whats new with me

    • Anonymous
      November 8, 2007 at 1:47 pm

      Hello every one
      Sonja here wanting you to know whats happening with me. I am in the hospital. I can not move my hands or legs. Doctors say it is not gbs, but it will take a while for it to go away. So I have to go to a nursing hoe till it gets better. My nerves are fine but my muscles are not working at all and i can not feel anything.

      I wish you all the best in all your guys life. Praying for you.

      Sincerly
      Sonja Fjeldstrom

whats new with me

    • Anonymous
      November 8, 2007 at 1:47 pm

      Hello every one
      Sonja here wanting you to know whats happening with me. I am in the hospital. I can not move my hands or legs. Doctors say it is not gbs, but it will take a while for it to go away. So I have to go to a nursing hoe till it gets better. My nerves are fine but my muscles are not working at all and i can not feel anything.

      I wish you all the best in all your guys life. Praying for you.

    • Anonymous
      November 8, 2007 at 1:57 pm

      Sonja,

      I wish I was closer so I could be with you. What do the doctors think you have if not GBS? Have they run any tests? IVIG?
      Remember we are here to support each other. Keep us posted as to what is happening.

      Rhonda

    • Anonymous
      November 8, 2007 at 8:12 pm

      It is not gbs and it is not serious and it will go away after a while.The nerve conduction study showed that my nerves were fine but my muscles were not responding. Idid not have IVIG because they said it is not GBS and the test showed normal. Now it is a waiting game to get into long term care until I recover.

      Sincerly
      Sonja

    • November 8, 2007 at 9:35 pm

      What do they suspect? Maybe not enough damage has occurred to show up on the ncv/emg. Did they do a spinal? There is something wrong if you need to go to a nursing home for rehab. Persist and don’t let them pacify you, it is your life, press for an answer.

      How do you present, where is your weakness? How long has it gone on for? Has it worsened?

      If it is your muscles, do they suspect ms?

      Good luck to you, I will be thinking of you!
      Dawn Kevies mom

    • Anonymous
      November 8, 2007 at 10:09 pm

      sonja,

      ditto dawn. if the emg/ncv shows it is the muscles & not the nerves, then why is it you can’t feel anything? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 9, 2007 at 12:14 pm

      Hi Sonja, Have your B levels been monitored along with your potassium levels? Just wondering if you might have Periodic Paralysis. I’m worried about you Hun! Please Keep in Touch. Big Hugs!!

    • Anonymous
      November 9, 2007 at 5:33 pm

      I had a MRI and a nerve conduction study. Which they said showed normal. The doctors said what I have is something that is not serious but has a very long name. I also had a CAT scan when I first tried to get help but they sent me home. This came on when I was having a shower and noticed that I could not feel hot or cold further up my legs that was about the13 of october. That night I decided to get checked out as I had a feeling something was wrong. While in the waiting room my hands went tingly and were starting to go numb. and my legs were more affected. When Ifinally saw the doctor he said he did not think it was neurological because of the loss of sensation. and gave me a CAT scan and sent me home. I knew I was neurological and tried getting in to see my neurologist but she said she did not think it was urgent and said I could wait till december till I needed to see her. My friends were flabergasted that no one was doing anything told me to go to the U of A hospital. I only had to wait approx. 1 hourbefore getting in andthey admitted me. But thwhat I have told you all is as much as has been done.

      Hope you all are doing well, keep your spirits up, I am doing as much as I can and God is withme and giving me hope each day so I give you the same.

      Sincerly
      Sonja

    • Anonymous
      November 9, 2007 at 9:56 pm

      I am glad to hear you have hope in your heart. If you can be at peace in your situation, it does wonders. I am also glad that the drs. say it is not serious. Stay strong — Sending my wishes for your complete recovery!

    • Anonymous
      November 14, 2007 at 1:15 pm

      I signed the papers for the nursing home and soon I will have to pay for rent here at the hospital. 41.50 dollars a day. Which is the same price as a ward rate in a nursing home. No new news but just trying to stay opptomistic and strong through this all.

      Wishing you all the best in your lives and recovery.
      Sincerly,
      Sonja

    • Anonymous
      November 14, 2007 at 1:52 pm

      [QUOTE]the doctor he said he did not think it was neurological because of the loss of sensation[/QUOTE]

      I don’t understand… my doc says I have sensory pherip. neuropathy. And I have loss of sensation all the time in my feet and hands/arms.

