Fantom leg–Newbie :~)

    • Anonymous
      January 24, 2008 at 6:25 pm

      GBS – Female
      Date started: 24 Sept 2006
      Date diagnosed: 26 Sept 2006
      Live in: Southern Alabama
      Cause: unknown

      After driving from California to Alabama I was stressed out and feel that this made me weakened physicaly and I noticed about four weeks later that I was having double vision problems and began dropping a few things but dismissed it for clumsiness. On the 24th Sept 2006 my fingers and up my right arm went numb. Worried I might be having a stroke we went to the ER. They released me with Rx for hypertention and pain pills. Went home and I had problem when getting out of the truck I took a few steps and fell. My fiance helped me up and I tried again but couldn’t make it up the three steps. He couldn’t lift me up so he got a blanket and had to drag me inside and somehow he got me up on the bed. After resting for awhile I was able to go to the bathroom by myself but later had some difficulty walking but was able to look up on my computer my symptoms but with so many things it could be I tried to get some rest. I had to sleep sitting up as my breathing was labored. The next morning 25 Sep 2006 came early and I had problem with severe constipation. I had tried to eat but nothing would stay down. After trying all remadies I knew I would have to go back to the ER. Later that evening my fiance called a cousin to come over to help and they carried me and put me into the truck and off back to the ER we went. At this point I was losing feeling in my back, legs,arms. Admitted to the hospital abt 2 a.m. and was diagnosed abt. 9 a.m. on the 26 Sep 2006 and was intebated about 1 p.m. On abt. 27 Sep 2006 I was given IVIG with another round of IVIG abt. 5 weeks later. I was given a trac and belly feeding tube. I delt with fantom leg, ice picks and frozen metal wrapping around my affected limbs for months. There also was horrible nightmares that I swore was reality. I had to spend about eight weeks in MICU then about two weeks in a hospital room then was sent to one of two nursing homes I have been in over the last 13 months. I had to spend a week in another hospital when I had a blood clot on my right lung. I finnaly got home 20 Dec 2007. If it wasn’t for PT at the last nursing home (they was wonderful). I wouldn’t be doing as well but I am in a wheelchair and can use my walker (I am up to 140 feet now) I have numbness and vibrations in hands and feet and have drop foot in both feet. My right eye has been giving me problems with the muscles around it and a little bluring. My right side of my mouth doesn’t smile as much as other side too. The doctors (I had quite a few) say that I had a severe case of GBS and that my rehab is fair. I get depressed but thank God I have the ability to look at things from two sides. I try to remind myself now of how it was little steps by little steps that got me to this spot and I am truly grateful. Little things we don’t think about any other time now means a great deal like being able to pick up a fork or blow your own nose or scratch an itch. Sure you need help on the big things like walking or sitting but never did I dream I would need
      help to roll over in bed, take my hand out from under the sheet (sheet was too heavy) or need help closing my eye lid. Having someone listen to me and be happy for each tiny movement, made each day hopefull. The CNAs at the last nursing home was very encouraging from the start. Back then (sounds like years ago and not just months but anyways…) back then I came to them not able to get out of bed or sit up without help and they had to prop me up. I remember the therapist coming in to evaluate me. I was very nervous but he sat there talking and working with me very slowly (he even sat down on the floor) and we tried to see if I could slide on a slide board to the wheel chair. Imposible ! I moved about what I thought 1/2 inch. Prob. was more like zip as I think I just wabbled. LOL But with their help each day I exercised and rested and now I am stronger and can use my walker to transfer to the wheel chair. I am taking coumadin 7mg, lotab 7.5mg, htcz 12.5mg, multi
      vitamin, zinc, and echinacea each day. They say that two people in 100,000 get GBS ….. well in MICU there was another lady that came in with GBS while I was there. We have since met long after our guys had already met in the waiting room. In talking together we (the four of us) have found alot of
      simularities in our GBS. The guys, our caregivers, have had thier rough time of this also and it has taken a toll out on them with worry. I don’t know what I ever would of done with out him. Patience and rest and not getting overly tired sounds easy but it helps. Getting excited about finaly being home gave me an excuse to forget about therapy and I know now I have to continue my
      exercises even if I don’t have the therapist to tell me what to do. (I faithfully went to therapy while in the nursing home) One of the things that made me very upset in the hospital and nursing homes was the lack of “soft” call buttons (ones that you don’t have to use fingers to push. You use a shoulder or your head.) I begged (via letterboard) for them to get me one while I was in MICU. All I could do to get thier attention was to clack my tongue. I never did get one until I was begining to use my hands and by then I had my voice back. I found out later they only had two in the whole hospital. Lack of awareness about GBS is understandable with it being so “rare”…. but I am hearing many more coming to say they know someone or thier relative or friend had it. Maybe it isn’t that it is so rare but that it gets misdiagnosed or is treated as an “out patient” or not treated and not reported as such. (my thought) Many have asked me if I was in a car accident or did I have a stroke. Ok I will get off the soap box. I sometimes get too wordy. LOL this has taken me three days to type out because my hands go tired and numb. Oh that reminds me… hands numb and over sensative… feeling smooth material is like rough sandpaper. Having some problem with memory and have problem with things like spelling.

