First off, thanks to all the immediate “reach outs”. That is truly wonderful!!
My husband was diagnosed with GBS on Feb 14, 2014. Yep! Valentines Day!! He had lost all feeling in his feet and had spread to his mildly to his hands by the time the Dr’s figured out the problem. Initially thought it back related as he has had previous issues there.
He was in the hospital 8 days & received an IVIG treatment. He felt pretty good when released to rehab and did excellent there. He spent a week there, graduated to a walker and came home. They gave a week break and he started out patient PT last week. By Friday he could hardly stand. Much weaker than he has been through the whole ordeal. We saw the GP on Friday and he believes that he just overdid. His breathing is good and I do watch that. It is just so much more difficult to do anything than it was when he came home, it has been alarming. We do go see the neurologist on Monday am.
I guess my questions are:
Does this sound like a relapse
And are there any specific questions to ask the neurologist and
Is this common?
I have read many of your stories and his does not sound as severe as many, but the increasing weakness is alarming to both of us.
He is a “big, tough guy” who is typically the one doing for others. I haven’t even told him yet that I signed up here. He can do anything you know, tho I have made him rest more and backed off his home therapy for a few days. Is that the right thing?
Just looking for a little guidance of what is the best course to help him the most!
Hi Mary, I can totally relate to u. Like ur husband, my son was and is like ur husband. The difference is my son did not get any treatment. He went to the ER, they told him what he had and did all the test to confirm it was GBS. He got it in nov.2013 and even went to worked till Jan. 2014. They didn’t give him treatment because some how my son made it thru this syndrome. They said he is at his weakest and cant get any worst. Like ur husband my son was doing good too. But the only problem like ur husband is he gets tired too. His feet feels heavy. We made an appointment to see his dr., but we canceled it because he started getting feeling in his legs. The right one more then the left. He has start feeling on his stomach again. But still no feeling on hands ad feet. The doctor said that will be the last place to come back. Because when it started it was the first place it started. It has to leave his body. My son is a big guy too. His 6’2 and 265lbs. Big hawaiian guy. Like I said I can relate to u. Go see ur doctor but chance r if he doesnt have a fever and his heart and breathing is okay, they probably will make him ride it out. My son didn’t go to physical therapy yet. They want him to feel a little more then start therapy, that way they don’t want to hurt him.
Hi Mary, I can totally relate to u. Like ur husband, my son was and is like ur husband. The difference is my son did not get any treatment. He went to the ER, they told him what he had and did all the test to confirm it was GBS. He got it in nov.2013 and even went to worked till Jan. 2014. They didn't give him treatment because some how my son made it thru this syndrome. They said he is at his weakest and cant get any worst. Like ur husband my son was doing good too. But the only problem like ur husband is he gets tired too. His feet feels heavy. We made an appointment to see his dr., but we canceled it because he started getting feeling in his legs. The right one more then the left. He has start feeling on his stomach again. But still no feeling on hands ad feet. The doctor said that will be the last place to come back. Because when it started it was the first place it started. It has to leave his body. My son is a big guy too. His 6'2 and 265lbs. Big hawaiian guy. Like I said I can relate to u. Go see ur doctor but chance r if he doesnt have a fever and his heart and breathing is okay, they probably will make him ride it out. My son didn't go to physical therapy yet. They want him to feel a little more then start therapy, that way they don't want to hurt him.
Very sorry to hear about your husband GBS on Valentines day no less.
I had GBS in 2012. I am still struggling with numbness, foot pain, fatigue and foot drop. I have had several times over the last few years where I have felt like I have relapsed. I also have MS as well and I know that with all demyelinating disorders an increase in temperature caused by like feveror exercise can cause a temporary reoccurance of previous symptoms. This is called Uthoff's Phenomena. I find that although this occurs with GBS, CIDP and MS it seems only to be recognized with MS. Most neurologist are unaware that it can occur with GBS and CIDP as well.
What I have noticed is that unless one is totally paralyzed with breathing issues. A lot of the issues of GBS patients symptoms are dismissed, ignored, and poorly understood. Some people who become totally paralyzed seem to recover better than other people whose symptoms seemed less severe. So little research has been done on the later stages of recovery and residual symptoms. There is a myth that most people totally recover from GBS and this is just not true. The drama makes it look as if people have recovered, but the truth is, that people usual struggle with extreme fatigue, numbness and pain. This has some useful information. http://www.angelfire.com/home/gbs/residual.html
Has your husband had nerve conduction test done?
