Hi am new to all this

[COLOR=black][FONT=Verdana]Welcome to the board Sal. I’m sorry you had to find us but trust me this is the best place to find information on GBS. I remember when my Mom got this wicked disease I was so grateful for this site. GBS can be a one shot deal but it takes time, a long time. GBS = [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly period. Please give us some background on what lead up to the diagnosis (Dx) and how you Dad is currently being treated. There are many people on this board that will help! 🙂 [/FONT][/COLOR]
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[COLOR=black][FONT=Verdana]KC[/FONT][/COLOR]

Hi Sal, welcome to the family, sorry your dad had to become a member of this type of group, but i’m glad you found us. feel free to ask all the questions you have, someone will always be able to help you. there is no cure for gbs. you might want to give us more information on the type of treatments and tests that your dad has had, if makes things easier to answer. take care.:)

Hi Sal,

Welcome to the forums. Sorry to hear your Dad has GBS. No cure only treatments to help stop the nerve damage. 2 types of treatments are out there, one is called IVIG (IV Immunoglobulins) an IV that is given over 5 days.
The second choice is called Plasmapheresis which is alittle more of an intense treatment. Has your Dad received any of these treatments?

Next, pain can be extremely intense because the myelin surrounding the nerves has been damaged. Some patients do not get any pain. Then there’s the vibrations, like a pager going off, it travels through the damaged areas.
He could possibly have trouble eating because he can’t swallow properly, he may not want anyone to touch him because it sets the pain soaring through the body.

These are just some of the nastiness that goes with GBS. It sometimes takes years to heal and then we have others who heal fairly fast. There will always be exhaustion, pure exhaustion. The patient will sleep for hours and hours.

Could you please tell us a little more about what your Dad is experiencing and any treatments he might have had.

Wishing him the best. 🙂

hi sal & welcome,

as bad as gbs is/seems, recovery to different degrees is high. take care. be well.

gene gbs 8-99
in numbers there is strength

Welcome Sal to this forum. I just wrote a long message, and acidently lost it, so for now I will just say welcome. Will be following your messages and your dad’s progress. I will pray for him.
Mary Ann

sal, the 5 days of ivig is the way to go. it will not cure but has a good chance of stopping the gbs progress. take care. be well.

gene gbs 8-99
in numbers there is strength

I’m not positive, but I think what your father is receiving is IVIG treatments (Intravenous Immunoglobulin Therapy). These will stop or slow the progression of the nerv damage. Basically what I understand is that GBS is when your body starts to attack the nervous system, and in many cases starts in the back, feet, legs or hands.

This website is full of tons of info, and they have information available to patients and caregivers of those with GBS. The number of affected patients with GBS that recover is very high, so keep positive that your father will get treatments, start physical therapy & recover fully. And in the meantime, learn as much as you can about this weird disease. The more you learn and can take in to your father & his doctors, the better off you’ll both be!

Michelle

Hi Sal,

IVIG is not painful. The needle for the IV is put into a vein and the drip is then started. From what I understand the other treatment of plasmapheresis is painful. Ask alot of questions of the drs ,write it down if you have to. We will always try to help you understand what’s going on, that is why my earlier post explained a few things that can happen with GBS.

Take care Sal. 🙂

I think what you are doing by gathering information is to be commended. You will be of great benefit to your Father and his recovery. Being informed will help everyone to understand the progress of this illness.

The IVIG is usually fed into a pickline which stays in the person and makes it easier to take blood and administer medications. Your Father will be more uncomfortable from the GBS than any of the treatments. He will be very tired from the GBS and after the IVIG he might need a little rest.

Check out some of the links on this site they will give you information about the illness and also some suggestions about what the caregivers need to do to help a patient when in the hospital and also when they arrive at home.

Please continue to post to let us know how your Father is making progress!

Hi Sal,

Good to hear your Dad has no pain, that is a blessing believe me. It would be great if he joins us after his release from the hospital. Then he can ask his own questions that he might have.

Take care and give him my best. 🙂 🙂

Glad you gave us a possitive update on your father!

Just remember that he will do alot of sleeping and be very tired and has to be sure he does not get exhausted so a computer might be something he has to ease into.

As for the transportation, check into getting a disabled tag for parking spaces and also check into acess to public transportation in your area for disabled people and senior citizens.

I contacted our local hospital and got that information from a social worker for free.

Might be en inexpensive way to provide transportation till someone is able to drive them both around.

Welcome Sal,

No, the IVIG is not painful, necessarily. It wasn’t for me, at least, (and I don’t do pain well, I am a big worrier):) All the testing he went through, is worse. And, his body is dealing with the “bigger picture”, the attack by his own antibodies. So, the IV prick is pretty minor.

IVIG is the least of the invasive treatments (the other being plasmapheresis). IVIG is very helpful in stopping or slowing down the damage being done. Your dad will be fine…..it is just going to take time and a LOT of patience on your’s and his part!!! You are in for a LONG ride, so hold one and pray!! We will all pray for you and your dad as well.

