No Diagnosis

The good news is that my son is improving. The bad news is that after a week at a Children's hospital and 3 weeks of follow up visits, they still have no idea.

He had a sudden onset of weakness and sensation loss on November 22nd. He woke up that morning with what we thought was severe heart burn and he looked ill. We were at a hotel at the time for a hockey tournament he played in.

He continued to feel sick and said that his legs felt weak. We had a doctor who is a team parent look at him and told him to take an advil and a pepsid. They said to have him warm up with the team and see how he feels. When he went out on the ice, he was teary and looked scared. He has never missed a game for illness so I just thought he was upset. He was walking fine at the time.

When he went to skate, he could barely stand up. My husband (who is his coach) had him come and sit on the bench for the game. After the game, he went out to shake hands and collapsed on the ice. He was carried off and evaluated by an ER doctor and a paramedic who were in the audience. He had some hits (nothing unusual) in his hockey game the day before. They did not feel there was any spinal trauma but that he had proximal hip weakness and had us go to the hospital near the rink (90 miles from our home). They did CT scan of the head and an MRI of the lumbar spine and they were normal. The doctor thought it looked more like a neurological disease than an injury and sent us to a Children's hospital near our home in Denver. Once he got his skates off, he could walk in an unsteady way to the hospital but 3 hours later, he could not even hold any weight on his legs.

When we got to Denver, they did a spinal tap and blood work that were normal. He could still sit normally and move his legs when laying down at that time. In the morning, he woke up and he could no longer move his legs at all. He had also become incontinent of urine over night.

They did EKG's, Chest X-Ray, MRI's of the head, neck, mid back and re-read the lumbar and sacral spines. All were negative. He had normal deep tendor reflexes for his entire stay as well. By that afternoon, he could no longer sit on his own and could not feel sharp/dull and hot and cold below his belly button. He could tell he was being touched but it was number than above. The, about 36 hours after it all started, he began moving his legs in bed and has made steady imrpovement since.

So they pretty much felt they ruled out GBS, the actually felt he had a psychiatric conversion disorder. Then, they did more testing on his bladder and realized he had a neurogenic bladder and that he could not have a conversion disorder.

We were discharged catheterizing him every 4 hours because he could pee but had a lot left in his bladder when he was done. We are still doing this but now only twice a day and his left over urine is getting just about normal now. He is now also getting wet in a pull up at night which he has not done since he was 3.

I am a physical therapist and wanted them to do an EMG in the hospital but they did not feel it was needed. Then they decided to do one this past Friday and it was normal. Of course, he is at almost normal strength now so I am not sure how helpful it would be. They never repeated the spinal tap after the first night this started.

So, he left the hospital walking with a walker and over the course of the 3 weeks since then he is now walking on his own, walking up and down stairs slowly and the bladder /muscle/sensation has improved over the 3 week period in a steady manner. He still can't run, jump etc. His calves are weak and his glut muscles. I do PT with him at home (imagine the poor kid with a PT for a mom!) and goes to a colleague once a week.

The doctors now want to go with the idea that he had a spinal cord injury during the hockey game the day before even though all MRI's were normal, even one taken 1 week later. He never had signs up central nervous system problems like spasticity, hyper reflexes etc. so I don't understand the latest diagnosis. They said that people with unusual (and mild) forms of GBS do not have bladder problems but the urologist today said they often do.

We are at a loss here. We are thrilled he is getting better. They never treated him with IVIG, steroids, etc. We just don't know how to plan for his future and how to possibly prevent this without a diagnosis. Does anyone have any thought given your backgrounds and any suggestions about what we should do next. I did ask his doctors if we should let him get flu shots and they all hesitated to say yes.

I know they are doing their best and are frustrated as well. I was just curious if anyone had thoughts about his case and if mild GBS can have normal LP (done right after onset) and deep tendon reflexes. Whatever he has is a rare form of something so we are just looking to others to help. We would like to get a second opinion as well. If anyone has suggestions from GBS experts, that would be great.

