GBS or CIDP/AIDP

[CSX2]

Guillian Barre Syndrome (GBS) more formally known as Acute Inflamatory Demylenating Polyneurapathy/Chronic Inflamatory Demylenating Polyneurapathy. Rare neuromuscular disorder.

I've had it for over two years now and never met anyone else that has been diagnosed. Guess that's not unusual since it effects only about 1 in 100,000 people. Just wondering if anyone here has been diagnosed or knows someone who has. Wondering about other's symptoms, treatments, and coping strategies.

 

[bevgray]

Hi there. Not many of us around as GBS is very rare. I had the combo GBS/MFS (Miller Fishers Syndrome) 30 years ago this March. Not fun to deal with since I had total paralysis from head to toe but I've muddled through all these years. In my case, there was no treatement since the blood filtering wasn't in use then nor was there much physical therapy support. Upon release from the hospital, I was pretty much on my own.

The key is, since nerve damage is involved, when you feel drained/tired, don't hesitate to give in to it. Unlike tired or sore muscles, there is no real way to "build up" the nerves. They will heal at their own pace.

Were you hospitalized with yours? On a ventilator? Total paralysis, partial? All of these can factor into your recovery. For many years, it was thought that patients recovered fully. Now it is thought that, like its cousin polio, GBS does leave a survivor with residual effects. Dr. Gareth Perry at the University of Minnesota medical school has written several articles regarding post-GBS. Just do a search under his name and some of the online articles will show up for you.

One thing to avoid as much as you can is any kind of stress as that seems to aggravate any residual symptoms.

Good luck and don't worry. 30 years later, I'm still on my feet (can even manage all of Future World and World Showcase if I take my time) as well as work a full-time job.

Don't hesitate to PM with questions. It is a frustrating disease but it is manageable. I find the most difficult aspect of it, now that I'm in my fifties, is trying to determine what are new symptoms (i.e., new disease such as RA) or what are old symptoms that are just worse now that I'm older.

 

[CSX2]

Thanks for posting.

I guess what my neuroligist said about GBS is true - there are as many variants as people diagnosed. Mine has been categorized as the chronic version (CIDP) - I never reached the level of paralysis you suffered. My paralysis was confined to my arms and hands. At it's worst I could barely manage to lift a toothbrush. Fortunately my neurologist diagnosed the syndrome quickly (after blood tests, spinal tap, and nerve conduction studies) and prescribed Intravenous Immunoglobulin (IVIG) treatments which worked immediately and returned me to full strength. Only problem is, the paralysis returns every six weeks like clockwork. After 2+ years the cycle has remained stable and so as long as get the IVIG on time I suffer no symptoms. Unfortunately, the treatments are extremely expensive and I've racked up over $200,000 in hospital bills - still fighting the insurance company on a big chunk of that total.

 

[bevgray]

Yes, that is tough that you have the chronic version. Still, there is a lot more knowledge and more that the doctors can do for you. Sounds like you've already learned the most important thing...learn your body's tolerances and recognize the symptoms. Best of luck!

 

[ut*disney]

They thought my mother had GBS, but diagnosed her with Transverse Myelitis. By definition, TM is a condition caused by inflammation of your spinal cord. "Myelitis" refers to inflammation of the insulating material that covers the myelin (nerve cell fibers). "Transverse" refers to inflammation across the width of your spinal cord. If the myelin becomes damaged, the communication relayed between your spine and the rest of your body becomes interrupted.

TM usually occurs at the onset of a viral infection.

Some symptoms of TM are pain, numbness and tingling, weakness in your arms or legs, bladder/bowel complications, muscle spasms, headaches, fever, and/or loss of appetite.

The doctors thought she had GBS because they can mimic each other.

My mother was diagnosed in November 1999 and passed away November 6, 2005. My mother was paralyzed from the waist down on her right side. It was a hard, tough road for her.

Good luck to you all and God bless!

 

[JCLNJ]

My 17 year old daughter was diagnosied with GBS 2 months ago. She started having numbness in toes, hands then up to knees. Within 3 days she was having problems walking and I took her to our family doctor. She believed it was GBS and told me to take her directly to emergency room. She was seen by the neurologist and admitted to the hospital. she had CT scan and a 2 1/2 hour MRI that day. The next day had the spinal tap and EMG test. Based on results she was diagnosed with GBS. Started the 5 day IVIG treatment. She got worse before the medication kicked in at one time could not lift arms up off bed or feel her legs. Then one morning she lifted her arm up and has continued to improve every day. She was in the hospital for 10 days and then was transfered to a children's specialized hospital for Physical, occupational and recreational therapy. We had asked how long they thought she would be there as we had reservations to get on a plane to Disney in 2 weeks. She worked hard to improve and we were able to get on the plane to Disney. During our stay at Disney she used a wheel chair to go to the parks and a walker around the room. During our stay she was able to go from sitting to standing without the use of walker to pull herself up and use of her hamstrings. When we returned home she stayed home for 1 more week from school and then went back half days for 2 weeks. Last week was her first full week of school. She is now able to walk without the use of anything and is going to physical therapy twice a week. She has gotten most of her strength back.

This was hard on her because this happend right before she was going to swim in the state championships. The doctors believe she recovered quickly because she was in such good shape. She is going to the prom in 2 weeks and is happy that she will be able to walk in. This has given her and us a whole new look on life as to how lucky we are. It was upsetting to her to have everyone stare at her while she was in a wheel chair. She had wanted to go to college to be an occupational therapist and I believe this experience will help her to pursue her goals.