27 yrs ago I had GBS
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January 8, 2007 at 4:04 pm
I was only 11 yrs old but remember it like it was yesterday. I have alot of pain and still am having pain, but it comes like waves. Every few months I hurt so bad cant hardly stand it, then it eases some. I have been(yrs ago) to neuro’s and have been to several different drs. I have a new dr now and he has done mri’s on both knees and took blood tests. He says everything is normal. How can that be???? I still hurt, hard to explain the pain. Almost like what some call charley horses in muscles of legs and arms. He has made me an appt. with a rheumatology dr. I have been to one already a few years back, he said nothing but did xrays and gave me braces with stays in them to go around knees and inflammation pills….which dont work..new dr has gave me muscle relaxers and something for sleep..which dont work..What am I to do now???? Have a great husband(been married a year now) and with marrying him I have 6 boys and 5 grandkids, which 2 boys are already out of the house. But I have the house and a job that I feel I have to be able to perform everyday living…Just getting really hard. Wonder if new dr even knows what hes doing!! Any ideas would be great.. Thanks
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January 8, 2007 at 8:31 pm
hi & welcome,
in case your pain is neurological have you tried neurontin during these pain spells? take 3 to 4 hours for a pill to kick in. take care. be well.
gene gbs 8-99
in numbers there is strength -
January 8, 2007 at 9:43 pm
I agree with everyone and I would keep intouch with your Neuro they are current in new medications and have more patience to play with doses. You did not mention if you are doing any stretches and have a daily exercise program. Taking time for you to just breath and have ME time would be beneficial too! Yoga or meditation is good for range of motion and helps us focus on us! Does not have to take much time but might help with the cramping if it is muscular. Also there are some good foods that help with cramping and I have also read that some drink quine water or take quine pills and your Neuro can help you with that amount too but that does have side effects. Asparagrass is what I was told to eat. Can you tell I eat it all the time? 😀
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January 9, 2007 at 11:30 am
My thoughts are that you are overdoing yourself – especially with new marriage and family. What you are feeling is normal for most of us when we do too much without resting enough. All kinds of pains and cramps start on me (like today) and that tells me I need a few days of extra rest. I do take meds for sleep and they only work part of the time – I know what you mean. Do whatever you can to get more rest and after a few days hopefully you will feel a little better. Some doctors that specialize in this field are just now recognizing the residuals we all deal with. It is not in your head.
Hang in there!
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January 10, 2007 at 1:37 pm
Thank you all for your comments. I really appreciate them. I have been living with this and drs saying that I am just gonna have to deal with it or say its in my head, one even said I have fibremiaglia(spelled wrong). lol but I know in my heart this is from GBS!! Thank you for having sites like these that we can come and learn more about GBS. Not sure that my new dr knows alot about GBS but I go again friday and I am sure gonna ask him and if not maybe he will refer me to someone else or study up on it. I have a couple of areas that have came up on each calf of legs that he is gonna remove friday. Wish me luck and Thank you all again.:p
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January 11, 2007 at 11:39 am
got luck with your new DR. know what you are feeling pretty bad when you DR. tell you (me) HE knows nothing about GBS he only had about a half og a page in med school. HEREs hoping you get a smarter DR.
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January 16, 2007 at 9:48 am
I had Gbs 26 years ago. I was 7years old. I have muscle cramps sometimes too usually it is when I over exert myself. And the only thing that helps is rest. Just take it easy when these come on and it will pass. sometimes the residules we just have to cope with them til they find a way to help us.
have a great day,
Michelle -
January 17, 2007 at 9:37 am
Faycstars,
I also had GBS 27 years ago. Up till 2 years ago, I knew that the aches, zings and such were part of GBS residuals, but never did anything about it. In Fall of 2005, I went down hard with pain in hands and arms and loss of feeling in hands that went then to feet and legs. First Doc diagnosed Carpal Tunnel, but I knew it was something to do with GBS. I did my research here on the forums and found info that discussed Post GBS syndrome, somewhat like Post Polio, and how after many years of overuse the nerves begin to again deteriorate. I took that to another neuro, still Carpal Tunnel as DX, went back to my PCP, she concurred that yes it is Post GBS and that I probably exacerbated it to the point that Carpal Tunnel ( not truly tunneling with us, more like clustering as that is how the nerves heal, in clusters) and that workouts I had been doing are what eventually knocked me down. I refused the painkillers and muscle relaxers, for me they do more harm than good, but finally ( yes Gene, I have finally succumbed) last month, I started on a low dosage of Neurontin ( generic-Gabapentin). Gene has been suggesting this for a year. The results have been nothing short of miraculous. I no longer have pain in my hands or feet, I have been able to improve my balance through PT and my husband sees the improvements also.
My suggestion is rest as we have all seen will help, with some range of motion and get on Neurontin( See gene’s suggestions on dosage). If it works for you as it has for me, it is a blessing. Hope this helps!
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