Better by the day
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January 8, 2007 at 11:58 pm
On October 12th I noticed a tingling in my hands as I took my morning shower. I thought nothing of it until I noticed it was in both hands. I continued and went to work and on the way I noticed my feet tingling like they were asleep. I knew something was not right so I called my wife and let her know and then I went on to work. I worked all day and felt my left calf getting weak by the end of the workday. We went out to eat and I noticed my hands were not working like they should (cutting meat/lifting drink glass…). I went to work the next morning thinking it might be better but it wasn’t. I called my Dr. and got an appointment at 10 am , he really didn’t know for sure but said this may last for awhile and to go home and see if it got worse. He made me an appointment with a neurologist. I came home and took a nap on the couch and my wife took one in the bed, my daughter called and asked what the doctor said and wanted to know the name of the neurologist and as I tried to get up from the couch I could barely move. I finally got up and walked to the light switch and couldn’t raise my arms to turn the light on. We headed to the emergency room and from there numerous tests including MRI’S CT’S and about 1000 blood tests…… but anyway by 4am and the 3rd MRI I lost all memory. Over the next 3 weeks in CCU with 13 days on the ventilator and 104.5 fever for 1 week, they said my body was septic, I started to take a turn for the better. 1 week later I transfered to a rehab hospital and started working like my life depended on it. 4 weeks later I walked out on my own. I still go to therapy 3 times a week but it’s outpatient. I haven’t used a walker in 3 weeks and am showering without a seat. I’m remembering some hallucinations from the CCU but not much else , and my wife says thats probablly a good thing. I know this is kinda a lengthy story but if it can give anyone some hope that will be great. My hands are almost to 100% and the tingling in my feet seems to be getting better daily. I am doing alot of weight training,endurance training and balance therapy. I’m walking everywhere with leg weights on.I got my truck back last week and that helped my mental therapy alot. If anyone would like to talk or discuss anything feel free to contact me.:)
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January 9, 2007 at 12:13 am
Hi Thray, Welcome to The Family. That is a neat story, congrats on your rapid recovery. Its refreshing to hear a positive story like yours. Keep up the good work and remember not to over do things. Take care.:)
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January 9, 2007 at 12:15 pm
Thanks Cheryl, I’m remembering to take it easy and not over do it. Thats one of the things I read about while in the hospital. I did want to add I had extensive drug therapy to help recover this fast. As a matter of fact the CCU bill was $347,000.00 and the Meds cost $187,000.00 and I haven’t even gotten any bills from the rehab hospital yet. But oh well can I put a price on my life? YES I CAN , because having every minuite with my family and grandsons is PRICELESS!
Tim “grateful to be alive” -
January 9, 2007 at 3:23 pm
That is a wonderful attitude you have. i haven’t seen too many bills on my hospital stays yet, i’m sure they are going through the roof also. i have chronic gbs relapsing/remitting type, and have been in the hospital 5 times and have had 6 stay at home relapses.
keep up the great positive attitude-it is infectious around here!!!:) Take care. -
January 9, 2007 at 6:22 pm
Thray,
You have remarkably improved compared to mine. Mine peaked on the week of Oct 10th. You seem to have had a rough time in the hospital but your recovery was swift. You skipped a lot of the long waiting for the nerves to heal. WHen You say you walked out of the hospital, were your feet still numb? WHat time of rehab do you do for your balance? I m just trying to understand this crazy syndrome. -
January 9, 2007 at 10:30 pm
Thray,
Welcome to the forum. It’s wonderful to hear that you are doing so well 😀 . It helps having a loving partner with you to help you through everything. Please remember that you shouldnt push yourself toooooo much at this point, and please dont get frustrated, but I’m sure you know, you are still in recovery. Your positive attitude goes a long way in helping your recovery. Please keep us updated on your progress!
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January 10, 2007 at 2:03 am
Thray ~ welcome to the “Family” and to your wife, also! Thanks for sharing your story.
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January 10, 2007 at 12:31 pm
The month of October hit a lot of people. That is when my daughter (4 years old) was diagnosised. I wish to say that she is doing as great as you. She was hospitalized for 3 weeks, 2 in the rehab unit of the children’s hospital. She has returned home, and she conducts her life as if it is normal, going to school, playing with friends, preparing to go to DisneyWorld. She still walks with a walker, and has had very little improvement in her left leg. Thank yo ufor the insight that you provided. It helps me understand what she went through
Mary -
January 11, 2007 at 9:20 am
I’m doing heel to toe inbetween the bars and I’v found if I focus on a spot it gets easier. And about my feet being numb when I walked out of the hospital yes they were and still are to some degree but getting better. I don’t know if this would help anyone but my neurologist put me on 2 suppliments. Acetyl-L-Carnitine and AllBee with C , they are supposed to help with nerve regeneration and energy and somewhat of a vitamine defeciancy. The Acetyl-L-Carnintine is 500mg 1 twice daily and the other is take as directed on the bottle. I’ve read alot about both and they seem to have other benifits also.
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January 11, 2007 at 9:24 am
Oh yes did I mention my feet are still numb? My fingers are too but they are getting almost to normal again. My calves are numb to the touch but the muscle inside gets reall tired. My hands and feet are going through a itching phase and I’m hoping thats great news from the healing process.