      Maybe I’m missing something in your post? I hope whatever happens you will recover quickly. Hey, $41.50 per day is very cheap in the US – I think on my insurance I have to pay $150 a day.

      Keep us updated!

    • Anonymous
      November 14, 2007 at 8:16 pm

      All I know is the doctors said they don’t think it iss GBS because the nerves showed normal. So they said that what I have is eventually going to go away and the name is too long for me to really need to know. I will try to ask my nurse for the name mabye I will get more info out that way as the doctor doesn’t seem to want to tell me what. I will post it when I find out.

      Take care.

      Sincerly,
      Sonja

    • Anonymous
      November 20, 2007 at 1:30 pm

      I still have not got the name of what I have as life here at the hospital has been too hectic. but am still planning to get the diagnosis. Right now I am trying to arrange getting my belongingings out of the group home by the end of the month. This task is taking a lot of time. I am also having to have certain tests done to go to the nursing home. I had to have a chest X-RAY yesterday because they required it. I also had to go on potassium yesterday because my levels are low.

      Thats all I can report so wishing you all the best. Take care and thinking of all of you.

      Sincerly,
      Sonja

    • Anonymous
      November 24, 2007 at 2:48 pm

      I am now finally on the waiting list for the nursing home officially. CAPS finally came up to see me. They are the ones that assess your needs and then place you in a suitable placement. The lady said because I am already on the system it is easier because all they have to do is update my file. I also don’t have to worry about my stuff from the group home as the out-patient social worker picked it all up and is storing it in her office. My dad is coming up from Calgary to get my stuff and then it will be all there. I’ve just been put on potassium because my levels are low. I don’t know why they are low but they are. Other then that I am staying optamistic and hopeful.

      Wishing you all the best and prayers go out to you all. May your days be full of peace and happiness.

      Sincerly,
      Sonja

    • Anonymous
      November 24, 2007 at 8:42 pm

      Sonja you are a blessing to everyone with your faith and postive outlook. I feel as long as we have faith and try and keep our eyes open we will become better. We have been put through this for a reason and in time we will see the reason. I have become very humble and see people different without anger or pain. I find I pray every day for those suffering here and others. If we look hard we will see we all have been blessed in many ways. We give love and prayer and understand to others not wanting anything back from them but only for them to heal.Many with out faith have found a faith that brings them hope and strength. Looking at this year getting GBS in Nov and walking in March and then haveing a triple bi-pass in Aug and now in Nov I am feeling good and have met and part of beautiful people from all over the world. One thing I do and will cont to do till I cross over is give back to others that still suffer. I remember something a loveing friend said to me YOU ARE A CHILD OF GODS AND GOD DON’T MAKE NO JUNK.Sonja may Gods blessings flow in you and his healing powers touch you. in your own way you are and angel Your unconditional friend (Steve)

    • Anonymous
      November 26, 2007 at 4:19 pm

      I usually say when life gives you lemons make lemonade. Another thing that keeps me going is that God will only give you as much as you can handle and nothing more. In that way I can look at the positive and see that gGod obviously trusts me with a lot because not just anybody could have gone through as much as I have. I consider it is a testiment to all of us here on this forum as well. We obviously have the ability to deal with more than most people and should feel blessed. I wake up each day with a strength and happiness that I know can only come from God as by myself I could not do it. Other patients here at the hospital say I am an inspiration to them. I don’t know about that but I do know that a positive attitude goes a long way. I celebrated my 4th birthday in AA yesterday and had my first pass in 5 weeks. I think that mabye the fact that I go to AA might be why I am able to tolerate things as well as I am. Things are going slowly around here but that is life at a hospital.

      Wishing you all the best in all your lives and recovery.

      Sincerly,
      Sonja

    • Anonymous
      November 27, 2007 at 5:42 pm

      Surprise, surprise, I supposedly have something called Somatization/ Conversion Disorder. Now I am looney. How Wonderful. I did not wish this to happen and now look at what they think. Well let them think what they want Idon’t believe it for one second, there is just too many missing pieces.

      Take care every one
      Sincerly,
      Sonja

    • Anonymous
      November 28, 2007 at 12:02 am

      Sonja, Join Our Happy Go Nuts Club!:D You know its Not In Your Mind! I had that dx also, until I faced the drs head on and told them they %$#@ up and I am really close to proving that to them and I will make sure they learn from their past mistakes as well. You need to find a new, well educated dr, experienced in gbs cidp and you will get a true dx. Stick to your guns Sonja. Keep your Great Attitude!!:) Take Care!

