I was diagnosed with GBS and had a round of plasmapheresis treatments. I seemed to be improving, but about 2 weeks into rehab, my progress stopped and I got progressively weaker. I had a second round of treatments and about half way thru was able to stand up on my own. I continued making progress until about a week ago. I thought I was just having a bad day but it's gotten to where I can't get up on my own at all. Does this sound familiar to anyone? Could it be something else?
It happened to me twice. I got sick, had my IVIG and could walk a little. Then I had a relapse in two weeks. The doctor said that the IVIG is temporary and it doesnt help to heal the nerves but they kind of stop the condition from progressing and not reach your lungs. I had to take IVIG again. There is no study that shows if ivig is better than plasma exchange or vice versa according to my doctor, but it is easier.
I got weaker again in two weeks after the second ivig and I was between two options either the plasma exchane or steriods pills. I decided to use the steriods because i learned that if i chose plasma exchange it will wash away the ivig i took previously. I took the steriods (prednisolone 60 mg as a start in the morning) for almost two months with PT and OT and i am currently walking with an elbow crutch and making progress.
Listen to what the doctor tells you, search, and decide on what you see best suits you. Try to have enough sleep at night as your nerves regrow little by little everyday. If you have some energy in the morning dont exhaust your self and keep it for PT or OT. If you can go out on a wheelchair try not to go for more than 2-3hours as it will exhaust your energy because you are not moving and you are overloading your brain nerves to think and observe the things around you. I have been listening to all these notes from my doctor every week. And always picture yourself at night before you sleep back home doing the things you love to do the most and you will get better soon. I have two little girls and i havent seen them in 5 months as I am taking my treatments in london but i always dream that i am walking with them by the beach.
I wish you all the best.
Stay strong,
Alya
Hi Kellaujoh - When I was diagnosed with GBS, plasmapheresis was like a miracle treatment for me - I couldn't believe the progress after 6 treatments. I was able to walk again, and it only lasted 9 days before I deteriorated again. Did a second round of 6 treatments, and progress was even better - was hoping GBS was in my rearview mirror. And again, it lasted 9 days. My body kept producing the attacking autoantibodies.
There are two things, there is GBS with Treatment Related Fluctuations - and then there is the possibility of Acute Onset CIDP (which is what I was eventually diagnosed with, and now I am on maintenance IVIG therapy). I would encourage you to speak with your neurologist, and if your neurologist is not entertaining the idea of A-CIDP, get a second opinion. I had to go to six neurologists before I found one who would even look at the medical journals I printed and highlighted. There are very specific things to look for on your EMG results, but a lot of neurologists dismiss once you say the word "acute" when talking about a chronic condition. The word acute is the qualifier for the onset, not for the condition. It can be frustrating. If it is GBS-TRF, you need to know that too. An accurate diagnosis is your best friend because then you can have an idea on what to expect.
My heart goes out to you. I know what it feels like to have tremendous progress, figuring this will all be in your rearview mirror, and to feel it all slip away as your ability to walk vanishes. If you ever need someone to talk to, please private message me and I can tell you anything you want to know about my experience, hoping it helps.
As far as the difference between GBS-TRF and A-CIDP, here are some links that I started my journey with:
http://www.ncbi.nlm.nih.gov/pubmed/20427754
http://www.nature.com/nrneurol/journal/v10/n8/fig_tab/nrneurol.2014.121_T2.html
Please let us know how you are doing.