AnonymousOctober 18, 2010 at 10:34 am
In May of this year I had a mild case of GBS. I was partially paralyzed but got the IVIG started early and the sypmtoms didn’t advance any further. I was in the hospital for a week and the physical rehab for a week. I’ve been back to life as usual for several months now. At the onset of my symptoms I had severe low back/sacral pain and then the numbness and tingling in the legs and feet started. I also had tingling on the tounge and then the symptoms progressed rapidly.
Yesterday I started to have low back pain again. It is the exact same type of pain I had before only not as far down in the sacrum. It is defiantely not muscle pain. I don’t have any other sypmptoms but I am very concerned that they will appear and I will end up back in the hospital.
From everything everyone tells me and everything I’ve read I know it is not probable that GBS can come back like this but you can understand my fear right?
October 18, 2010 at 11:43 am
Have you by any chance been ill recently? under more stress than usual? Work out and push yourself? It could be residuals and nothing to worry about, just annoying and uncomfortable (those heat patches work fairly well. I used them when I first got sick and my back hurt). BUT if you are at all concerned, do not hesitate to be seen. You are only 5 months past onset so it is very early in your progress. Anything is possible. I have been in your spot, heck even after 4 years I still get those fearful twinges when something pops up that is all too familiar from the beginning. Remember, a reoccurrance can move quickly so if anything else comes up get in fast! If you can, take some time to just rest rest rest and see if that helps, if not I would make an appointment just to ease my mind.
AnonymousOctober 18, 2010 at 12:30 pm
I have been under a lot of stress and pushing myself…I have been in a really tough situation lately but have recently started to do more to take care of myself and started to see a therapist to help deal with problems. So it kind of seems like the stress is getting better, but maybe too little too late in reguards to my health?
I have a call in to my doctor.
So, is a reoccurance even possible?
AnonymousOctober 18, 2010 at 2:18 pm
It sounds like you are having a rough time and I can tell you that everything affects you. Too much stress – too much activity, they all can cause pain. Learning to pace yourself is the most helpful advice I have to offer. Listen to your body and when it says “slow down and rest” then do that.
I have had GBS 2 times and a few others here have also. It is very very rare, BUT it can occur.
Remember – rest when you need it.
AnonymousOctober 18, 2010 at 4:39 pm
I had a return of symptoms about a month ago that lasted about a week. It was at first treated as a cardiac event by my doctor but later determined that I had a viral infection. This was an extremely scary situation which added stress to the equaition. But, after about a week all symptoms returned to previous conditions. Hopefully for you your return will be short lived
October 18, 2010 at 11:20 pm
Did they change any of your medications, assuming that you are on medications? My doctor put me on a generic statin drug for sugar, and after about a month, I had this pain in my lower side when sleeping, so after I stopped taking the drug, the pain went away.
AnonymousOctober 19, 2010 at 11:15 am
[SIZE=”2″][COLOR=”SeaGreen”][/COLOR]Good morning. I also have back trouble with GBS Have you seen a Neurologist and had a back X-RAY. You just may have a herniated disc?????? Mine was and over the years it came and went. If it is in your lower back it could be putting pressure on your cyatic nerve which will affect your feet and all so in some people the legs. I am suprised one of your doctors had not had a back X-RAY done.
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AnonymousAugust 19, 2008 at 8:45 pm
Wow! jojo, you must of had it bad. Were you completely paralyzed at orig. diag.? I still walk with a rollator. So I have a long way to go. But 6mo. after my orig. diag. I had a relapse. I was walking with just a cane at that time & my legs got really weak & that is when I was diag. with acute sensory neuronopathy, which they say is a more mrare form of GBS confirmed by as EMG. Only motor nerves firing no sensory nerves firing. So you may need a repeat EMG. Good luck & take care. Keep me informed.
AnonymousAugust 19, 2008 at 9:04 pm
Amy, was rereading some of your other posts and you had mentioned originally you were paralyzed to your forehead, A couple weeks abt. ago you mentioned the numbness too; is it getting worse? I would give your neuro the call-wonder if it is more a residual? I won’t say more, because I have cidp and hope others answer you that know way more about gbs than me. The foot surgery in the beginning sounded a bit hasty, but like I said others can offer you lots better advice than me.
Take care, Amy. All the best to you.
AnonymousAugust 19, 2008 at 9:35 pm
Hi, Amy, I am sorry that your hands and feet are more numb and know that this is scarey. I have a couple of questions–how fast has the numbness come on and did it start in the feet and then the hands or both? Has anything else changed?
the reasons I ask are several. If something is changing fast, you have to be really careful as you might get numb and weak rapidly up to the breathing muscles. This is more characteristic of GBS or relapsed GBS and not of CODP, but any rapid change should be reported to your neurologist and if it keeps rising up your body, you need to be seen at the neurologists or an ER.
If a person is really worried or anxious, as lots of this stuff will make you, you can get more tingling and numbness in the hands and feet associated with that. This is still really scarey, but is different that numbness and tingling from ongoing nerve damage and needs to be addressed and treated differently. I do not know if this is any part of it, but thought it was worth a mention.
I also read back through some of your previous posts and wanted to comment on walking without AFOs. My PT and rehab doctor said that it was really important to keep moving and stretching the ankles to keep them as strong as possible despite the foot drop. For me, it worked to walk at work with AFOS and at home without them especially on the stairs (as it is hard to walk on stairs period, but especially with AFOs). If you are unstable, there are exercises to gently stretch the Achilles tendon (I would also stand by the kitchen counter holding on for support and then rising up on my toes and also trying to raise my toes up (trying being the major word there). You said in one post that you were going to get hinged AFOs. You need a little flexibility in the Achilles to be able to use these. Even drawing circles with your feet in the air or other ways to stretch and use the foot muscles will help strength, movement, and balance.
