Guillain-Barré Syndrome (GBS) Support Group
Guillain-Barré syndrome (GBS), is an acquired immune-mediated inflammatory disorder of the peripheral nervous system (i.e. not the brain or spinal cord). It is suggested that it is an autoimmune disease, in which the sufferer's immune system is triggered into damaging the nerve covering. Many cases developed in people who received the 1976 swine flu vaccine.
Hi, everyone...
I'm trying to figure out if some weird symptoms are GBS recurring, just lingering symptoms, or nothing at all! Sorry for wordiness.
I didn't join this group when I had GBS initially because I felt kind of embarrassed by the fact that I was getting off so lightly. It seemed like everyone had a much harder time of it than I did and I didn't want to complain about my far more minor issues! However, I have a question now and it's not like other people are going to have any clue about it, so...here I am.
I developed GBS after the worst URI I've ever had, the day before I had to fly back home. It was pretty weird going through the airport with increasing neuropathy! I'm really glad that my GP figured it out and sent me to a neurologist right away. Because it wasn't too bad, though, all I went through was a lot of testing and a lot of being totally miserable at home. I didn't have to do any of the treatments; we discussed gabapentin or something like it but I hung in there. I fully recovered about a year and a half ago, I guess.
I've tried hard not to get sick again since then, since at least for the first few months my neuro said it could slow down my recovery. It's not easy at my job. I work with a new batch of international students every 8 weeks, plus ever since I moved to the Pacific coast, I've gotten bronchitis after most colds. This week marks 2 years since I developed GBS and the first time I've had bronchitis since then, too, which I wasn't thinking about yesterday when...
I noticed some numbness and tingling, then pins and needles in my feet. I wasn't too worried because a) it's cold b) I take Topamax, which has "numbness and tingling" of the extremities as a side effect and c) I finished a 4000-mile road trip 3 days ago, so who knows. It didn't get worse over the day.
I woke up in the middle of the night last night to go to the bathroom, and when I tried to move my legs, it was like things were kind of off from my knees to my feet. I also felt some tingling in my face (but you know, middle of the night, who knows what was pinched). Still, this is when I got pretty weirded out thinking about GBS.
This morning, I think things are okay. (It's a little hard to tell about my feet.)
Should I do anything?
Has anyone had symptoms come back and then go away after 2 years or come back during an illness?
I know actual recurrence is incredibly rare, but I often seem to get the rare roll of the dice, so I'm a little worried about that too.
Thanks for reading my long post!
I'm trying to figure out if some weird symptoms are GBS recurring, just lingering symptoms, or nothing at all! Sorry for wordiness.
I didn't join this group when I had GBS initially because I felt kind of embarrassed by the fact that I was getting off so lightly. It seemed like everyone had a much harder time of it than I did and I didn't want to complain about my far more minor issues! However, I have a question now and it's not like other people are going to have any clue about it, so...here I am.
I developed GBS after the worst URI I've ever had, the day before I had to fly back home. It was pretty weird going through the airport with increasing neuropathy! I'm really glad that my GP figured it out and sent me to a neurologist right away. Because it wasn't too bad, though, all I went through was a lot of testing and a lot of being totally miserable at home. I didn't have to do any of the treatments; we discussed gabapentin or something like it but I hung in there. I fully recovered about a year and a half ago, I guess.
I've tried hard not to get sick again since then, since at least for the first few months my neuro said it could slow down my recovery. It's not easy at my job. I work with a new batch of international students every 8 weeks, plus ever since I moved to the Pacific coast, I've gotten bronchitis after most colds. This week marks 2 years since I developed GBS and the first time I've had bronchitis since then, too, which I wasn't thinking about yesterday when...
I noticed some numbness and tingling, then pins and needles in my feet. I wasn't too worried because a) it's cold b) I take Topamax, which has "numbness and tingling" of the extremities as a side effect and c) I finished a 4000-mile road trip 3 days ago, so who knows. It didn't get worse over the day.
I woke up in the middle of the night last night to go to the bathroom, and when I tried to move my legs, it was like things were kind of off from my knees to my feet. I also felt some tingling in my face (but you know, middle of the night, who knows what was pinched). Still, this is when I got pretty weirded out thinking about GBS.
This morning, I think things are okay. (It's a little hard to tell about my feet.)
Should I do anything?
Has anyone had symptoms come back and then go away after 2 years or come back during an illness?
I know actual recurrence is incredibly rare, but I often seem to get the rare roll of the dice, so I'm a little worried about that too.
