New to the forum and GBS
AnonymousDecember 29, 2006 at 1:20 pm
Hello, my name is Jorge Martinez and I’m 21 years young.On Dec. 4th, 06 I was diagnosed with GBS. It all started on the 3rd. I felt my toes get tingly as if they had fallen asleep. I went about my business that day, but I was frustrated because I could not wiggle my toes. I tried to shrug it off and went to sleep around 11pm. By 2am I could not sleep and knew something was not right. Too scared to drive myself to the ER, I immediatly called my mom to rush me in, and I was seen fairly quick. After blood work all came back negative + what I kept describing I was feeling, I was diagnosed with GBS and sent to ICU. By the time the Neurologist saw me around 11am or so, both my feet were completly paralyzed and I could feel myself getting much weaker. My blood pressure was getting high as well as my heart rate (140’s)
The plan for me was to receive 5 PP treatments begining the very next morning. To make a long story short, the GBS paralyzed everything face included except for my chest/lungs, which was described as a miracle by the doctors. I was in the hospital for a total of 10 days, and was scheduled to receive home health care. Been home for 2 weeks now, but I still cannot stand or walk on my own. My body feels fine now except for my hands which feel like electricity/buzzing everyday 24/7, and my feet which still feel tight.
Is this normal considering it’s only my hands/feet? I can slightly wiggle my toes now but not enough to make me feel any better about my recovery. I’m slowly getting better at using utensils also.
I try to rest as much as I can but this feeling in my hands and feet is very frustrating. I am currently taking Neurontin (300MG) X3 times a day for my nerves and Cyclobenzaprin (10MG) X3 times a day for muscle relaxation.
I am getting home therapy 3 times a week (M,W,F). I really don’t feel much acceleration in my recovery, just more pain with not allot of gain. Currently trying to get my Neurologist to approve OP therapy. Some days I just break down and cry because I’m ready to get back to my life. I pray to god everyday for a speedy recovery and to bless the family who has supported me so heavily. Never thought I would get struck with an illness which strikes 1 to 2 people in every 100,000. Please tell me what I should be feeling as I get better. I appreciate everybody’s help here. Thank You God Bless.
AnonymousDecember 29, 2006 at 1:29 pm
Hello Jorge and welcome to our family. It sounds like you are doing quite well considering. As you will see as you read the forums most people have very unique stories and yet we are all similar. Good luck in your progress and stay around and visit awhile. Someone is always here for you.
AnonymousDecember 29, 2006 at 1:40 pm
Thank You Sherry. I will stick around everyday until I get better and beyond. What do you see for my future recovery wise? I still cannot accept that I won’t walk for another month or 2+. Should I try to eat or avoid certain foods? What about vitamins and/or supplements? Every little bit of info makes me feel better about my recovery and understanding GBS. Thanks once again, and God Bless.
AnonymousDecember 29, 2006 at 2:10 pm
We all know how absolutely frustrated you feel, but remember that recovery does take a long while and you have to be prepared for that … unfortunately 🙁 . No one can say how long each individual takes to ‘get better’, or walk etc. I was 19 when I came down with GBS. Everything paralyzed and was on a respirator and had a trach for 6 weeks. The good thing for you is how quickly they did the plasmapharesis, not everyone gets a doctor who will do it.
My PT was quite intense the few weeks after intensive care. When I got out of hospital my mother took me about 3 times a week for many months as well. One thing the private PT told me was that even though I was taught to stand, roll over etc in hospital, i needed to learn to crawl, which she proceeded to teach me. I have since spoken to someone else with GBS recently, and they told me that their PT told them the same thing. Often it is so difficult to see the little improvements that happen every few days, and to get despondent because of it. However, if you look back over a week or two, you may realize, for instance, that you werent able to stand for more than a couple of seconds by yourself, and a number of days later, you may be able to stand for 4 or 5 seconds. Silly little things like that all show you are improving, even though it may be hard to see, and you want to get on with ‘normal’ living.
Wishing you all the best! Keep asking questions.
AnonymousDecember 29, 2006 at 7:48 pm
Wow you shouldnt get discouraged because considering you sound like my case you have made great progess so far. I was 46 two years ago when I had GBS and spent over 3 months in the hospital and another 3 more months in OP therapy. You have age on your side and considering that the PP worked fast that is great. I know you are young and it is hard for any age but know we are here to support you. Everyone is different. I’m still searching for answers like my feet constantly tingling for almost two years, fatigue daily and no ankle relexes so I can’t jum or run. Just have patience because GBS means getting better slowly.
AnonymousDecember 31, 2006 at 1:48 am
Hello Jorge, Your case sounds almost identical to mine-timeframe wise I was in Hospital and in-patient PT for 7 weeks, barely walking when I came home. 2 months since-and I’m walking well unassisted, Standing-(like shopping) really wears me out. I stretch every morning and exercise my feet (still 50% numb).
I just started back to a gym to work out and are my legs ever weak!!
As far as what you should feel and how well and quickly you’ll recover everyone is different. The main thing is to stay positive and don’t take “no, I can’t do it” for an answer. You’ve already got the power on your side. My faith in GOD and the support of true friends and family is what has gotten me through so far. Remember: “Let us run with patience the race that is set before us” (Hebrews 12:1)
GOD bless, Andy
AnonymousDecember 31, 2006 at 8:30 am
You are extremely lucky that you were diagnosed so quickly. I started getting the tingling in my hands and feet at the beginning of April of this year, and didn’t get plasmapheresis treatments until the end of April. By that time, the disease had progressed to the point where my nerves were severely damaged. Thank God you never had to experience the ventilator or tracheostomy like many of us. Sounds like you have made great progress in a short time. I hope you’ll recover quickly like a lot of patients with similar circumstances. Best of luck to you.
