I was diagnosed 1month ago, 5 day IVig treatment ended 10/19, entered inpatient rehab 10/22. 11/4-feeling pain in back, burning in feet, odd tingles in hands. Improvement seems to be happening bilaterally, is this normal? Also, neurologist started a IV dose of steroid (1dose/wk/500mg) and prescribed an immune suppressant (azathioprine/Imuran)?!? Very nervous about these! Can’t find any info online linking this new treatment to GBS recovery, so wanted to ask the experts! Please let me know your thoughts! Thanks!!
There is some evidence that IV steroid could be helpful but the studies that I saw a while ago didn't make me think it'd be something I'd agree too (not convincing enough on the benefit end) -- but nothing about what I read made me nervous. However, oral steroids studies have shown can actually be harmful for GBS (paradoxical to most autoimmune disorders). My doc tried a 2 week run of oral Prednisone that messed up my recovery and took many months to recover from (and still haven't fully). So if they prescribe oral steroids like Prednisone I'd look at the studies and discuss it with the your doc in depth.
Not sure what you mean by bilaterally, but improvement is very peculiar and individualized. As long as you are improving, you're good, in my view! It's a wild ride.
Thanks for the info! I discontinued the IV steroid after 1st dose bc it made me feel terrible/weak the next day. What I meant by bilateral is that currently my right arm & left leg/thigh show more strength & movement than my left arm & right leg (improvement is diagonal)…it’s crazy! I’ve heard that improvement in the legs/ feet are the last to happen. Is that typical? I first felt the tingling symptoms in my right foot, so will it be the last to wake up? Have you ever heard that?? I’ve read so much contradictory info online, that I just don’t know what to anticipate or expect. This is a wild ride, & I can’t believe there are so many unknown answers when it comes to recovery.
Nostrmos last statement could not be more accurate…it is a WILD ride for sure. I am 3 1/2 months into recovery. I was only treated with iVIg and nothing else. My neurologist had extensive experience with GBS and he was pretty firm with his plan. The pains come and go side to side, sometimes changing daily. My feet still hurt but you do get used to it. My legs are getting stronger and I have now gone from wheelchair to walker to cane. Still no balance and reflexes will not come back. My biggest issue is my hands. They were the last to go numb and hurt. They feel very stiff, sore, hurt and no dexterity. Neuro says last to get symptoms will be last to heal. There so many weird things that happen and each person is different. My oddity is my fingernails grow at an excellerated rate, have to trim every week…just bizarre. I lost some hair but that subsided. Flip side is my vision Improved dramatically in one eye for no good reason and I am now taking 1/2 the dose of BP medicine than I have for 20 years. My GP just shakes his head. Exercise is the only real good treatment for me. I tried supplements and some vitamin both of which I found in blogs. Neither showed me any signs of improvement. And I will say I really felt frustrated until week 12. Things really perked up. Still a long way to go but I feel like things are turning around. A lot more good days than bad ones and you will have those for sure…good luck.
Thank you both for this insight! This is the only place online where I’ve been able to find straightforward, legit information! I hope doctors study the knowledge/info on this forum! My GP was clueless too, & we’re worried that his delay in prescribing me IVIG treatment may be a cause for a slower recovery. I had zero arm & legs when they finally admitted me & began IVIG. Not much we can do about it now, but wondering if a 2nd round of IVIG treatments would be beneficial in helping w/ recovery. From what I’ve read, it helps…but who knows?!?
Insurance won’t cover IVIG unless I’m admitted back to hospital…Crazy thing is that I’m an inpatient at rehab facility that is part of the hospital! The buildings are literally connected to each other.
My treatment was delayed too, unfortunately the circumstances led me to be admitted, dismissed with instructions to inform my local volunteer EMTs that I may have GBS and could develop breathing problems, then readmitted <36hrs later. Fortunately, I was admitted to a different neurology group (academic) who diagnosed me and started IVIG immediately. I often wonder if my symptoms would have been less had they treated me to start with. I am just beyond a year out and it has been wild. What I learned is that you cannot predict what will come back first and what won’t. It is also difficult to predict the extent of recovery. Excercise is key to recovery, but it is important to balance excercise and rest. If you get too worn out, you may have what feels like a setback. I am still learning to balance rest with activity and exercise. I teach nursing school, while steroids used to be a common treatment, it is no longer considered part of the treatment course. If your dr wants to try steroids again, I would ask for a second opinion. I am still amazed at how many people in healthcare really don’t know anything about GBS. I often have to describe or explain it. Finally, what I have learned is that physical therapy in the water is ideal. Best wishes to you as you recover!