Being tired

my 12 yr old daughter had GBS in early Feb 07. She was VERY exhausted all the time for about the first 4 months or so. Gradually (and slowly) the exhaustion lessened and she could do more without feeling totally wiped out for days. Now (10.5 months out) she is at about 90% of normal and still improving. She is in school full days and doing well.

Everybody is different, but just know that eventually you too will get better. It may happen so slowly that you don't notice that you are improving. But I kept a diary about my daughter's progress and would often point out how much more she could do than a month or two or six months ago. That can help. It gets discouraging to feel so tired or to feel like you aren't getting any better.

As everyone will tell you, rest is important. Are you able to go to school or are you at home?

I jogged

After a painful six week introduction at home, I was admitted to a local hospital and diagnosed with GBS on March 28, 2009. I became paralyzed from the neck down, undergoing both plasmapheresis and IVIG treatments, over the course of 5 1/2 weeks. I spent the next 11 1/2 weeks in a rehab facility. On July 24, 2009, I came home in a wheelchair. I have since transitioned to a walker, to a cane and finally independent walking. How great it felt to walk again!

Those of you who know firsthand about GBS, know how devastating this snydrome can be. Each of us has a deeply personal story to share with others in the hope that together it helps make things easier for us. Many days, as GBS sufferers, our victories are small and almost unmeasureable. It's very realistic to doubt our progress at times. But it is my reassurance that with a positive attitude along with others factors such as faith, family, friends and therapists, our lives will improve. Please know that there are others who empathize with you, understand your ordeals, and that things will get better. My experience is alot like yours in that it got up to my neck and then to the top of my head on the right side. Was at U of M for 5 weeks then rehab for a couple months. I only had ivig and was tested daily for lung test. All is well but my feet that are Getting Better Slowley. Its been 2 years tommorow. I am 55 years old. I ran a marrathon in 1982.I ran that after I broke my leg. Its almost dejavu now to run again.

Social Security Disability Income

You can receive benefits for GBS if you a symptematic and unable to work for 6 straight months. That being said, it is not an easy process. SSI has a rule about denying applicants the first time. You will most likely be denied a second time too. On the third try, you will get a little more attention. I think that it is a way of discouraging people to not keep trying. In order to qualify, you have to prove that you have been unable, or see yourself being unable to maintain a job for 6 months or more. You MUST keep all your medical records because they will want copies of them justifying your not being able to work. Another key point is to have one of your medical doctor's agree to be your advocate. He/She should write a letter suggesting that you stop working or that you cannot work due to the stress level making you become symptomatic. If you cannot maintain a good quality of life because of the stress that working AND family life bring to you, you should not be working, but you have to pay the bills
A word to the wise::::::: You don't have to wait to not work for 6 months to apply. You just have to be able to medically prove that you will not be able to work for the upcoming 6 months

Breathing difficulty

I am actually a CIDP patient, not GBS.....but am stuggling to get the proper care and treatment for breathing issues I believe to be related to my CIDP. As the rest of my body has continued to weaken, as has my ability to breathe on my own. Many docs don't believe there to be a link between CIDP and breathing issues, only GBS and breathing issues. I am at a complete loss here. Have been in and out of ER 6-7 times, spent two days in the hospital, and have been to a pulmonologist who can't figure it out either.
I am sorry to hear that doctors believe that there is not a link between cidp and breathing. CIDP is a form of GBS. They will admit that. Sometimes there is not a real strong line between the two. When my daughter had what they thought was GBS, she had trouble swallowing liquids and had to be put on thickened liquids as it had gotten that far up. Sounds like GBS doesn't it? Guess what she is cidp now. She completely had to learn to swallow again, sit up, crawl and eventually walk again. Sounds like GBS and not cidp. There is a very fine line sometimes!!!!!!! Read the recent post by Julie Ann's mom for more.