Thanks for reading my long post!
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
But from time to time I will get as you experienced a weird sensation kind of like what your explaining . . I think since our nerves were damaged then restored we need to massage all of our limbs to help re-establish function... I'M not about this but in my case it seems to help.. I think trying to keep thinking positive mentally can help too.. ok by Keep telling your body to heal itself .. you know " Mind over matter type of thing " It can't hurt. but its something I have always done when i'm sick.. Take Care.. Jim
I had a lighter condition than many as well. Never lost control of my breathing. The pins and needles and fatigue had seemed to be diminishing until I got a cold and now the pins & needles are back in my feet and legs. I think that it has to do with the myelin on the nerves being thinner from the disease after being destroyed so I think stress or illness affects it. I'm no doctor. Just my thinking on it. Take care! Hope you feel better soon!
I am about 16 yrs recovered. I was one of those that was on life support for a few months. I do have times as well when I have tingling although mine is usually attached to extreme fatigue. Such as illness or "over doing it". I've even experienceed it with extreme stress as well. I so agree with the others, I think its just the mylelin damage. I take Neurotin otherwise known ad Gabapentin for my tingling and pain. It works wonders. I just recently had the flu again and did not have a relaps but I did get Bells Palsey from it (half of my face went paralyzed). I have been undergoing acupuncture for the last few weeks and I am almost fully recovered. You may try acupuncture for your tingling and weakness... It may help. If you symptoms get worse, you need to see your neurologist ASAP. Probably not a relapse, but if it is, the sooner you start treatment the better. Hope this helps!
If you have GBS, the earlier you begin treatment, the earlier you have a better chance of a full recovery. Your neurologist can run medical tests to determine if you have GBS or not. Make the appointment to go see your neurologist while you can still move your body.
I have been recovered for 3years now and have a 6month old son. I was a high risk prego due to my life long history of diabetes and the fact my gbs may be triggered to come back with my being prego. I am on lyrica for the nerve pains that i have left over from my bout of gbs. my pain is in my Feet mostly. My guess is from me being on them so much. But i do get pains all over. Every once and a while when i stress or get sick my legs will go numb and start to feel like i am rolling around on needles. It is normal but remember you know your body best and should listen to your instincts. So if you feel like you should speak to your doctor then do so.
Getting GBS to begin with is supposed to be rare, a recurrence among those of us who have had it may be listed as rare but I have talked to patients who have had full blown recurrences of 3 times! I take things carefully and do what I can not to get sick because I fear the rare recurrence. You are still pretty early in your recovery and things will definitely rear up and scare the tar out of you. I take a 'wait and see' approach when things are acting up. If it starts feeling a lot worse, call it in. Don't be afraid of feeling silly or wasting the docs time, better safe than sorry. Things can change hour to hour, even in 10 minutes..for the better or worse.
I really hope this helps ease your mind. I had a 'mild' case as well, but that does not necessarily mean we got off easy. A severe case may recover 'completely' with only very mild issues to even hint that they were ever ill. A mild case may end up on disability. Recovery is very individual. Never feel embarrassed about any questions you have, any fears or concerns, etc. *hug*
This is my first post in the Guillain-barr syndrome Support Group. However, as someone who is living with the consequences of guillain-barr syndrome on a daily basis I wanted to chime in and let you know that you will be okay! I know that those words seem odd to say to someone who is currently suffering, however trust when I say you will be okay no matter what comes your way with this little known disease., I do question the use of Topamax as a form of treatment as it is a drug that is intended for people who have Seizures or Epilepsy. There is no indication in it's PDR write up for use with GuillainBarr. Because of that I would recommend a second opinion. I worked as a Physician Assistant-C in 3 States until I became disabled, so my comment is based on my education and 20+ years as a PA-C.
I was hit hard when I got guillain-barr syndrome, I lost the use of my arms and legs one day and just landed on the floor and in ICU for almost a month, until they were certain it was not going to hit my respiratory system. I am one of the rare cases where GuillainBarr syndrome has effected the rest of my life.
Everyone is different ~ From The Mayo Clinic " The emotional impact of Guillain-Barre syndrome can be devastating. In severe cases, Guillain-Barre syndrome can transform you from healthy and independent to critically ill and physically helpless suddenly, and without warning.
Although most people eventually recover fully, a diagnosis of Guillain-Barre syndrome means confronting the possibility of long-term disability or paralysis. And those who do develop these complications must adjust to lasting, limited mobility and dependence on others to help manage daily activities."
