I don't understand -Help

Hi: IVIG is the normal treatment for GBS and, while it can’t cure the disease, it does help slow it down and protect the body. If your mom really has GBS the disease itself lasts only a few weeks, but it can leave damage to the body that may or not be permanent. Most people recover to various degrees and so should your mom. After I had the disease I was in rehab for 4 weeks learning how to walk again. Is your mom in the hospital? She needs to be periodically checked to make sure the disease does not affect her ability to breath. She really should be in the hospital. At any rate the treatment is not harmful and should help her. At the worst it won’t do any good but usually it does. I am sure other people will respond as they learn the forum is back on-line. This is a great place to have your questions answered.
GBS takes a long time to get over and healing is very slow. You and she need to patient and allow the body to take whatever time it needs to heal. The great news is that most people do heal, not always completely, but they get past where she is now. Keep the faith. Jeff

ASStreib,
As Jeff said, your mom needs to be in the hospital. Treatments of IVIG or plasmaphersis are the treatments usually given for GBS. She should have rehab and support from loved ones. Reapeating Jeff again, healing is long and slow. Be patient and give her support.
prayers for continued recovery
Shirley

My son got it on Jan 18, 2012. He lives an hour away from metro Atlanta. He went to the town hospital where he almost died of respiratory failure because they could not figure out what it was. He was sent to Atlanta by ambulance and was given ivig the first 5 days and is now getting 5 days of plasmaphersis. He was totally paralyzed, is on a ventilator, but now can move his mouth, head, and he can swallow again. If you’re in a small town, take her to the nearest metro area hospital. Small hospitals do not know, nor have the resources to treat it. Goodluck, it is a scary illness.

nkolb,
Your are correct GBS is relatviely rare and in local hostpital the may very seldom if ever see a case . If the symtoms fit you should get to a major medical center. I spent 2 weeks getting local referals and felt I was getting run around in circles….still getting worse. At that point I went to a major hospital and was DX’d in 12 hrs and the treatment started that night.

Hi all,
I’ve just found the gbs-cidp site and am relieved to find both it and the forum as the past month has been a huge learning curve for myself and my family. On New Year’s Day, my mom said her legs felt rubbery and her fingers couldn’t sense feeling like usual. After hours in ER and lots of tests, the neurologist on call determined that while my mom’s symptoms didn’t completely fit GBS, all the tests had ruled out any other possibility. She spent a week and a half in the hospital receiving IVIG treatment and being closely monitored – thankfully, her breathing was never in danger. Then she was sent to a skilled nursing facility and immediately began daily PT & OT. After being there for just over a week, my mom was seen by her neurologist for a follow-up visit and it was determined that there wasn’t enough improvement so she was readmitted to the hospital for another week and a second IVIG treatment, after which she returned to the skilled nursing facility. Thirty days after her initial diagnosis, a second neurologist administered nerve conduction tests and determined that the nerve damage was extensive and ongoing. In their opinion, she will not improve.

As all of you can imagine all too easily, this is terrible news. On the one hand, I’m grateful that the neurologists appear to be following my mom’s progress closely, despite the depressing prognosis. On the other hand, in reading forum postings and other information on GBS, I keep wondering whether they’re making a long-term prognosis too early. I’m not looking for medical advice since that’s available from a number of people near me, but having access to this forum will hopefully be a resource. Sometimes it all feels pretty overwhelming.

Hi Biblios: In my opinion it is too early for such a diagnosis. I have heard it given to several people for whom it wasn’t true. It takes two years to get an idea of how much will come back. I wonder why, if it is GBS, that nerve damage is worsening after more than 30 days. GBS is acute, not chronic, and usually is over after three weeks or so. I continued to worsen for about 17 days,but IVIG didn’t work for me. You might ask the neurologists about this. In any case, with GBS a lot can come back, though, of course, often not all. There is often lasting nerve damage but don’t give up hope yet. It takes a long time to recover from GBS and much too early to accept such a discouraging prognosis. Best to you and your mother and welcome to the forum. Jeff

Jeff,

Thanks for your comments, I really appreciate them. My husband and I have talked quite a bit about this diagnosis and wonder if we want to disagree because we don’t want to hear such bad news, or because our instincts are telling us that it might not be accurate. Case in point: last week my mom was in a great deal of pain and could barely move her arms and legs. When I saw her yesterday, however, she was able to move her arms much more freely and had much less pain. I’ve asked the neurologists a couple of times whether it is too early to make such a diagnosis, and they feel that because my mom hasn’t responded to either of the IVIG treatments, she won’t improve. I’m considering asking for a second opinion.