Perry

No, there is no cure, but it can be treated (via IVIG, PLasmapheresis). And don’t worry about reoccurence……………only 3-4% anyway!! Just think positive!!!

Medications: Neurontin for nerve pain and vicodin for any other pain. Many of us are on Neurontin for a long time!! Everything will be all right 🙂

Perry

sal,

as perry says only abt 3% of gbsers get it again. what usually happens it that you get better slowly of your own doing in your own time. mucho, mucho rest is important. the tortise wins this race not the hare. residuals, the nasty leavings of gbs, slowly leave but if you annoy them, ie. over do it, they can come back w a rengence. take care. be well.

gene gbs 8-99
in numbers there is strength

This is to All,

Thank God, this forum is back up!!!!! ……with Newby’s coming on, and needing help……………. hopefully, we can comfort them, and give them some of the answers they are searching for.
Welcome Back Everyone!!!!!

Perry

Sal,
Lots of info on GBS on the UK GBS Support Group site.

Click on either of the links below and the info should appear ready to print out and read at ease (if any available just now.)

[URL=”http://www.gbs.org.uk/info/gbs.htm”]http://www.gbs.org.uk/info/gbs.htm[/URL]
or [URL=”http://www.gbs.org.uk/info/gbs.pdf”]http://www.gbs.org.uk/info/gbs.pdf[/URL]

Sal,

Welcome to the website. Sorry to hear about your dad. I live in South Australia and there is a support group in NSW where you are. It is called the GBS Association of New South Wales and if you would like to give them a call then they will be more than happy to answer your questions. Their number is 0298691839. It is a Registered Charity and free to ring.

Hope this helps.

Cheers Debbie

sal,

the library is prolly useless – not enough & outdated info. kens gives you the uk site which has some the best info. your dad will get better. take care. be well.

gene gbs 8-99
in numbers there is strength

From what I have read GBS follows a bacterial or virus infection when your body is run down. It can also follow getting a flu, polio or tetnus needle. Or after eating under cooked chicken or eggs or a bout of diarreaha. Sometimes since it can be weeks before the GBS shows up it is hard to trace it back to what it may have followed. Mine was thought to be a sinus infection that I had shed before I had to call the doctor. I did visit my Dentist a month before I come down with GBS after getting my teeth cleaned. That could have caused an infection in my gums too! I spend very little time trying to think what the GBS followed now! I would be only guessing at this point!

Well wishes to your Dad and his care givers!

Sal,

There are many possibilities for the cause of GBS but in your Dad’s case it may very well be the flu vaccine. For me, GBS started 5 days after I had my Hep A/HepB vaccines. Each person is different. No one really knows why it happens in some people and not in others.

Best wishes to your Dad for a complete recovery. He is lucky to have you to help.

hi! best wishes to your fathers recovery! you can read other stories @ [url]www.aboutgbs.com[/url] story #2 is mine as i was knowed as survivor 48! so glad to hear of your fathers progress yes dont have him do too much even though itis soooo tempting for him ! ,,it will only set him back! gbs= getting better sloooooowly!

best of luck and these forums are great ,glad they are back up!

survivor 48 [scott]

Hi Sal,

You can definely get GBS from the flu vaccine or any other vaccine. My husband was one of the unfortunate ones who got GBS from the flu vaccine, within 8-10 he was already sick.

Hi Sal;

I am sorry you had to contact this group but rest assured you are in good hands. My father was diagnosed with GBS close to two months after a flu shot. I say diagnosed only because it took my own pleading with doctors and a notebook full of information gathered from this forum to convince them that he wasn’t having strokes. I know just how alarmed you feel or felt. I had no knowledge of GBS before this and I don’t know where he or us would be if it weren’t for all these wonderful and well informed people on this forum. It sounds like your dad is on his way to recovery. I am thankful that I was able to convince my dad to listen to the wealth of knowledge I found here and he is recovering very well by doing so. I think my biggest relief was finding a nuero who we could trust and would listen to our concerns. Both you and your father are in my prayers. Take care.

Tina

Hi Sal,
I hope things are going OK with your Dad. It’s scary when a parent becomes ill – especially with something as long term and unpredictable as GBS – we tend to think they are invincible! My Mum was finally diagnosed last November and is now going great guns (thank goodness) and this site has been a wealth of information. What we learned to do very early on was to ask questions, and to ask them again and again until you get an answer that you understand. GBS is complicated and different for everyone, and a good doctor will not mind answering your questions more than once. I have a sister with MS so we have some understanding of neurological stuff but even so GBS left us floundering for a while. Keep your chin up and keep in contact with your Dad as much as possible. I live in the same area of Sydney as my Mum (which has been such a blessing) but staying in touch however you can is so important. Take care of yourself too. Best wishes. Cathy

sal,

neurontin or lyrica for pain. take care. be well.

gene gbs 8-99
in numbers there is strength

Sal,

I am glad that your dad has been moved closer to you. It sounds like he is doing really well. With your continued support and love he will continue to improve. It is quite a slow process GBS as I have experienced. Try to tell him to take it slowly. We all try to do too much and it is detrimental to us in the long run.

Best wishes
Debbie