OUR STORY AND ITS A VERY POSOTIVE ONE>>>>PLEASE WATCH
Terry,
Your story sounds very similar to mine...but I still have a long way to go. I was diagnosed June 5th.
Thank you for sharing your story it has inspired me!
Jo
Terry said:
I am a 64 year old female and I was diagnosed with GBS in early May 2013. Though it came on very quickly, my legs were paralyzed within a week, it did take a week before I was able to get in to have 4 MRIs performed to realize that is what I had. I was admitted to the hospital and had the 5 days of IVIG treatments and then was admitted to Rehab for another 11 days for Speech, Occupational and Physical Therapy. It was very intense, 3 hours each day, but I was finally released to go back home. I was using a walker, could do some cooking and dress myself. My hands felt like they were asleep all the time. I had lost 15 pounds in two months because the thought of food was just nauseating. But within 3 weeks, I went from doing things for myself to being totally dependent. Well I shouldn't say that because my husband, Steve, was absolutely fantastic! He checked on me regularly, had to learn how to run the washer and dryer and even learned how to put some meals together. I was feeling so helpless but then I had a relapse and was having difficulty walking and climbing our stairs again. If it weren't for Steve being my advocate, I don't know what I would have done. He took me to Emergency once again because my Neurologist was on duty. Dr. Foley admitted me and started the 5 days of IVIG treatments again. I had to return to Rehab for 5 days of Physical Therapy. This is where my Success Story begins. I had started walking like a duck before I was admitted to the hospital for the second time but after the re treatment and physical therapy, I was walking normal with my walker. After a couple of weeks of seeing my P.T., I was able to walk with a cane. I used a cane for less than a week when I felt I didn't need assistance at all. I was able to get back to driving with confidence and even went back to Curves for Woman with no restrictions. My handwriting was atrocious since I didn't have feeling in my hands. My Occupational Therapist gave me a tablet to practice writing and now I am able to write like my pre-GBS disease. I, of course, did have the agonizing pain initially when my nerves started to regenerate and had a few moments where I was really sad not knowing what I was facing for the future but I feel so blessed. My family and friends were totally supportive and never made me feel as worthless as I felt. I will always remember the care, support and most of all the prayers everyone said for me. I totally believe each and everyone was heard by God and it lead me to a speedy recovery!
Before I was aware of this website, I had no one I could go to for answers. My regular M.D. had only one GBS patient 20 years before so she was struggling with answers as much as I was. My Neurologist was able to guide me but I only saw him 3 times. I found out that when people don't understand what you are going through, it makes them uncomfortable and they don't want to talk or even listen to what you have to say. It made it very difficult and lonely. I tried not dwelling on the subject but I couldn't help having my mind continually wondering how this would all end. My M.D. did put me on a small dosage of Zoloft. I never felt suicidal but she felt I should probably have something. I recommend it for all GBS patients.
I do want to make a recommendation and that would be, you have to be your own health care advocate. As I said, my husband was mine but not everyone is as lucky as I am to have the love and support he provided. Not enough doctors are familiar with this disease and that is why it is so important to get the tests run so they can figure out what treatment is necessary.
My heart aches when I read stories where patients are in the hospital for extended periods and they don't have what they need to recover quickly. May God bless you all!
Terry Donnell
On Jan. 19 2015 I was taken to the E.R. and with in hours diagnosed with GBS. My symptoms were tingling in hands and feet, tingling in face and tongue and lack of coordination to walk. I had spinal tap to confirm diagnosis and was started on IVIG treatments the next day. By day three I could not walk any more and on day 5 I went into respiratory failure and was put in an induced coma. I did not respond well to the 5 IVIG treatments that were given. I was transferred to another hospital that was capable of giving plasma treatments. Over the course of 2 weeks I was given 6 plasma treatments. I was ICU and on the ventilator for 2 weeks and contracted pneumonia. This brought me down to the point that I was surviving day to day till the antibiotics killed the pneumonia. I was then trached and a peg line inserted. After about 3 days on the trach ventilator I started breathing on my own and was taken off ventilator. A few days later I could use a walker to go about ten feet. After 1 month in the hospital I was discharged to a rehab hospital, that gave me 3 hours of therapy a day. After 1 week in rehab hospital I could walk 150ft. with walker and bathe myself and was discharged. Then I had 1 month of outpatient therapy . I could now walk on my own and was back to driving, still had residual tingling in toes and fingers . On April 1 I started back to work for 4 hours a day. For about a week it was exhausting but I was determined to keep going. Each week that went by I saw more improvement and less tingling in toes and feet. I now do not have any residual effects and feel like I did before GBS. I believe that an early diagnosis and plasma treatments were fundamental in my recovery. For the weeks that I laid immobile, my family came everyday to exercise my arms and legs which kept my joints flexible. I had to learn to walk and bathe, keep my balance, and write again, there is hope for regaining everything like I did. I had many people I knew and didn't know praying for my healing. Fortunately I had a great team of doctors and nurses who understood GBS and what to do. Don' t give up I was initially told it would be at least a year for my recovery but I amazed everybody.
