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Living with Polyneuropathy CIDP, GBS, & CMT

Are relapses very common after recovering from GBS? What happens if you relapse?


#1

I was diagnosed July 2015. I worry I could get GBS again! It is very hard to find good information. About GBS. I am so glad I found this group !


#2

Hi Tammtbeach

I think this is the biggest fear for all of us. My condition started in May 2014 (Campylobacter), and steadily recovery since. Last month I had a visit with my neuromuscular MD who told me that the relapse (or CIPD) would have most likely happened in the first few months. He said if I did get again I would be 'unlucky' and that the 2 instances would most likely not be related. Of course this would be based on his research and patient history - I hope I am not one of the unlucky ones! I have seen many people on this site who have had relapses. I have not personally - sure some bad days where cramping is more or feet feel like they are tingling, but definitely not to where I was.

I agree, finding real 'medical' info is hard, but I think that is due to the severity we have experienced as well as the type (I was diagnosed with AMSAN vs. AIDP).

good luck on this 'journey'...know you aren't alone!!


#3

Thank you…I really appreciate all of the information! I also keep seeing posts about relapses and hope it doesn’t happen to me.


#4

Hi, New to the group and so grateful to have found it. I'm interested to find friends like you who have been going through it longer.?


#5

I fear of a relapse! I still get symptoms, mostly weakness in my thighs, but never full blown paralysis. It puts the fear in me. I try not to think about those things but you kind of have to to keep yourself safe and to keep everyone around you aware that this could happen to you again and you may need their assistance. My symptoms go away after resting. I am on a prednisone taper now and this seems to help keep my pain controlled. I was diagnosed 6 weeks ago, I have no health insurance but I was told to do physical therapy. Also, I find time to relax which helps the anxiety of this disease, by going to the gym, although there isn't much I can do there, except sit in the hot sauna! It works wonders for my body aches! Hope all of us never have to go through these things GBS has given us ever again! This group has helped me tremendously, you have an ear here! Makes it nice to know they are going through the same things. Take care!


#6

Physical therapy helped me very much! Helped strengthen my muscles and get my balance back! The thing that bothers me most at this point is my toes still tingling and hurting. I am hoping this goes away with time.


#7

15 years later I still have issues every time I get sick it’s never as bad as it was the first time obviously and I recover quickly but it’s very painful and can cause me to feel like I’m not able to walk. It’s always scary.


#8

Thankyou, Kevin, for your response. My niece got gbs 2 years before I did. She has had a relapse end of last year. She told me she went through a rough time yet it was not as rough as 2 years ago. It is good to know a relapse can happen yet we can recover from that as well.


#9


Hello everyone,

Im new to the group, and not very computer literate please let me know if i post in the wrong place.

I live in Australia and was diagnosed in 2009, it was a year until i could stand again, and i have never returned to baseline.

They say i have nerve damage in my left foot (to ankle height) and my whole right leg, and approximately a 3" strip around my lower abdomen and my right arm which stops midway between wrist and elbow, which is permanently, not paralyzed, but dead to the touch, hard pressure i can feel. if i try to wear shoes it sets off the nerves and takes hours to settle. I have episodes where my legs and waste are both paralyzed but seems to be predominant in my right.. When this happens i feel toxic like i have been poisoned. My blood work always shows a virus ..(kind of obvious huge red nose that runs and a lot of sneezing) .last episode being 6 days ago while in the hospital a Dr showed me this site and told me my" toxic" is relapse . I seem to be wheelchair bound every 3 to six weeks sometimes i get longer in summer i think 6 months was my longest break................. Does this happen to anyone else? I'm told this will probably never go away. I am no longer scared or frightened as i know i do thaw out and i have rearranged my life so i am not dependent on others to much, and my children can have a normal life as possible.It is very hard to get any straight answers here in Aussie, not even the so called specialists seem to know much.. But i do not let any of this daunt me i was a very fit athletic person in body and mind and i am pretty sure GBS can not throw any more surprises my way..I would love to hear from any "long termers" In my part of the world i am the guinea pig, Hospitals and rehabs use my experiences, timelines and do's and don'ts as guidelines for others .A few ask to see me, and i visit some in the rehab or wards, i know how important to people this can be as i had no none.

I hope this has not come out as a jumbled mess.

I am so happy to have found fellow GBSers.


#10

Hi Kayleigh I have just found your site about gbs, I live in England, I had gbs very severe and was in it’s for 9 months, and rehab for 16 months, have I got a story to tell you if you are interested. Hope to here bk still recovering


#11

Hi Moo,

Welcome to Living with Polyneuropathy, I’m glad you’ve joined us. Some of these posts you have responded to are quite old and the members may not be around anymore, but we are interested in hearing your story! Could you create a new post and share it? You can click the +New Post button on the discussion page.

Looking forward to reading about it, Moo.

CG


#12

I thought I would update my GBS. I haven’t posted for several months. My story might be encouraging among so much discouraging posting here. I got hit in March, 2017. Could not walk, numbness in legs, knees forearms. Right triceps completely useless. 9 months later, 75% strength back in legs, however, they are still numb from the knee down in the front. Right arm strength returning. I could not shower or sit on the jon without help from my wife for the first 3 months. Now, I am self-sufficient, working in the yard and on my boat. Just got off the 3 wheeler and back on my bicycle, albeit very careful when I dismount. I am being tested for muscle enzymes every 3 months to monitor them in case I have CIDP. So far my Neuro says it was GBS. There is hope for improvement in my case. I recently had another bad cold (my initiation to GBS was influenza A). I was scared it would hit me again after the cold. It did not. I am cautiously optimistic. Best wishes…


#13

I had GBS Miller Fisher Variant in 1992. Paralyzed for about 1 month. Double vision for almost a year. Plasmapherisis, steroids and physical therapy. Recovery was slow but did pretty well. Had some residual weakness but went on pretty much as before GBS. Never got a cold or flu until 2011. Within 3 days had GBS with Miller Fisher again! Not as bad as 1st time. Lasted about 1 month then slowly resided. 2015 got pneumonia and double vision and trouble walking returned. Nuero said it is now considered chronic and is CIDP. I am very careful now around sick people although I still work at a school. I always have feet tingling and balance and MS hug when tired. I also always have lip and chin numbness. It is just a part of my new me and I just go with it. Was on gabapentin but it caused short term memory issues not worth it for me.