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January 17, 2007 at 5:46 pm
Hi Thray – so glad you are doing so well. I, too, have the itching. I noticed it right after my first IVIG and it was all over my body. After the second IVIG it is confined to just the palms of both hands! Crazy, huh? October was my defining month as well. I’m curious – did anyone have any trauma in the months before onset? I hurt my back, began chiropractic adjustments, and almost immediately began getting weak and falling. Then, fell and broke my ankle which really sent me into symptoms and ultimately IVIG. Since the doctors don’t know exactly what causes CIDP, could this be something that hasn’t been investigated? Keep up the good work, Thray. Good luck and best of health!
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January 17, 2007 at 7:44 pm
Thray, welcome to the family. So glad to hear that you are on the road to recovery. Patience can be overrated but is very necessary with this disease. Take care and remember to rest when you need to.
Jerimy
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January 18, 2007 at 1:21 pm
Greetings Tim,
Glad to have you with us! And that you are doing very well… considering. Occasionally, I get itching in my hands and ankles. That is usually a sign that I need to slow down. Also, I think the amitryptiline I am on helps some too. But when I get to itching, I fear it will bring on hives – at least that is how it feels. It is that underground itching. I’m sure many of us can relate.
Hang in there and don’t forget to get lots and lots of rest 🙂
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January 18, 2007 at 8:21 pm
Thray, that’s a wonderful account of your gbs recovery. Glad you are doing well. My legs itch, thought it was dryness from chlorine in the pool where I swim 3x wk. Who knows. Still need assistance to walk, have tingling in legs and hands. Can’t complain, get a little impatient sometimes. Was dx5/05.
Peggy
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January 20, 2007 at 2:09 pm
🙂 All I can do is keep hoping the recovery keeps pace. My heel to toe has come back it seems better than pre GBS. My PT has been stepping my therapy up it seems like every day. Now I am on the treadmill for 30 min with 5# weights on each ankle and then backwards for 15 min. , then I get on the stationary bike for 15 min at level 5, still with the weights on. I’m able to walk on the wood floor barefooted now. My calves still take awhile to turn loose in the mornings and after sitting for any extended time. The itching is getting better but still is there. I’m trying to wear the ankle weights at all times but in the evenings I take them off sometimes just for a treat . All in all I feel very fortunate to have a recovery that is going so well from what I have heard and read. I just want everyone to keep a faith and hope and NEVER GIVE UP. My doctors say I’m a miracle. I will live as if I am every minuite. I will get some news on the weird protein they found in my blood during the testing on February the 8th. 🙂 (keeping fingers crossed). If I can help anyone just let me know.
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January 27, 2007 at 11:35 am
Well everyone was telling me but I wasn’t hearing. I guess I overdid my exercises and now I’ve been set back. I had been stepping the pace up everyday. Yesterday I got up VERY slowly out of bed because I could barely walk. The tingling and pins/needles are back. My shoulders are very sore and my back hurts . My calves are hurting too. It was very depressing. I actually couldn’t help but crying. I’m getting over it, but to be doing so well and then set back so far just got to me. I have read alot but as usual thought “I’m different” and I’ll get this over and done with in record time. It’s going to be tough holding back when I feel like I can do more.
What I need to know is how to tell when you need to stop, before overdoing it.
I also would like any tips on dissability . They told me 5 months before even considering and then I have to see their doctor. Then it could be 60/90 days. I filled out a huge stack of papers a couple of days ago and called them but no luck. Is someone supposed to have 6 months of wages stuck away to just get through? I’m still doing ok with the bills but I know alot of people could loose everything they had in that 6 months of lost wages.
Also the person I talked to at the Social Unsecurity Office had never even heard of GBS. Geeeezzzz I feel like I’m going to have a battle.
Well I hope it dosen’t sound like I’m whinning. I just needed to vent to someone that would possibly know about what is going on.
THANKS
Tim Ray
Little Rock, Arkansas
GBS 10/11/2006
4 weeks in CCU
13 days on vent
2 1/2 weeks hallucinating
LUCKY TO BE ALIVE!!! -
January 27, 2007 at 12:20 pm
Hi Tim!
My fiancee Ben had an almost identical case to yours two years ago at age 37. The following are his words to you:
It’s rough being told to limit what you can do when your mind wants to do everything it did before. There has to be some compromise between the mind and the body. After a few more times of going all out like before, the body, in it’s own way, will let you know that there will be a period of some down time. It’s hard to accept, but it’s the adjustment we have to make because of our illness. It’s about finding balance with the illness, and the only way to know that is through trial and error. It isn’t fun, and at times you can get very angry about it and say it’s not fair because we didn’t choose to get GBS. It’s out of our hands, just like so many other things in life that come and go. The one thing we can do is make peace of the situation that has affected our lives, and with that only time will make our character stronger. I’m coming up to my two year “anniversary” with GBS, and it has been a roller coaster of a ride. I’ll spare you all the details, but, little by little, I’m learning to make peace with my GBS. I’m so grateful when I wake up to a new day, whether I’m feeling good or feeling bad, that my outlook in life is not taken for granted.
If you’d like to contact Ben, his e-mail address is [email]cozody67@sbcglobal.net[/email].
Shannon (and Ben)
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February 3, 2007 at 4:47 pm
My follow up has moved to the “setback” thread .
Thanks to everyone for support and advice.
Tim Ray
Little Rock, Arkansas U.S.A.
SEVERE GBS 10/11/2006
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