Jaimerz68
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February 2, 2017 at 9:25 pm
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
February 2, 2017 at 9:13 pmI also receive my monthly IVIG treatments of 5 days. My insurance covers home health so I have a company I work with that sends a nurse out to my home to administer the IVIG.
February 2, 2017 at 9:11 pmIn my case, I started a high dose of 70 mg/day in mid November. I saw immediate improvement in strength in my legs and it jumpstarted my walking. I began slow tapering doses after a month or two. I’ve experienced weight gain, bloating in my stomach area, swelling feet when I’m vertical, the round face, acne, and insomnia. I gladly take the side effects to be able to walk again! We’re continuing the slow taper to get to a point where the CIDP is controlled, but no side effects occur.
January 6, 2017 at 5:25 amHi Ariel,
What a beautiful name you have! I’m 28 (actually 29 now because today is my birthday) and I was diagnosed back in February of 2016. I had a pretty bad case, but I remained positive. I am very blessed to be surrounded by such supportive people in my life. I also found this site helpful as well as meeting people with the same affliction through FB pages and Instagram. I even met a couple of people in person who had GBS and are now fully functional. I know some days are harder than others, but focus on what you CAN do. You were once paralyzed and now you’re moving again. Your chances of a full recovery are very high due to your age. I’m still recovering and just starting to walk again with a walker. If you’d like to know more specifics of my case, you can go to Jamiegbs.blogspot.com. I focus on the positives and consider it a blessing that I’m alive. It’s a chance to relearn everything again from feeding yourself, brushing your hair and teeth, to walking again. I find that really interesting and find a new appreciation for it all. If you’d like to talk more privately, I’d be happy to give you my email address and phone number. Stay strong and positive. You WILL get back there, physically. When I look at myself, sometimes I become unhappy because of the weight loss and flabbiness from not using my muscles. I used to be really active and fit so this has been a huge adjustment for me. It just motivates me more to work hard once I’m more capable to get back to all of that. One day at a time. I started this book called ‘Mind Over Mood’ Second Edition by Dennis Greenberger and Christine Padesky that a friend had recommended and I’m finding it to be extremely helpful in dealing with all the emotions that come with GBS such as but not limited to depression, anxiety, sadness, and anger. It’s been such an insightful book of growth and being more self-aware thus far. – Jamie
December 3, 2016 at 12:05 amHi catdawgs,
I’ve recently started this book called ‘Mind Over Mood’ Second Edition by Dennis Greenberger and Christine Padesky that I’m finding extremely helpful in dealing with all the emotions that come with GBS/CIDP such as but not limited to depression, anxiety, sadness, and anger. It’s been such an insightful book of growth and self-awareness and may be useful to you. We are all here rooting for you. It’s certainly a very difficult situation for everyone involved and we usually lash out most around those we feel closest to. Prayers that you find healing.
November 4, 2016 at 9:41 pmHi Lori,
Have you looked into other possible treatments such as plasmapheresis? It’s a little more invasive than IVIG (requires placement of a Quinton catheter), but I’ve heard success stories with such treatment when IVIG fails. As you already mentioned, we all travel a separate path. When I first showed symptoms in early February of this year, the doctors decided IVIG was the first course of action. It did nothing for me and I declined further. A couple of weeks later, they tried plasmapheresis with little improvement. That kind of defeated the whole purpose of IVIG since it was inevitably filtered out of my system. With IVIG, sometimes people don’t report immediate results. It may take some time to become effective. I ended up on a ventilator in early March and the disorder eventually plateaued. During my recovery process while on the ventilator I received a handful more rounds of IVIG treatment with no results. I was also put on Prednisone for some time. Still, no results. I eventually stopped Prednisone after a while and slowly started regaining movement in my upper body. When I had a mini relapse in late July, I started IVIG again and saw immediate improvement within a matter of days. Since then, I’ve been receiving monthly treatments and have seen huge improvements each time. I’m hopeful and confident that I’ll walk again. Speak with your neurologist to consider alternative treatments. Be very vocal and advocate for yourself. Don’t lose hope! We’re all here rooting for you! I hope you find something that works for you. Keep us updated!
September 30, 2016 at 3:38 pmHi Trevor,
It sounds to me that you may have the chronic version of GBS, CIDP.
September 21, 2016 at 7:49 pmI received PE early on and it did nothing for me. I had a mini relapse several months after starting to recover due to an infection I contracted whilst at the nursing home and received a round of IVIG with an aggressive antibiotic regimen through IV. I showed signs of improvement quickly thereafter so I don’t know which worked. In any case, I’m due for another round of IVIG treatment next week, but also talked to my doctor about considering PE again. I did get another infection recently, but didn’t relapse this time so maybe the IVIG did help after all. Thanks for your input, Jim.
September 20, 2016 at 2:40 pmWas there anything done for your hands? I’m experiencing wrist drop on my left arm and what looks like Dupuytren’s contracture on my right hand. I’m wondering if anyone has had similar experiences and can offer some insight?
September 20, 2016 at 2:31 pmAm I missing something here? At what point is GBS considered CIDP? I’ve read the booklet Jim generously provided and see no difference in tests for GBS. It’s a bit confusing to me as I’m still stuck in a nursing home unable to walk. My toes are starting to wiggle just a tiny bit, but this is after 7 months from the first onset of symptoms. Thanks for any input in advance! I hope everyone has a great day and continues healing.
September 5, 2016 at 4:57 amHi Vicky, I do recall that I had a sensitivity to light and sound during my progression with GBS. I had to have three different signs up reminding all caretakers to use indoor voices or whisper because it was too painful to my ears. At one point I experienced a ringing in the ear along with sensitivity to volume. It gradually subsided end went away on its own maybe 4-5 months after the onset of GBS. Hope this helps. Wishing you all the best!
August 12, 2016 at 4:37 pmThank you for your input, GH and Eric! I’m lucky that I have a great team of PTs and OTs who understand my limits and take things slowly. I will keep what you said in mind for when I start walking again, Eric! How long did it take you to recover? It’s been 6 months and I still haven’t regained movement in my legs or feet. I’ll be receiving monthly treatments of IVIG since it seems to be helping now.
July 29, 2016 at 7:25 pmJuly 25, 2016 at 12:44 amI had a nurse tell me that an older gentleman with GBS said he started getting better when he felt a hot burning sensation inside his body and he felt pain. The same thing happened with me. If your brother or your family ever have any more questions, I would lovely answer anything I can. I can send you my personal email if you’d like. Wishing your brother all the best and your family as well! None of you are alone in this fight!
July 23, 2016 at 10:04 pmHi, I’m Jamie. I’m currently in my 5th month with GBS and only started to regain movement in my hands a few weeks ago. Every case is so different so it’s difficult to put a timeframe on it. I’m 28 years old. Just make sure to help him with passive moveMemes to keeps his joints loose and prevent muscle contractures. They’ve tried electronic stimulation on my quads and calves without any improvement yet. It just takes time for the nerves to regenerate. I’m definitely improving and getting stronger every day. Make sure he tries to exercise anything he can by moving. Even if he can’t physically move his extremities, it helps keep engaging the mind by thinking about movements. Does he get PT and OT?
