Im new here
February 16, 2007 at 1:08 pm
I got GBS in milder of nov. got IVIG soon after the spinal test came +.
if itn was not for this board I would be much worse my hubby Nenni, got iformation from you guys, so thank you for everthing
Helga from Iceland
AnonymousFebruary 16, 2007 at 6:42 pm
I am new to the forum as well, diagnosed with GBS 5 days ago, still in hosptial, can’t walk, and lots of numbness, tingling and pain in my lets. There are a few things about my GBS that have become “perplexing” to my docs. I haven’t lost my patellar tendon reflex action, and they have found 3 white spots on my brain that don’t make sense. I’ve had 3 IVIG’s tmts., but docs stopped it yesterday because of the spots on the brain. Anyone have any similar experiences? Any help, thoughts, direction would be great. 🙂
AnonymousFebruary 16, 2007 at 8:40 pm
I am so glad you are well enough to join us on the forum! We are so happy your husband found us and told us about your situation. It is so wonderful to share our stories and learn from others through this site. Please let us know how you are doing!!
February 17, 2007 at 9:22 pm
[QUOTE=pdara]I am new to the forum as well, diagnosed with GBS 5 days ago, still in hosptial, can’t walk, and lots of numbness, tingling and pain in my lets. There are a few things about my GBS that have become “perplexing” to my docs. I haven’t lost my patellar tendon reflex action, and they have found 3 white spots on my brain that don’t make sense. I’ve had 3 IVIG’s tmts., but docs stopped it yesterday because of the spots on the brain. Anyone have any similar experiences? Any help, thoughts, direction would be great. :)[/QUOTE]
I never totally lost my patellar reflex either. It isnt uncommon in GBS patients from what I have read. Also, the white spots could be (emphasis on COULD) MS, or it could be age related, or a number of other things or nothing serious at all. Do a google for white spots on the brain and there is a lot of info ranging from mini strokes to migraines to MS and lupus. Remember, Docs dont know everything about GBS (even the neurologists) and if it doesnt present itself like their books say it should, they feel they should choose something else. Did you have a spinal tap? How long were your symptoms going on before you went to the hospital? Read thru all of the posts here, you will learn a TON! Keep us informed and let us know how you are doing okay?
AnonymousFebruary 17, 2007 at 9:48 pm
Hello Helga and Nenni,
How are doing now, Helga?
Pdara, welcome also.
Why did your doctors stop the IVIG because of the white spots on your brain? What is their reasoning for stopping it? Are they suggesting that the IVIG could be detrimental, and if so, how?
I know absolutely nothing about spots on the brain other than what I have read here. There have been those who, following GBS, have been told that they have spots on the brain and might have MS but were then told they did not have MS.
I’ve often wondered if it is something to do with the GBS, but do not know.
You are just 5 days into this. GBS can hit its peak in 3 to 4 weeks.
Personally, I would want answers from your doctors. In fairness, they may not be able to give definitive answers but I would ask them to share their thoughts with you so that you work together.
AnonymousFebruary 17, 2007 at 10:19 pm
Pdara, Im also new Dx 1/8/07 38 y/o Family Doctor mother of 2. If you were responding to the ivig you need to con’t at least 7 TX. The lesions may be MS or nothing(these can be seen with many other conditions ie migranes). There is only miminal risk with the ivig and everything to gain if you might have GBS. Was your symptom onset fast (GBS) or slow (MS)? You really need a DX. Push the doctors for this. I hope you have had Lumbar puncture, infectious disease w/u, Nerve conduction tests. Please update us on how you are doing. Dr Shawn
AnonymousFebruary 17, 2007 at 11:42 pm
Hi Dr Shawn
Firstly, welcome to the Board!
You mentioned that lesions (white spots) on the brain can be found with migraines. I am intrigued because I was very recently told that I had a migraine headache – and I don’t particularly want another one!.
As you mentoned the IVIG, I hope that Pdara does ask questions about the IVIG and gets the full course if it has already helped.
I see that you were only diagnosed with GBS in January – how are you coping so far?
I am intrigued – the spelling of your name is unusual, well, it is here in Ireland, where it would be more usually Sean or Shaun. Is your spelling an American version?
You know what? I think I’ll start a migraine thread – well, it keeps me out of mischief!
AnonymousFebruary 18, 2007 at 3:07 pm
I guess “Shawn” is American version. They usually spell the boys “Sean” but I know one guy spells it Shawn. My mom said I was going to be Shawn (girl or boy).I would love to visit Ireland. My sister live in England and I have been to Scotland(Edinburg). That’s as close as I got. I too have Migraines. Mine always respond to the tryptan meds(ie Zomig, Imitrex, Maxalt). With severe ischemic Migraines it has been known to cause small ischemic lesions on the brain. I was just useing that as an example of other causes of MRI lesions. I’m coping but very frustrated with the fatigue/weakness. Trying to be patient. Getting better everyday but so far away from normal. Thanks for asking. Dr. Shawn
February 22, 2007 at 3:32 pm
hi Ali, I stood in my feet for the first time since I got sick, It was just wonderful, I could lift m y feet
It was just a miricle, live is so wonderful now 🙂
AnonymousFebruary 23, 2007 at 3:48 pm
PDARA here, to all of you THANKS! Can’t tell you how helpful your posts have been. I’ve just been released from the hospital, still numbness, tingling in my feet, lower legs just below my knees, and of course can’t walk by myself (although this has been minimized due to my age (35) and ability to “bounce back quickly”) Docs have spent the last 5 days “ruling things out”, and they are now saying I don’t have GBS, and have discontinued the IVIG. I’m not worse, but I am not better. Spinal tap was done 5 days into this, and came back normal. First neuromuscular was abnormal, but now are normal. White spots, possibly migraine or could be CNS inflammation, but not MS or Lupus. They just aren’t “sure” what it is or was. A repeat tap wasn’t done, b/c neuro. was normal (although there was some F Wave that wasn’t normal, but neuro said “not a big deal”). Been very fatigued, and in rehab, but get exhaused very quickly. Any thoughts of others who have a similar story? :confused: Thanks again, this forum has been a breath of fresh air in a sea of confusion, blood draws, pin pricks etc….
AnonymousFebruary 23, 2007 at 7:06 pm
Yes, life is wonderful, and I think some of us, …. and that means me, tends to forget that sometimes:o . I am so glad that you are on your road to recovery, and I wish you all the best, with a speedy and happy recovery. Just remember, dont overdo things, recovery takes long and to push yourself beyond your limit with do more harm than good. Please keep us updated on your progress, and once again, send our best to your hubby.
February 26, 2007 at 4:26 pm
I stood in my feet for firthst time since I got GBS, it was only for 1 min but what great feelings it was:D it was difficult for I have still no nerve conecting my toes or feet, 😀 I have to think about standing, and I feel like caveman can only think about one thing at the time:D
Ali my hubby send you hugs and thank you for your support
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