Do you know if there is a local chapter located in the Portland, Oregon metro area? It would be enormously helpful to be able to meet other people in our area. Thanks again.

Hi Biblios: I don’t know about Portland. But I didn’t respond to IVIG either, so the doctors sent me to rehab rather than try it again. But I got better. I think I would have gotten much better if IVIG had worked for me, but I regained the ability to walk for short times and most of the numbness in my legs is gone. So you can get better even without IVIG. I think I would try for a second opinion. Jeff

I found the Facebook page for GBS/CDIP International, and someone there pointed me to people in my area. Also, I’ve emailed the Brain Institute at a teaching hospital here in Portland, asking whether they would accept my mom as a patient in order to provide a second opinion.

Good luck with your diagnosis, too, Jeff. I read another posting about your cancer diagnosis.

biblios.

I agree with your decision to have another opinion. The severity of GBS will vary from one person to another but from my experience it would seem very difficult to render a prognosis of the ultimate outcome in its early stages. Most cases I have known of, including my own, have undergone a slow recovery period lasting from several months to a year or more. Recovery is also quite varied with some achieving basically a total return to normal while others are left with some long term residual effects. My own case took about a year and I was left with numb feet but otherwise returned to normal.

Hi ASStreib,

Welcome to the forum…..It is important to remember that no matter what treatment your mom has been given, it will take a much longer time for her to heal than the time of initial onset. The recovery may be hard to measure at first, don’t be discouraged, it is simply the healing nature of this illness. It took me 5 months to walk again…..now i am running 20 miles a week and nearing my 3rd anniversary……take pleasure in any victory no matter how small!

And to Biblios…..it does sound premature to say that there is little chance of improvement. I had an EMG test done to help confirm GBS, as I was not plateauing. After plasmapheresis did not work, IVIG was initiated and started me on the road to recovery. It’s important to remember that each person is affected differently, Don’t give up hope that she will improve. Patience is needed to combat this illness and lots of love.

Wishing good things for both of your moms………stay positive:))

Tom and Hutsky,

Thank you both for your comments, it’s very helpful to have others agree that a second opinion is worthwhile. The good news is that my mom IS improving, albeit very slowly. Two friends who hadn’t seen her for 3 weeks visited yesterday and were delighted to see the changes in her. I look for these each day and cheer her on when I see even the smallest thing, like being able to tap fingers together. Those are huge!

The other piece of good news is that yesterday I remembered a family friend who is a neurologist at a local university hospital. While she does not treat GBS, she willingly recommended two colleagues who do treat GBS patients. We are all greatly relieved with this; it feels good to be moving forward on finding a different neurologist.

Finally, GBS-CIDP Foundation Int’l sent me a packet of information which contained an article about pain and GBS. The timing was perfect as last week my mom reached a new part of the acute phase which is even more painful (which I didn’t think possible). The article on pain spoke to this specific pain which was reassuring to my mom.

Thanks again for your good wishes. What a cruel disease!

Biblios,
That’s very encouraging to hear that your mom is improving. I can still remember the joy of being able to roll from side to side on my own, as a part of my recovery. The things that healthy people take for granted, a GBS patient never will. Indeed GBS is a virus that no one would wish on another. It’s great that you are educating yourself to better understand the effects of this virus. As an advocate for your mom, it is important that she understands that she is running a marathon rather than a sprint as she recovers. In time good things will happen. Take care

Heh – being a librarian, it’s second nature for me to find good sources of information that will help me better understand things! You’re absolutely right that healthy people take so many things for granted which GBS patients never will.