      Hugs to you all. Share a Smile ! :~)

      Curious about the simularities in GBS patients.

    • Anonymous
      January 24, 2008 at 7:37 pm

      Welcome to the family! You have quite a story 😮 I am glad that you are able to be home now and that you “found us” here. I believe that you will find lots of support for your journey as you get to know the others here. When you have a question, someone will eventually be around with some insight. Again, welcome.

    • Anonymous
      January 24, 2008 at 10:01 pm

      Welcome and I am glad you shared your story it is very very similar to my own. Now I look back and laugh at some of the things I did in rehab and how afraid I was one minute and the next I was laughing at myself. I remember the feeling of a huge cable around the front of my ankle and I remember the sheets holding me down. I remember how I would click to get their attention in the ICU. You are the only one besides myself that I have read about that did that. It was a major step to have the soft call button. To move up to the next level and actually push the button to call the nurse or aid. Finally to be able to change the channel on the tv. I had a bunch of favorite shows on several channels and the staff actually learned my routine. They would come in like clock work to change my channels so I did not miss my favorites. I don’t think they know or maybe they do how much little things like that made my day go faster, gave me a routine I could look forward to having someone visit. Also, I tired to be patient because I knew they would be in my room in 5 minutes to change the channel. It is funny the things we all can remember when we read someones elses story and yours could have been my story! Glad you found this forum. I am also glad you are at home. Keep up the exercises to keep working on ranges of motion, balance and breathing. Those strenghts tend to decrease quickly if you don’t work on them and remember listen to your body so you don’t take a few steps backwards in your recovery! Nice to meet you!

    • Anonymous
      January 25, 2008 at 7:23 am

      Hello CKLee,

      I too had to use the “click” to get attention from the nurses. Nothing else would work and the call button was impossible to use. This was in 1986 and I can see now that nothing has changed very much since then. Good luck with your recovery.


    • Anonymous
      January 25, 2008 at 11:56 am

      AHHH ! Taking a refreshing breath as I read your post. Someone ATLAST understands what I am talking about. My caregiver, my fiance, trys to understand and he does on most things very well but there are things that you just have to experiance first hand to realy understand. I read in one post about the “bumping the bed” and I remembered how that felt like rocking the boat. As far as pushing the TV remote, I didn’t have the musle to push anything with my fingers and didn’t get the execise needed (back then it was OT once a week) and now my hands show muscle atrophy and my fingers are displaced (leaning to one side). My pinky finger curls in esp. when I get tired and only two fingers seem to be “normal” as the other eight curve. It took a while before I could pick up anything heavier than a nail file of which I couldn’t use as the vibration set me into deeper numbness and feelings as though I had electric shock. I still have that vibration feeling but not near as much as I did. One good thing I have noticed is nail growth. I never had nice nails before but wow they are nice and strong and long now. CNAs envied me. LOL Wondering about does all GBS people have the “prickly heat” rash? I call it that cause the rash is tiny spots on the effected areas and it seems to go away as the feelings come back and the all over redness goes away. I have had a rash on my back for a year now but that one the doctor says is ringworm. The nursing homes I was in didn’t put the cream on me for the times it was ordered and now that I am home it seems to be going away. But they gave me paperwork off the net that said if cream not applied correctly it might not ever go away. So I am hoping this time it will go away. What is you thoughts on AFOs?