Also many people who are initially diagnosed with GBS actually have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) that was misdiagnosed as GBS. Good that you are seeing a neurologist ask about CIDP.
GBS is a huge assault to the peripheral nervous system which is everything outside the brain and spine. It can sometimes takes. years to recover. It takes most people at least 3 years to feel closer to the way there were before the attack. Some people even longer. I found for myself my healing was up and down. It is still a struggle.
The GBS/CIDP Foundation has great support and information can direct you to a support group in your community. They can also direct you to a neurologist who really know GBS. http://www.gbs-cidp.org/
Read everything you can especially medical papers on recovery. The book Guillain-Barre Syndrome: From Diagnosis to Recoverby Dr. Gareth Parry is a great source of information.
It has been just a month so your husbands nerves have not recovered yet.It will take a while before the muscles respond normally. Make sure the PT people really understand Guillain Barre Syndrome or they could e making things worse.
My friend was diagnosed with GBS in May 2013, received IVIG and was sent off to Rehab. He was there less than one week and his weakness, like your husband, was worse than ever. We insisted on a neurological consult and he was diagnosed with a relapse. Went back to the hospital and this time received plasma pharesis. Did very well with that, off to Rehab and near the end of the time there, just as we was transferred to a sub acute center, he experienced the same symptoms and was diagnosed with another relapse. Received plasma pharesis and the diagnosis was changed to CIDP. He went back to Rehab and had the plasma exchange once a week for several weeks and then was discharged. He was put on a regimen of prednisone (daily) and cytoxan (monthly) for 6 months and is doing very well----back to work and most activities.
My suggestion to you is that you pursue a CIDP diagnosis. Like you, we and the medical personnel were all chalking up his initial relapse, at first, to extreme fatigue and over doing it but after another relapse, the neurologist felt it was CIDP and he then improved very well. We did have to get a little insistent on the medical personnel’s following up of something going on because we just “knew” something was not right and we were not comfortable that it was just extreme fatigue, especially since it was worse than ever! My friend kept telling me that something was wrong and I am so glad that we listened to his body! So, I would go to the neurologist and talk to them about this possibility. It certainly is worth a try especially with what it sounds like he is going through. Hope this helps and my thoughts and prayers are with you!
Thank you all for the feedback. It is interesting reading all the experiences. His attitude is a little better this morning, tho physically the same. May put on the Comedy Channel today to maybe get his mind somewhere else.i know we are not very far into this journey from all I have read. I think we just thought we would move right along. He has had back & knee surgeries in the past, but never nerve issues.
Thanks again and I will be asking lots of questions in the morning!!i will update and so glad to know you are all out there!!!
My husband was diagnosed in 11-2013.. treated for 5 days with IVIG, then sent to rehab hospital.. was doing great...but overdid it and relapsed. .. spent 5 weeks in rehab hospital got couple more doses of ivig....came home in wheelchair, progressed to walker in 2 months and now to cane.... but it has been over 4 months time. From what i have read, the downward slide goes from 3-28 days, then a long plateau, then a long climb back up... my husband fits this pattern perfectly. My husbands attitude varies from day to day... at first he was really depressed, but as he progressed, that depression went away... He still goes to outpatient PT twice a week and works out on his own (walking in pool and recumbant elliptical machine) a few more times a week... This has certainly been a life altering event..but I feel we are on the upswing.. Hoping he can go back to work in the late spring... he sees his physiatrist again this week....
Very sorry to hear about your husband GBS on Valentines day no less.
I had GBS in 2012. I am still struggling with numbness, foot pain, fatigue and foot drop. I have had several times over the last few years where I have felt like I have relapsed. I also have MS as well and I know that with all demyelinating disorders an increase in temperature caused by like feveror exercise can cause a temporary reoccurance of previous symptoms. This is called Uthoff's Phenomena. I find that although this occurs with GBS, CIDP and MS it seems only to be recognized with MS. Most neurologist are unaware that it can occur with GBS and CIDP as well.
What I have noticed is that unless one is totally paralyzed with breathing issues. A lot of the issues of GBS patients symptoms are dismissed, ignored, and poorly understood. Some people who become totally paralyzed seem to recover better than other people whose symptoms seemed less severe. So little research has been done on the later stages of recovery and residual symptoms. There is a myth that most people totally recover from GBS and this is just not true. The drama makes it look as if people have recovered, but the truth is, that people usual struggle with extreme fatigue, numbness and pain. This has some useful information. http://www.angelfire.com/home/gbs/residual.html
Has your husband had nerve conduction test done?
