I feel for you about the doctors.. I've had to learn about this disease using the computers because the doctors were clueless.. I would suggest finding a neurologist and talking with them.. I only know of 2 treatments for this IVIG which I had and the plasmapharesis which from my understanding is a process to filter the blood. Past that there are some meds they do prescribe like gabapentin. Pretty much what this disease is is your own body's immune system attacking the covering of the nerves so that the brain cant send messages to the limbs and sometimes the diaphragm as well.. it's like stripping an electric cord to a lamp and plugging it in.... you'll see the electricity but the lamp will never turn on because it has nothing to direct the flow... Hope this helps you in some way

GBS is a condition that not a lot of people are familiar with. I got GBS in April, spent 2 months in the hospital, 4 weeks of which on a respirator. Everyones case is different. I had plasma thereisis in the hospital. Now I am home with several meds to control pain.I walk with a cane. My husband has been awesome by my side. You need support. You can check out the GBS/CIDP foundation on line www.gbs-cidp.org .They will send you a packet of info and there are many things to look at on the web site. Good luck to everyone who has this.

Hello and Thank you both for taking the time to submit this personal information for my father in law.

If you don't mind, I do have an update from him today, and wanted to ask you guys how you were diagnosed with GBS?

Was it by a blood test?

When he was first diagnosed late last year, he was not given any treatment or medications, only therapy.

Now he's being seen once and awhile by this clinic, and the last time they saw him, like maybe a month ago, they took 8 viles of blood from him, and they are only waiting for the one left to confirm if in fact it is GBS.

So now they are saying it's not it?
So this is why I was wondering how you were officially diagnosed with GBS.

When I first had all of his symptoms by phone upon him getting hospitalised late last year, I stumbled on this diagnosed, GBS.

He was also told thereafter that it was indeed this GBS and now almost a year later, they are saying it might be a virus???

Do you understand this???
How can they say it was GBS and 1 year later say it's not???

Please someone enlight me on what to think now about this????

Thanks for the link, I have ordered the packet of information for him. Just got off the phone with him and he is soo happy I am taking some time for him.
It makes me soo sad, he's an older man now, and alone in his quest, it seems like his doctors are soo useless.

He is being followed by a rheumatologist, and he wants off some of the pain pills cause they do affect his immune system, what do you think about this????

Then he will be in pain, like it's a no win situation, it seems. :(

Thanks in advance for your response, it helps me tremendously.

Mckenzie,
One day at the time.

GBS, is a difficult condition, many doctors and medical personal do not know personally about the illness. Typically only read about it in books. my GBS came from mono so I cannot say my round of treatment will be or should have been the same as what could have been done in this case. He should have had IVIG or Plasmapheris. Because of the mono, I had to have the plasma. Typically the illness does go away on its own, I have been waiting three years for that but slowly I am getting there, and dealing with the other symptoms through a pain management clinic. In suggest since your concern is great, to get a second opinion, look up doctors with the credentials for GBS, this can be found by looking on the web, type in google.com and neurologists in your area or call the local offices and just ask. It doesn't hurt to get a second opinion, I am on my 10th doctor so don't far. My prayers are with you. If you need anything else ask away

Thanks Rissa,
I spoke with him the other day, and he's soo confused, now they are trying to say it's not GBS.
I told him not to let them go and to get them to test him again, and again, until they do find what it is.
I am still convinced it is GBS.
How can one year ago they tell him he is affected by it, and now they don't know.
Some Doctors today just don't take the time with their patients, especially if they are older.
Thanks, for your input.
Love & Respect,
Mckenzie
One day at the time.

I was diagnosed with GBS by having a spinal tap done.They found protiens that indicated that I had GBS. I then had the plasma theresis done 5 times. I was on a respirator, and in the hospital for 9 weeks. I am glad you sent for the packet, I think it will help you.

Baterie1

Thanks for your output and experience, I will eventually bring him a hard copy of all of your replies, you are a tremendous help to me, you cannot believe how much.
I appreciate everyone of you who has reponded to a post from which I had no idea of how this illness occured or even existed, so thank you from the bottom of my heart.
Mckenzie
One day at the time.

that is why they call it practicing medicine!
my oldest daughter had G.B. back in 1979, when she was 4 years old. they diagnosed her with 2 spinal taps. if i remember correctly, the spinal fluid showed elevated protein which indicates GB.
i was told...she will either get better or die. after a long hospital stay with much physical therapy she was able to come home. the PT had to be continued in order to try to prevent muscle damage/loss. she is now very flat footed and still has upper thigh pain. but she went on to walk again, ran track, and is now 34. she has just had 4 month old twins! so life does get better.
i think i would get a second, even third opinion. do you have a teaching hospital near to you? my child was treated at emory, in atlanta, and received wonderful care.
i wish you the best and am always just an e-mail away.

Hi,
I actually have CIDP, the chronic long lasting stage of GBS, renamed because it's different. I went through the bloodwork and all the others, but it was the spinal tap/lumbar puncture that diagnosed me. You may want to look for another doctor. It's not wrong to get a second, third, fourth, etc opinion. I went through eight neurologists and I did find a great one. Buy a book called NUMB TOES AND OTHER WOES, it's simply written.
Liz

Thank you Grandpam,
So sorry your 4 year old child has been through soo much.
But there is hope if she is now 34 and things are going well.
Unfortunately for my father in law, he is in his 70's, but I will advise him to get a second opinion and third.
Thank you, and congrats on your grandkids, twins are too much.
Love & Respect, Mckenzie
One day at the time.

Reply #9 - 09/24/08 11:13am

Hi,
I actually have CIDP, the chronic long lasting stage of GBS, renamed because it's different. I went through the bloodwork and all the others, but it was the spinal tap/lumbar puncture that diagnosed me. You may want to look for another doctor. It's not wrong to get a second, third, fourth, etc opinion. I went through eight neurologists and I did find a great one. Buy a book called NUMB TOES AND OTHER WOES, it's simply written.
Liz

Hi Lizmay,
Thank you for your reply.
I did get a package of litterature sent to him a few weeks ago.
But this book sounds really good, and he loves to read, so I will get it for him.
See this is what he's afraid of, he already had problems with his lungs, and now he's soo scared of paralizing to the point he won't be able to breathe.
Thanks for your reply my friend.
Love & Respect,
Mckenzie
one day at the time.

Hi!
I also have CIDP which is the chronic form of GBS.I was diagnosed with GBS in 1999.Mine started after a viral attack.It can also be triggered by immunizations and pregnancy.They do blood tests to rule out other conditions.They usually also do an MRI and lumbar puncture.They started IVIG treatments on me then and later did a nerve conduction study to confirm the diagnosis.The earlier they start treatments the better the outcome.I learned to walk again after 6 months of rehab.I was able to go back to work fulltime.They think repeated surgeries for another condition triggered my relapse several years later.I get IVIG infusions every other week now.
Your father in law is fortunate to have you supporting him through this.Family is so important.Will keep him in my thoughts and prayers.