      Share a SMILE !

    • Anonymous
      January 25, 2008 at 12:43 pm

      Just found yesterday that my employer wants me to go on disability. (yes, I am still working or at least trying to).
      When my wife heard this she blew gasket…at me!
      I get the distinct feeling she thinks I am making the whole thing up!
      She can see my hands and feet and to her they “LOOK” normal.
      She would have to be inside my body to know just what I’m feeling.
      For 4-5 weeks after I got out of the hospital I was improving, and now it’s coming back. My hands and feet feel like to lumps.
      When I went into the hospital I could not walk.
      Maybe I need another IV treatment???
      I am 66 years old and have never been sick a day in my life except for colds.
      I guess too, that with me it’s the old “Male Ego” thing.
      I need help buttoning my shirts and pants; so I think it’s bothering me in that way as well.
      My wife says I’m having a self pity party!:confused:

      Thanks for letting me vent!


    • Anonymous
      January 25, 2008 at 1:35 pm

      So have a pity party ! Many GBSers would come LOL Sorry to hear she isn’t that understanding. Or maybe she is just scared and doesn’t know how to process this new thing. I don’t think you need another IVig but that is something you need to ask your doctor but the stress isn’t good for you. Has your wife read any of this GBS site? Might do her some good to air her feelings. I have a difficult time with buttons and zippers and sometimes sitting watching TV I think all is fine then I reach for the remote and all comes back to reality…can’t reach it without moving the wheel chair. What a wake up !

      Venting is part of stress relief !

    • Anonymous
      January 25, 2008 at 3:28 pm

      Hi CK, Welcome to The Family! I know what you mean about the call buttons. I have had to ask for the soft touch buttons with every hospital stay for the last 2plus years. One hospital didn’t bring it in at all, even with my husband asking for it 4 times. What a nightmare that hospital leaves me with. I couldn’t get a nurse if I needed one because I was at the end of the hallway-all by myself for 24 hours. Family support is the most important thing to gbs/cidp patients. Feel free to ask any question or vent when you need to-we understand what you are feeling or not feeling;)

      Don, Big Hugs to You! I’m sure your other half will come around in time, mine did. still dealing with the otherside of the family-but hey, I’m not waiting or worrying about them. Have you actually shared your inner feelings with her? if not you might want to try it, it might help her grasp reality of the situation alittle easier and more firmly. This invisible disability is really hard for others to understand. Have her sit down with you and actually read some of the posts on here. What others need to know thread is a good place to start, it helps to hear it from others who are in a similar situation. Caregivers threads are good also. If she wants she can post any questions she has also.

      Take care and Good Health!

    • Anonymous
      January 25, 2008 at 8:05 pm

      I agree with the others that no one realizes how we struggle with all the daily changing things our bodies are going thru. As far as our care givers there is a booklet that is available thru the GBS/CIDP Foundation that is Free. I would have a copy of it set to her so she can read up on what others have gone thru. It is hard when we do start to recover and are able to do things for ourselves that look normal. But it only shows that you can function with numb fingers and feet you just have to watch what you are doing to do those things. You have to learn to ignore pain or the electric shock or zings and zaps that are hot enough to make you want to drop things but you know better and hold on to them … a cup of coffee or a bowl of soup. We all have found it very hard to even explain at times what our bodies are feeling. It is not being tired, or exhausted it is fatigue that does not go away with a power nap or a single nights sleep. We have to have patience with our caregivers too because this is going to be a very hard process what will now be expected from them to fill in around the house what we used to be able to do. Keep the communications open and don’t dwell on the big feelings but also celebrate the good days. Keep a Journal will show even slow progress over a months time or over a year. Have patience with each other.