    • November 28, 2007 at 12:35 pm

      [FONT=”Arial Black”][SIZE=”6″][/SIZE][/FONT]

      SONJA GO SOMEWHERE ELSE KEVIN HAD THE SAME DIAGNOSIS THE FIRST TIME, A MUSCULAR DYSTROPHY THE SECOND AND A PROPER DIAGNOSIS THE THIRD TIME. HOW MUCH VALUABLE TIME WE WASTED. IT IS NOT IN YOUR HEAD. HAVE YOU HAD A SPINAL, HAVE THEY REPEATED THE NCV/EMG?

      GO SOMEWHERE ELSE, THEY ARE WRONG. YOU CANNOT AFFORD TO WASTE TIME, CALL THE FOUNDATION FOR HELP!

      DAWN KEVIES MOM

    • Anonymous
      November 28, 2007 at 5:58 pm

      I think the dx is bogus too because I looked it up and I have had no stressful event to have brought it on. I know it is not in my head. They did not do a spinal or repeat a nerve conduction study. It is like when it came back normal the first time they just chaulked it up to being nothing. I still have no idea the true dx. They just think because I have had past mental health problems this is another one. I hate being labeled this way when there is no need for it.

      I don’t have the number for the foundation to even call it.

      Take care every one.

      Sonja

    • Anonymous
      November 29, 2007 at 11:45 am

      Sonja, email addy for gbsfi is: [EMAIL=”info@gbs-cidp.org”]info@gbs-cidp.org[/EMAIL], ask them whatever and whereever you need info for.:) or just hit forum word at the top lefthand corner of this page and it will take you to the front forum page and highlight the same email.

    • Anonymous
      November 29, 2007 at 12:04 pm

      Sonja you need to get your Dad or another family member to be your advocate also. Have them demand that a Lumbar or Spinal Tap is done to rule out GBS. That is the only way they can possitively identify it is what it is and that is why everyone keeps asking if you had that test done. All those other tests will rule out other diseases. Keep up that great attitude! I am like the others some of what they are telling you goes in a different direction from what I was told. Muscles don’t tingle and go numb that is nerves. Digging deeper will get more results on this treasure hunt!

    • Anonymous
      November 30, 2007 at 3:09 pm

      Yesterday I broke down and had a little bit of a tear eposode. See I smoke and there was a patient in the bed next mine who had visitors and every time I entered the room they would quite loudly announce that it stunk and that the nurses should not allow people to smoke especially when there are sick people on oxegen. Of course the guy in the bed next to me was delirious and was not conscious most of the time and the last straw was when the nurses told me I could not even roll my smokes in my own room because the other patients were complaining about the smell. That was crap as no one in the room is capable of communicating period. I was upset as here I am unable to do half the things I used to be able to do and now I am being told I can’t do more and more things. They have already imposed a time limit on when I have to be back to go to bed which is at ten o’clock. I am 26 and I have to go to bed at 10. Once I am in bed I can’t get out till the nurses get me out as I have to be medi-lifted in and out of bed. More and more of my freedom is gone as I go along. Last night I was so upset it took me an hour and a half to calm down and even then I was still on the verge of tears. I guess that is what stress does when you bottle it up. Being in this hospital is stressing me out big time, I don’t have my normal coping mechanisms to use which have been painting or playing the piano. I miss being in the group home and having my freedom to come and go as I wished and to go to bed at a later time and to be able to smoke later. My sleeping pills are not working and I am not getting the sleep I need that could be contributing to this as well because the psychiatrists are fooling around with my medication and that could account for it as well.

      As for having family advocate for me that is probably not going to happen as they live in Calgary and I live in Edmonton. I’ll be lucky if I see them any time soon. I plan on confronting the psychiatrist about the diagnosis as it is technically a psychiatric diagnosis and I will get to the bottom of it that way and hopefully I can get them to stop fooling around with my meds as I am definatly feeling the effects as my mood even today is not the greatest.

      Hope everyone is doing OK. I know I’ll get out of this slump and be fine but I also know I need to let it out as well for my well being as if I don’t it will just pile up again and I can’t go through that again.