WithHope for a cure of these diseases
AnonymousAugust 19, 2008 at 11:38 pm
I had GBS in 1988. It mostly affected my legs and arms. Never hospitalized.
Always had minor issues like loss of sensation, numbness, and minor weakness. Nothing major. More of a nuisance.
Started to have more issues in 2007. Went through a mid-life crisis and divorce. A lot of stressed. Had increased issues with arms and hand. In 2008 I started to have a foot drop on the right side.
Still trying to figure out if this is Post GBS issues that are coming to light now or something else.
The long-term affects and damage from GBS is not well understood. There are many of us on the Forum that seem to be hitting the wall with residuals between 15-25 years out.
Have you been doing a lot of things?
Under a lot of stress?
Not getting enough sleep?
All these things will cause and increase in residuals.
I hope this helps and feel free to contact me with any questions you may have.
Learning to live Post GBS or something else.
AnonymousAugust 20, 2008 at 3:05 am
What a life we have to live! Sounds like you need to see the doctor again and get checked out. I have CIDP and not GBS and stay numb all the time. I hate the pain that goes with this stuff. I wish you my best and hope that doctor starts checking things out so you can recover! A big cyber hug here for you!
AnonymousAugust 20, 2008 at 10:08 am
Hi Amy, I am like Chris…25 years out and still getting residuals. They have gotten worse in the last few years. I do know they are exacerbated by stress, overdoing it, being tired and/or fatigued. Mine symptoms do come and go. But I also want to suggest you consider WithHope’s comments. She is in the medical profession and has lots of good info and education for all of us. Each of us is unique in our residuals so you need to check out what is going on for you.
Wishing you well and hope you can get some answers.
AnonymousAugust 22, 2008 at 7:07 pm
just got released from the hospital. had lumbar puncture – negative for the virus had other tests fone as well. seems that it was a flair up hands still numb (from the chin down to my feet actually) follow up appts in the next severl days. seems the stomach virus i had last week may have brght the symptoms back. getting frustrated finally making progress and now they say damage may be permanent. mentally more of a toll then physically. dont know what to do. this is getting harder instead of easier.
AnonymousAugust 22, 2008 at 7:51 pm
Hi JoJo! I know what you are feeling! In 1987, I was placed in the hospital for stroke like symptoms. Then they said it was not a stroke. Thought possible MS an because of a blood transfusion they tested me several times for AID but that was negative. Before that stroke incident, I started getting numbness in my legs. I later got diagnosed with lupus. 5 years later. But had neuropathy. That neuropathy after having surgery did some damage. Ever since May 14th, 2008. I have been sick with something that has been attacking my nervous system. Right now I am considered CIDP of unknown etology. Waiting list for Duke. And I see me getting worse everyday! No treatment as of yet except for a few meds to help ease the pain and not sleeping. The doses have been to low and after seeing my doctor he decided to increase a few things.
I feel your frustration. Really do! Maybe the neurologist will be able to get you back on your feet. My biggest fear right now is them saying there is nothing they can do for me! It’s not easy dealing with this nerve damage mess. I hate it! I really hate it! And it’s hard trying to tell your doctor what is going on! I think we all have our downs on these diseases. We want to have hope and then get let down makes us depressed.
You know! No matter how bad we feel our life goes on around us. It’s not easy either. The only thing we can do is keep our hope and never let it go and try our best not to give up. That’s not easy doing either! But we have to be fighters here and we have to keep going and try our best to have whatever life brings us. Take one day at a time. Do what you can and what you can’t do, there is always tomorrow. And if tomorrow brings you a bad day there is always the next day!
Sending you a big Cyber Hugs
AnonymousAugust 24, 2008 at 4:02 pm
life back to normal routine now. still so very tired. numbness is very bothersome. having to adjust. i hate going backward instead of forward. am going bsck to work tomorrow well see how much i can do. i have therapy this week(physical). i guess well see how much i can do thanks for all the words of wisdom.
AnonymousAugust 24, 2008 at 9:07 pm
I was diag. April 2007, so it’s been 16mo. Seven mo. after orig. diag. I had what Dr’s called a relapse!:confused:
Even though I always have had the numbness & tingling in hands & feet & NO reflexes I was walking alone without assistive devices. I have not driven since diag. or returned to work. I am now on SSD.
They con’t to tell me it can take up to 2 or 3 yrs. for a full recovery. The more I read on this forum I’m no sure there is such a thing as a full recovery!:confused:
I realize after my relapse I was diag. with acute sensory neuronopathy (more rare form of GBS) which really makes me wonder about full recovery.
It is difficult to learn to live with this numbness & tingling 24/7. But I guess it could be worse.
Hang in there jojo I’m praying for ya!:)
AnonymousAugust 25, 2008 at 12:45 am
I am almost 5 years post GBS and I still continue to improve. Yes they do give a time frame of 2 years but no one knows for sure. Just remember the little teeny tiny things are also improvement. There will probably always be set backs or residuals or whatever you want to call them but some day you will be amazed that they are less and less. Of course we may never be back to our old selves but maybe we can look at this as an adventure..Enjoy life and celebrate the little things.
AnonymousAugust 25, 2008 at 11:15 am
I read your post and sounds familiar. I had gbs two years ago and had one episode where my leg “gave out”. I have had stomach issues for the past few days and have felt weak in my legs and arms with increased burning in my feet. It was all I could do to just mow the lawn. I ate an undercooked brat recently and don’t know if that is the culprit or a virus. Anyway I was curious if anyone else felt the increased symptoms of weakness, and fatigue when ill? Please let me know and thanks.
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