I, unfortunately fall into the category of one who the complications and rely on a wheelchair and a caregiver to help with all of my daily activities. I will pray that, that is not the case for you. It is not uncommon/not completely anyway, for someone who has had an attack by GuillainBarr to have minimal symptoms years after their major attack. Keep in mind that what may seem minimal to one person may seem major to another it is all relative. It can be something that is an inconvenience like loss of superficial sensation in the hands/full arms and hands or feet/full legs and feet to complete inability to use limbs.
I am curious did they do a spinal tap to check and be certain that what you had was in fact GuillainBarr syndrome? I ask this as there are a lot of doctors who jump to GuillainBarr when they cannot explain your symptoms any other way. There are two viruses that are usually found as culprits when it comes to GuillainBarr syndrome, they are not always the cause however, they are usually present. They are the Cytomegalovirus and the Epstein Barre virus, both of these viruses are present in 50% of Adults by the age of 40. Not all people with these Viruses will get GuillainBarr syndrome.
Worry won't help you hon ... stress can allow the viruses come back and wreak havoc. Try to stay calm and then do whatever you need to do if you do get a recurrence. If the recurrence is severe and effects loss of arms/legs or respiratory problems it is time to call 911 (you can just hold down the 9 and it will dial 911 in most States) and get to a hospital ASAP.
I do hope that I have helped you in some small way. I will keep you in my prayers & please know that I will be praying Angels around you to help you heal.
....*" ..)) -::-
.()/ ..))
.((. ..-::-
.. ... - With love in Christ, Jade
I also fear recurrence. I was hit with GBS in July 2013, right after returning from a trip to Europe (I tested positive for Campylobacter, perhaps picked up in some unpasteurized cheese?). I went from normal to a wheel chair in 48 hours. Fortunately, I was diagnosed before it got to my lungs, and I was never on a respirator. I spent one week on IVIG, and 2 weeks in inpatient PT. Then home. I could barely walk with a walker, and could lift 1 or 2 lb weights at most. It was months before I could get out of my favorite chair without help or open the refrigerator. One gets a real appreciation for the ADA legislation with this condition.
Two years later I am almost completely recovered. I have some deficits in running and my hand grip is not as strong as before, but I am now doing tennis drills again. Tingling in my feet is a constant. But I am grateful for everything.
I have three pieces of advice for everyone with GBS or anything related to it:
1. Take vitamin D, 2000-3000 units each day. Vitamin D plays an important role in immune system function. Almost everyone who acquires an autoimmune disease like GBS is vitamin D deficient. I was, and I am willing to wager a fair amount that most if not all GBS patients are vitamin D deficient as well. There is no downside to doses of vitamin D at this level.
2. Take the PT seriously, and keep at it. Starting with those 1 and 2 lb weights, I am now working with 25 pounders. Combined with aerobic exercise of some kind, this is the path to real sustained recovery. Just keep at it. Devote about 90 min to this every day. The progress is excruciatingly slow at times, but progress occurs nonetheless.
3. Gabapentin is important for the nerve pain that inevitably accompanies this condition. However, get off of it as soon as you can. Getting off of it means slow tapering. Cold turkey is not a good idea. I have a minor hand tremor that I am convinced is a leftover from the gabapentin.
My heartfelt best wishes to you all.
Mike
3.
I had GBS in April 2012 I had food poisoning in Paris that develop on a train trip to Sicily. My nerve conduction test are perfectly normal now , yet I still have many residual symptoms, tingling and pain in my hands and feet as well as occasional pain in my back. My breathing is still not as good as it was before. I never fully regained my sense of taste. My abdomen is still numb and my energy and stamina have never returned to normal.
Recently I saw a physiatrist ( a MD who specializes in rehab medicine) she noticed I had foot drop in both feet and wants me to get splints fitted. I had no idea that was going on.
There is a misconception that most people recover 100%I haven't yet met anyone who is 100% better. I am about to start collecting data for an article i want to write about GBS residual symptoms.
It is not in you head, go see a physiatrist and another neurologist and get it checked out. Take care of yourself and thanks for your post.
CB
I had been doing well with my recovery-working and even running 3 miles again several days a week so this seems so discouraging to me. I just wondered if I was having a flare up or a relapse. I don't want to ever go through what I did in June or worse. I was never paralyzed but I could barely walk for months.
I plan to see my doctor for this today but wondered what others had experienced in recovery especially following an illness.
Thanks!!