    • Anonymous
      January 29, 2008 at 5:10 pm

      Oh boy have i been there when someone tells you it’s just a pity party..I would love for them to spend one day in our bodies. Make sure she reads absolutely everything about GBS and also from the caregivers point of view..and maybe she is scared because she has never seen you sick before and she doesn’t know how to deal with it..that’s how my daughter responded.
      she was so scared and couldn’t stand to see me in a wheelchair so she basically kept trying to act like i was fine. after four years she is finally pretty good with it but she still doesnn’t understand the residuals and such..she still gets upset if i am extremely tired and in bed for a long time. but i have learned to let her deal with it her own way because i don’t have the strength to explain anymore. she is 21 and a adult so she will survivel.


    • Anonymous
      February 21, 2010 at 3:02 am

      Just wanted to give an update. I am still using a wheelchair and walker. Not steady enough yet and doc says I am a fall risk. My feet and hands are still effected and still very sensitive. I am soon turning 60 yrs. old and some problems in my body can be old age or arthritis but I know how my body was prior to GBS and my body sure has changed in a short time period. As I mentioned in my other post, my fingers are drifting and atrophied and cold seems to make them hurt more. I still have drop foot and if I concentrate real hard I might get a slight movement in my big toe once or twice but then it just quits. My big toe drops further down than my feet and acts like there is no bone. My face on right has stopped twitching and m[COLOR=”Black”]y eyelid now shuts without problem now. Eye was feeling like it was being tigh[/COLOR]tened slightly but doc gave me some muscle relaxers and they have helped a lot. I still have, and probably will the rest of my life, high blood pressure so I am being treated for that as well. I am now taking the following Rx: tizanidine, potasium chloride, lortab, furosemide, singular, amlodipine, and a few misc. vitamin pills. I have been out of the nursing home now for two years two months lol two days. I am in process of moving out of state and very nervous as I have always been able to pack and drive myself anywhere I needed but now I have to ask for help doing even the simple things. I won’t be driving, I don’t trust myself, so I will be flying. But that poses a new string of problems. How ? ok I finally could get myself a power chair and Yes they do allow on a plane without charge TY.
      I won’t bore you with details but it does sound like my fears was the same as others before me so the airlines have listened and I shouldn’t have any reason to fear. I will write again after I get to my new destination. Of which I have chosen to put myself into an assisted living / nursing home but this time closer to my grandchildren. [COLOR=”Red”]Has anyone flew since having GBS ??? How did it feel as far as the vibrations ??? [/COLOR]I still have vibration problems riding in cars.

      Over all I am just so thankful for so much, most of the things we normally take for granite, those little things we don’t think about until you can’t.
      My fingers and I are tired so I will post after I get moved. Good Luck everyone and you all are in my prayers. 🙂

    • Anonymous
      February 21, 2010 at 4:33 pm

      I don’t travel any more for the same reason you have. But I don’t have the powder chair. I felt the stress and walking needed even if I did have them meet me at both ends of the trip with an assistant and a wheel chair that I would be exhausted. I think that was my bigest fear! I am 4 years and 3 months since my onset and I am getting stronger! The vibrating has not been as bad and the tingling is getting better slowly. Each of us have healed at different paces and to various degrees! Just listen to your body! Enjoy the ride because you have the access to a power chair. Have the airport meet you with an assistant might be a way to go to get you to the gate and then to get you off the plane and to the luggage area. How about if you ship your belongings, would that make check in easier? I hope you plan on having family meet you at the airport too! I know alot of people from this area that travel and go to the GBS meetins and symposiums! I had all the symptoms that you had but they have lessened in intensitivity. I still have some areas that are not as strong like my back and hips and wrists and ankles but they are still chaning and getting stronger after all this time. Just in the last year I have had some good progress! I am able to stabilize my wrists to bring things down off of shelves and put them back up and not fear for my life! If they do wobble I can get them undercontrol but not get a box on my head. I can cook more and control the pots and pans since my wrists are stronger. That is a big thing to get back for me! Even being able to wash the dishes and not have my wrists turn backwards with the pots and pans or dishes has made cooking a pleasure again.

      Work thru your fears and enjoy your new “normal” which just takes a little more planning! Sounds like you have made some major decisions that will make your life enjoyable for you and your family being closer!