First time posting

hi s & welcome,

gbs is rare. when several cases in the same area & time frame are reported it can be a common triggering mechanism [ie. chemical in the air]. not all would respond to the trigger hence not everyone gets gbs. take care. be well.

gene gbs 8-99
in numbers there is strength

Skelly,

[B]What is your area? [/B] Glad you found us. You’ve got lots of reading to do and post anytime with questions.

Take care

Hi, I live in Northern California and my dad was diagnosed with GBS just three weeks ago. We were on vacation when it hit and the small hospital that we took him to insisted that it was a stroke (now, we know otherwise). We are now at week three and he has had one round of IVIG. He’s not getting better at this point and we can now barely understand him when he talks. He was staying at a rehab facility and they just did not understand this syndrome. Since he has been deteriorating, He is now at Stanford and they might do a second round of IVIG. When does it start to get better? Are there rehab facilities that know how to help patients with this?

Tell me that it gets better from this!

Hi, I live in Northern California and my dad was diagnosed with GBS just three weeks ago. We were on vacation when it hit and the small hospital that we took him to insisted that it was a stroke (now, we know otherwise). We are now at week three and he has had one round of IVIG. He’s not getting better at this point and we can now barely understand him when he talks. He was staying at a rehab facility and they just did not understand this syndrome. Since he has been deteriorating, He is now at Stanford and they might do a second round of IVIG. When does it start to get better? Are there rehab facilities that know how to help patients with this?

Tell me that it gets better from this!

hi stellarwnd & welcome,

ivig is working if he stops getting worse. recovery will happen at some time after that. his deteriorating could be 2 possibilities; poor rehab care or another gbs attack. i’ll guess on the former. keep him at stanford as long as possible stating that last time he was moved to rehab way too soon. rehab care is never as good as hosp care. take care. be well.

gene gbs 8-99
in numbers there is strength

Thanks, Gene —

Stanford just completed the LP and confirmed that he has GBS. He has also had an indepth MRI (head and spine). Plus, he will undergo EMG (?) this afternoon. After the EMG results, the doctors will decide if he will have a second round of IVIG or PE treatment.

What’s really strange is that his breathing is not comprimised, but his speaking is virtually gone. Has anybody heard of this?

Dawn

Your dad will get better….the thing is a late diagnosis and treatment will likely mean a longer recovery. My family was told by the nuerologist…the sooner you can stop the advance of nerve damage, the faster will be recovery. I thank GOD for that doctor every day because people call me miracle man …thay expected me to be down for a year. And I was able to get back to work and life in about 2-1/2 months. Get the best knowledgeable nuerologist the hospital has and IVIG treatment to stop the nerve damage so recovery can begin. I’ll be praying for you.
AL

dawn,

‘What’s really strange is that his breathing is not comprimised, but his speaking is virtually gone. Has anybody heard of this?’ symptoms are dependent on what nerves are damaged, so, yes, breathing w/o speech is possible. take care. be well.

gene gbs 8-99
in numbers there is strength

Dawn,

Personally, I also had minimal breathing problems, but one vocal chord was completely paralized.

For 3 months, I could not speak above a whisper -there were those who thought this part was wonderful! 🙂

Now, when I am tired or stressed, my voice has a cracky sound. Otherwise I sound normal.

Best wishes to you and your family.

Hi, we are at the month and a half mark and my dad went through another round of IVIG. His voice started to come back around the 4th day of treatment. Yeah!

However, much to our frustration, my dad has been release from the hospital because he’s not sick enough to be in the hospital and not well enough to be at Stanford’s Rehab. facility (needs to be able to do 3 hours of physical therapy and he cannot). So, we are now back at the original rehab facility.

The doctors at stanford have said that my dad has a very acute case of this and it could be chronic….and might not ever get better beyond what it is now. The next step in treatment is a steroid treatment (prednesone sp?). And, of course, he will have physical therapy everyday.

Now we are at the ‘wait and see’ mode. So, we wait and see.

I wish you all a lovely weekend!

Dawn

dawn,

prednisone is not for gbs, only chronic gbs [cidp]. however regular infusion of ivig should be tried [say every 6 weeks] first instead of prednisone for cidp. prednisone costs pennies. ivig costs $1000s. but prednisone has very bad side effects & should be a last consideration. take care. be well.

gene gbs 8-99
in numbers there is strength

GBS is dramatic, and because of this (I think) it causes us to revisit, question and probe for a reason as to why it happened to us, an:confused: d any connections to other events in our lives at the time.

Hi, Gene and all, I just wanted to give you an update. My dad is back at the rehab facility and his voice has come back since the 2nd round of IVIG (Yeah!). Our main concern right now is that my dad has lost a lot of weight in the past two weeks. He went from 126lbs down to 108lbs. Has anybody else experienced a rapid weightloss with GBS?

Also, does anybody know how and when GBS turns into chronic gbs? I cannot seem to find the answer to this.

Thanks,

Dawn

[QUOTE=gene]dawn,

prednisone is not for gbs, only chronic gbs [cidp]. however regular infusion of ivig should be tried [say every 6 weeks] first instead of prednisone for cidp. prednisone costs pennies. ivig costs $1000s. but prednisone has very bad side effects & should be a last consideration. take care. be well.

gene gbs 8-99
in numbers there is strength[/QUOTE]

Hey Dawn.

I lost alot of weight during my GBS/CIDP onset. I went from 175 down to 120 ish, and I am 6 foot. Once my treatment started and I started feeling better, my appetite came back and with rehab I started getting better. They usually diagnose CIDP versus GBS based on how long it takes to reach its worst point. Gene will be able to describe the difference better then I can. I wish your Dad the best.

Jerimy

[quote=stellarwnd]Hi, Gene and all, I just wanted to give you an update. My dad is back at the rehab facility and his voice has come back since the 2nd round of IVIG (Yeah!). Our main concern right now is that my dad has lost a lot of weight in the past two weeks. He went from 126lbs down to 108lbs. Has anybody else experienced a rapid weightloss with GBS?

Also, does anybody know how and when GBS turns into chronic gbs? I cannot seem to find the answer to this.

Thanks,

Dawn[/quote]

dawn,

gbs does not turn into cidp. docs 1st have to Dx cidp as gbs cuz they can’t tell at the beginning. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi, I live in Northern California also and was diagnosed with GBS in August 2005. I went undiagnosed for a few weeks before doctors figured out what was wrong and sent me to another county for treatment. I woke up one morning with my knees aching and then my elbows started aching, I thought maybe it was arthritis. Then it moved to my back, which to me was the worse part. Then over about a week, my lips and fingertips were tingling, my left arm almost all the way numb, then I lost the right side of facial muscle… At that point the doctors thought it was Bells Palsy, however they couldn’t explain all the other symptoms besides just the loss of right side facial muscle, :confused: but the next day I lost my left facial muscle too. By this time I have extreme weakness throughout my body, unable to eat, unable to walk on own. After bearly making it through that week I was taken to the ER and the doctor there knew something was seriously wrong and sent me to a neighboring County for help. There I was diagnosed with GBS and starting IV-IG about 3 days later and that lasted for 5 days. I spent a total of a week in ICU, 8 days in a regular hospital room and then about 10 days in a rehab hospital. I’m recovering well. Fatigue is a problem and I still have some facial paralysis, but after a year I am going back to work in about a week. Yippee! So what happened in your husbands case? Whatever the case is for him please tell him that as hard as it is to believe, it WILL get better. 😉 And if he’s as impatient as I am, it just makes it harder, but it doesn’t speed up the process. Hang in there!
Paula