AnonymousDecember 31, 2006 at 10:54 am
Thank You everyone for your kind support and advice. The past 2 days I have not been feeling well at all, lots of pain and muscle soreness. Seems like some days I can move better than others so I never know if I’m going forward or backwards. Reading all the support puts me a little more at ease.
AnonymousDecember 31, 2006 at 11:00 am
hi jorge & welcome,
prolly you are not taking enough neurontin. 900 mg/day is not much for gbsers. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 1, 2007 at 12:46 am
I have studied wholistic health for 30 years. I seem to have avoided the bad pain and did not need neurontin. I think this might be from my supplements. I take a 100 mg B-complex capsule 4 times a day. I take 2 grams of vitamin C in capsule form five or six times a day. I am absorbing all of it or else you get bowel intolerance. I am sure there are those that would say this is too much, but even Linus Pauling suggested 10 grams when you are healthy and more if you are fighting off a cold. WHen I tried going off of it for a 24 hour urine test, I felt like I was run over by a truck. It’s just a suggestion. I am not a doctor.
You are so lucky you have a mom to help you. My mom got arthritis in her hands from watching me get sick when I got this 20 years ago. It left her hands when I got better. Now that I have gotten GBS again 4 months ago, it is a lot harder. I am older, my mom has died, and my friends either won’t help or help minimally. Although I am getting stronger, I still cannot walk. I find that after 3 months of waiting for the body to repair itself and living alone, it is so frustrating. And those that say hang in there…..that’s easy for them to say. You are young, Jorge, so that will help….and you have a support group.
AnonymousJanuary 2, 2007 at 7:36 pm
Jorge, hang in there…
I am 2 years post GBS diagnosis.
As mentioned earlier, we all have a wide range of stories, but we are all connected. I was doing quite well, even teaching Physical Education until I had some minor surgery which really set me back.
So I am back to therapy as I did when it all started. A friend in the medical field suggested I keep a journal each day after therapy and keep it up once I was doing exercises on my own. Although the progress seemed unbelievably slow…as I looked back in my journal I realized it was “progress”. There may be days you feel like you are taking one step forward and two steps back, but when you look at the whole picture, you are able to see you’ve come along way. I realized it when I started keeping my progress on a treadmill. Before GBS I was walk/running 2 miles , 5 times a week. My first experience on the treadmill during therapy was 5 minutes and I was holding on tight. I eventually built up to 30 minutes at a pretty good pace while holding 2 pound weights in my hand. SO it will come…you will learn the virtue of patience along the way and it’s okay to get discouraged. There is always another day. And always plenty of support here.
Hang in there, let the therapists set your pace.
AnonymousJanuary 3, 2007 at 1:07 am
No need to worry. i had GBS by 18/10/2006. Same problem like u. i joined my work by 18/12/2006. even i am riding motore bike now.
Be cool & do Physiotherapy. Ask your physio to do electric stimulation. I have recoverd due o electri stimulation on leg,Back & had. take rest two hrs. & do exersise with help of family member at home entrire day. Keep try. God will definitely help u. In m case recovery come faster after one month of physiotherapy. if you are getting paining /Swelling/heavyness in leg/hand/back do hot water theraphy instead of taking painkiller.
Wish u all the best & happy new year-2007
AnonymousJanuary 3, 2007 at 1:49 am
I know this must be scary to you. I don’t have GB, but my husband does and I know how frustrating it is for him. It’s especially frustrating because he often gets accused of faking it. I hope that hasn’t happened to you. Like others on the forum have mentioned I think from knowing what my husband has gone through it’s important to stay active, yet not over do it. It’s easy to over do it if you can’t feel your digits. My guess is a good rule of thumb (no pun intended) is to make sure you exercise everyday. If you can’t move your finger or toes by themselves, then push them against something (like the couch or rug to flex them, or have a friend or family member massage them. but I repeat don’t push them too far, because the fact that your feeling is dulled makes it easy to cause injury without realizing it. Please keep us informed about your progress.
AnonymousJanuary 7, 2007 at 2:23 pm
I was diagnosed after four days of goin to drs because of the severe pain in my hands and feet 11/5 /o5. was in hospital an rehab 2 & 1/2 months. my hands and feet still hurt I am currantly taking neurontinm and lyrika. most of the time it is bearable except when I overdo it.
My hands and feet are still numb. gratitude has got me through this whole experience. My 81 year old husband is my caregiver. HE’S GREAT1
AnonymousJanuary 7, 2007 at 4:02 pm
🙂 Hi Jorge,
My birthday will be this Friday, the 12th of January, and I was ten years old when I came down with GBS (yes, I will be 46 years young). I didn’t have many of the improved treatments that are now available to many living with GBS, and I’m not all that sure that I was diagnosed early enough to get the proper intervention/s. The first diagnosis was polio, so go figure. I’m writing a third book to talk about and tell others of my GBS experience and while living in foster care too (that’s right, I was living in foster homes when I got sick). I tell you (and others) this not to say that my experience was worse than yours, just different.
Today, I still have to live with walking around in my AFO’s (a type of plastic brace to assist with heel-to-toe movement because of the absence of muscles in my calves, ankles and toes). When I’m in the braces, I’m “Superman” and very few even know that I have to rely on the braces daily. When I’m not in my braces, I’m simply “Clark Kent.” I go about my life working every day, driving my car, riding bicycles, dancing, laughing and crying (when the need arises) and writing (again, a [I]third[/I] book).
Recovery will vary as others have stated. Work hard but not too hard at PT and OT. Take your meds as prescribed.
Finally. Laugh and cry as the needs arise. Your emotional state is as important as the physical state.
Come here and “talk” it out with others and we will graciously assist you with your recovery.
One day at a time is all that will be asked/demanded of you while on this new journey.
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