GBS May 2010 – new to forum
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July 19, 2010 at 10:50 am
Hi there,
I am new to the forum.
In May of this year I began to have severe low back pain (sacral) and numbness/weakness in the legs and feet and numbness in my tounge and throat. The symptoms spread quickly and in less than 48 hrs I begain to vomit and went to the ER. After blood work, MRI, and CT scan – all clear – they did a spinal tap and I was diagnosed w/ GBS. So within about 12 or 13 hours of being in the ER I was admitted to the ICU and started on IVIG. It never dawned on me that my legs and stomach were becoming paralyzed! I believe the quick action of the ER doctor and neurologist are what saved me from the GBS becoming more advanced that it did. I never became completely paralyzed. My pelvis is the only thing that I lost complete use of. I could always move my arms and legs and I had partial paralysis in my stomach, diaphram and esophogus.
I don’t think I realized the seriousness of what was going on with me even as they were wheeling me into the ICU. It was never fully explained to me. I was in the ICU for 5 days receiving the IVIG and then a regular room for 2 and then transfered to an inpatient rehabilitation hospital for 1 week.
During my time getting the IVIG I had tremendous nerve pain in my spine. A pain unlike any other I have ever experienced and narcotics wouldn’t touch it. It is my opinion that the IVIG treatments were flairing up the pain. As soon as the treatments ended so did the pain.
I am pretty much back to life as usual now with the exception of fatigue. I cant work as much as I used to yet doing massage therapy. It seems I had a honeymoon period of sorts after I got home from the hospital as I felt like I was getting stronger every day but now it seems I am regressing in strength in certain muscles and the fatigue has really set in. My concern is that since I had a mild case, I will have another episode in the future….
I am learning more about GBS from this site/forum than anywhere else. I wish I had found it sooner! What really strikes me is just how different everyone’s story is.
Thanks to everyone for putting their stories out there for others to learn from.
~Christine~ -
July 19, 2010 at 12:22 pm
Hi Christine and welcome!
So good to hear that your symptoms did not progress and your hospital stay was relatively short.
Sorry to hear that you feel you are regressing. Please be patient and know that it is unlikely that it will return.
As for your symptoms returning, all I can say is that I too feel like things are worse at times, especially in the eveninmg when I get tired. I think that it is expected when one is tired so I try to gauge how I am feeling in the mornings or at physio. Allow the positive comments that you and others make about your progress to sink in. If you arelike me that may be difficult at times, but please stay positive.
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July 19, 2010 at 3:05 pm
Christine,
Welcome to the forum.
I’m happy for you that you never lost movement of your arms and legs.
Since your GBS is so recent you will have a lot of fatigue. Get as much rest as possible and don’t overwork your body.
Have read of others (very small percantage) having relasp of GBS.
Possible you may need physical therapy since you only had one week of it.Good luck
Shirley -
July 19, 2010 at 3:34 pm
Thanks for the replys.
I am still doing PT. I did 2x week for 4 weeks and now I am doing 1x week for 4 more weeks. I asked the PT to reassess me and she confirmed that I am weaker in some muscles.
Everyone kept telling me not to [I]get[/I] fatigued so I wasn’t increasing my work load or excersing, etc. I didn’t know that fatigue was such an issue no matter what you do w/ GBS until I got on here and started reading. Everyone keeps saying how strong I am to have recovered so quickly but I truely believe I was just lucky and had good doctors who were on top of things.
I found it easier to stay positive while in the hospital and just focusing on myself…It seems to be a little harder now that I am at home dealing with the daily stresses of being married and having a 3yo and a 17yo.
We will get through it though.
~C~ -
July 19, 2010 at 6:18 pm
Welcome to your GBS/CIDP family. You are not alone. We are all here for you. So sorry you have this. Feel free to share, compare, vent & etc. Be sure to read all you can about it.
Love, smitty
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July 20, 2010 at 10:19 am
Christine,
I have 2 kids (2 and 4) too so I know what you are going through. Life does not stop for us when we have GBS or a serious illness. I had to drag myself out of bed to take care of my kids despite my husband stepping up as much as he could. I did not realize the seriousness of it at the time and was not hospitalized, although I should have been as told by a later doctor. I went to the ER twice and they sent me home, not realizing my issues since I was a “mild” case. I have not been able to rest as much as I probably should, but what I do is rest on the weekend when my kids nap and if I feel like I am overdoing it, take a step back. As for the fatigue, I recently started taking a slew of vitamin supplements, which has been helping, in particular Vitamin B12. Look for the sublingual methylcobalamin (Whole Foods), and take 1000 a day. Hang in there and just focus on one day at a time. If you have dips or relapses, think about how bad things were at the beginning and how far you have come and that will help you to get through it.
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July 20, 2010 at 2:30 pm
May I suggest taking 5000mcgs of vitamin B-12. You can not take too much vitamin B-12.
Lord please have mercy on young mothers with GBS/CIDP. AmenLove, smitty
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July 21, 2010 at 2:58 pm
Christine, just a word of well wishing. I was diagnosed in March and wish I had been able to say the results were as good. Hope all goes well and God Bless.
Pat G -
July 22, 2010 at 12:21 pm
Welcome Christine. Glad you found us. Raising a 17yo is hard enough without these issues. And with a 3yo as well 😮 . So I hope you’ll keep in close touch with folks that know what you’re going through, who’ll listen, encourage, and be a shoulder to cry on.
Gary
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July 22, 2010 at 3:02 pm
Thank you so much for the replys. I am frustrated that my Drs. and PTs can’t answer my questions – So far my chiropractor has been the most helpful! It’s nice to hear from people who have been there.
~CP~ -
July 22, 2010 at 10:48 pm
Christine –
Welcome! This is a wonderful place to come and share, vent, learn – whatever. I have learned so much from so many and have found the love and support you will recieve is amazing. GBS is a lousy, sucky disease – and I don’t care if “they” say it isn’t a disease – it is a syndrom. In my mind it is truely dis ease. I saw my neuro last Friday and her major caution was to not overdo. The 2 naps a day went to one, and now I just sleep through the news while dinner cooks and I’m okay until I turn in about 9. My strength is crawling back, just as my body did all January, February and March. However you look at it, no matter whether the GBS was “mild” or severe – you have it and this is the place to be. Welcome aboard and share, share, share. It helps the healing!
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July 24, 2010 at 1:26 pm
I think we all get frustrated sometimes with our docs & medical staff, can’t help you there. It sounds like they were all right on top of what needed to be done when you were in distress.
Love, smitty
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