Also many people who are initially diagnosed with GBS actually have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) that was misdiagnosed as GBS. Good that you are seeing a neurologist ask about CIDP.
GBS is a huge assault to the peripheral nervous system which is everything outside the brain and spine. It can sometimes takes. years to recover. It takes most people at least 3 years to feel closer to the way there were before the attack. Some people even longer. I found for myself my healing was up and down. It is still a struggle.
The GBS/CIDP Foundation has great support and information can direct you to a support group in your community. They can also direct you to a neurologist who really know GBS. http://www.gbs-cidp.org/
Read everything you can especially medical papers on recovery. The book Guillain-Barre Syndrome: From Diagnosis to Recoverby Dr. Gareth Parry is a great source of information.
It has been just a month so your husbands nerves have not recovered yet.It will take a while before the muscles respond normally. Make sure the PT people really understand Guillain Barre Syndrome or they could e making things worse.
It will get better but Good luck with it.
Clare
Clare your share helped me more than you know. Many thanks. I''m 17 months post onset and found your share comforting when you spoke of the recovery time.for many. I feared the fact that I seem to have plateaued. Hearing that many recover by year three offers me hope Thanks. Currently my neuropathy in my hands bother me most. I have the sensation that I mushed my hands in butter and its real unpleasant.
I am glad my post helped. I have done a lot of research and am now looking to find someone who will do a study on later recovery and peripheral symptoms of GBS here in Canada.
My feet and legs are the worst and my eyes still give me trouble but even my hand are still not back. It usually takes me three tries to make a telephone call with these my fingers. Keyboarding is still not accurate. Buttons and zippers and braiding my hair are still a problem.
Sonny, you have to be gentle with yourself. There is so much misinformation out there, even on medical sites .The average recovery time is 3 years. However, there are so many different forms and variants of GBS as well. Science knows more about black holes and the cosmos than they do about the nervous system. The more research I do the more I find that what 'recovery' means to a medical professionals, is different to what it means to a patient. I would actually move that recovery time to between 3-5 years.
If you can find yourself a fun hobby that uses your fingers that can helps speed things along. fly tying comes to mind, jewelry making, something that works those finger.
I am going to a GBS conference in May and one of the things I am going to be looking for is people doing research on the later part of the recovery process. I'll post what I learn on this site.
Clare My eyes feet and hands are exactly whats wong with me Lenny G
Clarebear said:
Hi Sonny,
I am glad my post helped. I have done a lot of research and am now looking to find someone who will do a study on later recovery and peripheral symptoms of GBS here in Canada.
My feet and legs are the worst and my eyes still give me trouble but even my hand are still not back. It usually takes me three tries to make a telephone call with these my fingers. Keyboarding is still not accurate. Buttons and zippers and braiding my hair are still a problem.
Sonny, you have to be gentle with yourself. There is so much misinformation out there, even on medical sites .The average recovery time is 3 years. However, there are so many different forms and variants of GBS as well. Science knows more about black holes and the cosmos than they do about the nervous system. The more research I do the more I find that what 'recovery' means to a medical professionals, is different to what it means to a patient. I would actually move that recovery time to between 3-5 years.
If you can find yourself a fun hobby that uses your fingers that can helps speed things along. fly tying comes to mind, jewelry making, something that works those finger.
I am going to a GBS conference in May and one of the things I am going to be looking for is people doing research on the later part of the recovery process. I'll post what I learn on this site.
We went back into the hospital this eve. He just kept getting weaker & weaker. Of course, Sun nite, so no personal neuro until tomorrow. The Dr did call me & told us to go on. He did mention CIPD. I will update as I know more. Thank you all!
Been a long week but finally back on a 2nd booster round of IVIG. The original hospital neuro kept making excuses and tried to blame my husband’s numbness & weakness on a possible neck problem. Very frustrating. The Neurosurgeon was saying “no, that is not the problem”. In the meantime we were checking out neurologists. We had to follow hospital protocol, but now have a non-hospital neurologist. Back on meds and we will go at this again. We do trust the new Dr and know he will send us somewhere else if needed. Our town is not huge. Too soon for any real news but will be watching & testing if he thinks this is CIPD. My husband is still somewhat discouraged and I do worry about that. I know!! We must have patience!!! Thanks for letting me vent!!