum weakness in eight weeks or less. Then strength should return, but it may take one to three years to reach maximum recovery. Recovery may not be 100%. During recovery, there may be setbacks, but these are not necessarily relapse, which would suggest CIDP. A true relapse is a renewed attack on the nerves which causes persistant loss of strength. A short-term setback can be caused by over exertion, but this is not a relapse. Only a neurologist can make the diagnosis between GBS and CIDP. Sometimes there is uncertainty. I was originally diagnosed with GBS, but this was changed to CIDP as the disease progressed.

I had two five-day rounds of IvIg, which failed to arrest my progressing weakness. Then I had several treatments of plasma exchange, during which I started recovery. I have been on a recovery path ever since, assisted by medication.

When you say your condition has “lasted so long,” what, exactly, do you mean? When was your point of maximum weakness after onset of symptoms and what has been your pattern since then?

Hi there!

I am 11 years post GBS and I still have residual weakness. I am able to walk unassisted but I move slowly. My legs still ache sometimes. Take a couple of Tylenol and that helps! I’ve just accepted it and moved on. I’m glad GBS is part of my past. I was on these forums a lot years ago but now just pop in occasionally to see what’s going on! Life DOES get better and your body WILL improve but it will take longer than you ever expected! I am just so thankful that I can walk on my own and can do for myself again! Keep hope alive…it will get better!

Thanks for sharing!

did the plasma exchange really help GH?  would love to know …have tried 5 ivigs and don’t feel much relief…..after 6 months i am finally walking like a tired duck but my hands and feet are tinklie and sore…..love all these recent posting…keep it up.   cathe

It is impossible to tell how much difference a treatment makes in an individual case, because recovery can occur regardless of treatment. In my case, I was continuing to lose strength after two rounds of IvIg, then I crashed to a condition of total paralysis below the neck. My understanding of plasma exchange is that it is indicated in such a case, so there must be a medical basis for it. But I doubt it would be ordered merely for persistant residual effects. Recovery from either of these disorders is not necessarily 100%, and there is a difference between persistant neuropathic symptoms and relapse, wjhich would be progresssive persistant weakness.

I was diagnosed at the end of June with CIDP and have 4 rounds of IVIG (Gammagard). Some have had better luck with different brands of IVIG. I have an IgA difficiency so I do not have much of a choice.  One of the rounds seemed to work early on but my neuro said my legs are getting weaker now so he just started me on 60mg/day of Prednisone last week. It seems to be helping with no side effects but it has been less than a week. I have to wait to see if we are going to continue IVIG in addition to the Predinsone.

Hi I was diagnosed in July 2015 and had PE (2weeks) in hospital followed by 1 month of acute rehab then 6weeks subacute rehab. I came home with a walker and after 2 weeks began using only AFO’s. Began riding my bike and walking unassisted late summer 2016. However my hands are not progressing as well. My dx is AMAN GBS which means I have axonal damage. I been told that my recovery is going well but, I have periods of anxiety. I’m curious to know how much you have recovered. I’m blessed to still be here.
Ron

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I was diagnosed early February 2016 and am still recovering as well, except it’s been changed to CIDP due to the relapses and plateaus I’ve experienced. When I first went to the ER, they put me on IVIG for 5 days right away. Symptoms progressed. Two weeks later, they tried plasmapheresis, which filters out the IVIG too in the process. I regained mobility in my left hand after the third treatment only to lose mobility again and the two treatments after did nothing for me. GBS claimed my respiratory system and I was ventilated and eventually trached in early March. I became paralyzed from the neck down. Throughout my recovery I had multiple IVIG treatments, steroids through IV, and tried Prednisone with no success. GBS just had to take its course. Once I started regaining strength in late April, IVIG treatments finally started to help speed things along. I experienced relapses where I lost mobility not due to overexertion. I also kept experiencing plateaus in progress until the next 5 rounds of IVIG treatments each month so I was finally put on Prednisone in addition in mid-November and it is the reason why I’m walking today. I’m tapering off the corticosteroids to the point where I won’t experience the side effects. I still receive my 5 rounds of IVIG monthly.

Jamie