Setback or relapse at the 11 month mark? Desperate for help

Hello Everyone!

I can't believe that I just found this support group. I wish I had known about a year ago as emotional support is so important during this journey. I have been blessed with the most wonderful husband on earth, but even he can't understand how hard this is (as no one can, who hasn't gone through it.)

I'll try to be brief. This all started for me last year on August 26th and it drastically affected my legs. At my worst, I couldn't walk, stand, crawl and even wiggling my toes took all of my focus (and if I managed it, it felt like my legs were on fire.) Over the months I very slowly made progress, with setbacks, to the point that I was able to walk my neighborhood again (it's very hilly), pushing my wheelchair instead of riding in it. I could again drive, run errands and really look after my 5 children.

I pushed to the limit simply because I could, when suddenly three weeks ago, my legs just said "no more!" and I was forced back into my chair. Within a week, I managed to improve enough to walk the neighbourhood again, but I guess I pushed it because the next day they "went" again.

It's been 2 1/2 weeks since then and my legs are AWFUL again. They hurt (they feel wounded, not sure how else to explain it) and I am wholly back to being in the wheelchair full time or crawling around upstairs.

My neuro can't see me for a month! Has anyone had a setback after so much great progress? One that lasts for weeks? Is this a relapse? How can I have been doing so well and now be back so far? I feel lost and frightened.

Any responses would be appreciated! (And great to see you, Tarhealing! :)

Great to see you too, Blessedmum! Couldn't wait to respond. So sorry about your setback. Although my setback was different, I see similarities in the way this whole thing has worked for me. I hope that you will find others with insight who have experienced your symptoms and relapse. I know it is so frustrating to improve then backslide (been there done that!)

You will find lots of great support here! Take care & welcome to the group!

Hi Blessedmum! I will talk to you from the otee side Of the picture, as a Mom. My son was diagnosed with GBS at age 9, had IVIG treatment and never recovered completely, having a relapse on his 10th birthday. His neurologist was very confused and called it CIDP, he suggested we see an hematologist. I don’t think he knew much about GBS or CIDP, but fortunately the hematologist did. Go see an hematologist please!!! GBS/CIDP are neuromuscular neuropathies, but they are caused by an autoimmune reaction. My son was treated with steroids. I was scared at the beginning and wasn’t sure I wanted steroids for him, but then, I wanted to see him run again. He reacted within the first coiple of days. We started with 5 days of 40 mg prednisone, since it worked we gave him 9 more days and then started a weaning process, 14 days of 20 mg, 7 days of 10mg and then 7 days of 10mg alternating, one day he took it, one day he didn’t. Anyway, our new neurologist and the hematologist told us not everyone reacts to steroids, but what I do say is a must, is seeing a good hematologist. Maybe you can find one who will see you before one month. It’s so aggravating that doctors make you wait. I know how scary and frustrating it is. As a mom I was heartbroken. There is always a possibility he relapses, but I have my prednisone ready and I pray everyday for him to stay strong. I will pray for you too and please see a hematologist. I also learned you shouldn’t take supplements that boost your immune system, like echinacea and elderberry. Vitamin C and B are important. Also vitamin D, and food that helps you remielinize, like avocados, oatmeal, nuts…and exercise. Best wishes!!!

I have had relapse or whatever they want to call it…and I have issues with my right side mostly and my ankles and my feet are numb…I feel a little but a lot of pain. I have good days and bad but it will get better… I feel for you…I will pray for you!

Thank you so very much everyone for your quick and kind responses. This isn't a journey I would wish on anyone, but having support along the way is truly like a gift. I don't even know what to think anymore. I don't think it's the same "nerve pain" this time, it's like the ligaments/tendons deep inside my calves are very painful and don't want to work, which mke my legs unable to work. I can move my feet/toes in every way (I could never do that with the initial episode) so I'm still praying its another setback...but if so, it's a brutal one. I will of course ask my neuro about CIDP and ask about a hematologist,too! Blessings and healing to you all!

I say forget the Neurologist and go straight to the ER. If they diagnose a relapse, then you probably need the IVIG infusions.