Thanks for the success stories. My daughter is on week 12 and hoping to be off the vent next weekend. It is good to have some positive stories to read to her. Would love to hear more!
Hi Judy,
When I was getting ready to come off the vent, my first day off went fine then I would go back on for night time.
The second day off the vent I was coughing a lot and in the afternoon I had to go back on the vent for the rest of the day
and night. The next day I was fine off the vent and in a few days I was taken completely off the vent. Best thing to do is keep a positive attitude. We all heal at a different speed, it can take along time for her nerves to repair themselves so don't get discouraged. I hope the best for your daughter's recovery.
Judy said:
Thanks for the success stories. My daughter is on week 12 and hoping to be off the vent next weekend. It is good to have some positive stories to read to her. Would love to hear more!
My 12 yrs old was diagnosed with GBS in February 2014 after a month of pain & weakness. Her legs were paralyzed, her arms were very weak & 1/2 of her face was paralyzed as well. She was given IVIG & hospitalized for a week. She was able to walk short distance a month afterward. But it took more than 5 months for the pain to go away completely. However, she seems to get tired a bit more easily than an average 12 yrs old. Last week she came down with a bad cold & most of her pain came back. The pain is gone after her cold got better.
I guess she is young & has a better chance to recovery completely. Even though her pain may come to haunt her every now & then. I consider her case as success story. The whole ordeal helps both of us to be more grateful to what we already have & knowing we are better off than a lot of other people in the world. And we learnt not to take simple things in life for granted.
I don't get to post here often but I wanted to update folks and reaffirm the positive. I am amazed it has been since 10/1/13 that I started down this path of remission. I am doing pretty good, all in all. I am one of the luckier ones that had a quick initial recovery and was able to walk within 3 months (sort of). I have not missed a beat since. I continue to work long hours and still pull my camper to stay in while I am working. I feel much less tired and have learned a lot about my limitations. I'll share what I have learned and maybe it can help someone?
Sandi's GOOD list:
Sleep is crucial. Good sleep and lots of it.
Water stops leg and feet cramps!
Eating well is just as important.
Moving around physically. Yep that helps.
Refusing to get negative and always putting the "I will beat this" attitude out there SAVED me.
Sandi's BAD list:
Alcohol - causes pain for days, even beer (but I still love it)
Smoking - causes pain in my torso, legs and feet (still do that too)
Sugar, red meat, and bread cause terrible inflammation which makes everything hurt (all my favorites stuff)
As you can see I haven't got it all figured out as I still haven't been able to completely stop what I know is going to cause me pain.. but, I have learned to moderate what I do for the most part. When I first get home from being gone for months I want to see family and friends. I want to share a meal with people. I want to be social. And I pay for the pleasure every time. I've learned to take the good and expect the bad if I do. In other words I am living my life on my own terms as much as I possible can.
I have to admit I still have and may always have problems but, I will not allow my life to be dictated to me by a damn "syndrome". I think often of what might happen if I get sick or a cold or something that could set me back. I have decided that I also will not live in fear of what might or might not happen.
We get to make choices, even if they are limited. We still get to choose how we will handle our life. It is so much less stressful to choose to be strong, to fight back, to get mad even. It's empowering and it makes me happy to know it's my choice. I hope for all of you it will be your choice also.
Happy Trails as they say in my life!
Sandishus