      Sonja

    • Anonymous
      November 30, 2007 at 10:51 pm

      Sonja, Squeak as loud as you can Hun! the squeaky wheel will be heard and fixed. You still have rights, no matter where you have to stay! If it were me, I would be rifling it right back at the complainers:D They have no rights, they are not the patient and they can request their loved one be moved to another room:p It sounds more like a prison than a hospital. You deserve to be treated with respect just like all the other patients. I Pray you get to go home real soon! Take care.

      as my daughter tells me-Go To Your Happy Place!!!:)

    • Anonymous
      December 1, 2007 at 11:30 am

      :confused: So sorry to hear about the difficulties.
      Agree with so many of the responders. More tests need done and you need not to be shuffled to a nursing home until they have the correct diagnoses.
      WHat meds are they giving you?
      As the smoking, know it would be hard, i used to smoke, but in the states, it is no smoking, no how, no way, period.
      If God brought you to this, he will get you through it.
      Do you have any movement of arms or legs?
      Will be praying for you.

    • Anonymous
      December 13, 2007 at 9:31 pm

      I have been on bed rest as I had skin breaki down. It started last thursday and I had to stay inj bed for 4 days. I am only allowed up right now for three hours twice daily. Until things heal up it is going to be this way. I found out that to get the psychiatrists to come up I had to let the charge nurse know I wanted to see them. They are fooling around with my sleeping meds and now I am dealing with insomnia as well. Physio is telling me there is nothing they can do to work with my legs as long as I am unable to move them on my own or have any flicker of muscle activity and my hands are kind of less cramped up but there is nothing I can do to strenghten them as I still can’t move them by myself. All I work on are my arms and shoulders. This is just continuing on but I am doing the best I can. I am just glad right now that I am allowed out of bed at least 2 times a day. It is much better than being in bed all day. I am tired of being in bed. To address the issue of being wrongly diagnosed I have to talk to the psychiatrist about it because the condition is psychiatric that they diagnosed me with so as soon as they come to talk to me I can adderess this situation.

      Hope you all have a good day and take care.

      Sonja

    • Anonymous
      December 14, 2007 at 7:46 pm

      I don’t know much but it sounds like MS or CIDP to me! (Not GBS) But I think further tests would help with the diagnosis. I say, break out, go to another facitily and get the tests you need done!!!!!! Nothing seems to be helping there so you might as well get out and try something new! I smoke and I understand that fixation, especially under times of stress (I started a year ago when I had an unfortunate situation). At least maybe you could go to Calgary and be in a facility there, at least you would have family near, since you will be missing work anyways, what does it matter what city your in!

    • Anonymous
      December 15, 2007 at 6:44 pm

      I just founnd out that the psychiatrists did not label me with this and that even my own psychiatrist told them that they were not to label me with a psychiatric label as I have had neurological problems in the past. They also agree that this label does not jive with whats going on. They just said that the doctors just don’t know what is going on and that is probably why they are saying this. They are going to make sure that this is not going to be what it is. They said they understood where I was coming from and that I don’t like being labeled with psychiatric things when they are not. This to me is good news as I at least have voiced this concern. I do not like being labeled with things I do not have and they understood that and have told me they will do what they can for me. The next task is now to talk to the neurologist about this and tell him how I feel about this and get him to look into changing this and to start looking at a new direction. Now that I have the psychiatrists on my side he can’t even try to say that I am a psychiatric problem and it has to be medical most likely neurolological. So things should be coming along. It just takes going through the proper chanels and going one step at a time. It really helps to have the psyciatrists backing you up.

      Still on temporary bed rest but hopefully soon that will soon change as soon as things begin to heal. I believe now I have enough people now to battle this and to start to get some proper answers and hopefully they will do something.

      Take care every one

      Sonja

    • Anonymous
      December 18, 2007 at 1:46 pm

      I talked to the neurologist about how I felt about the diagnosis and I told him I did not agree. I told him that certain tests had not been done and that I was feeling there were certain holes that have not been answered. I found out he is planning on doing another nerve conduction study in the three month mark which I agreed needed to be done. I told him that my symptoms came on exactly like the time I got GBS the last time. We talked about that and I told him about the fact that I had gone to pheonix for the symposium for GBS and have a lot of knowledge about GBS. I also said that I have heard about GBS from the leading experts in the field. I also informed him I am part of a forum with other GBS patients and that I know what I am talking about. He agreed that he would work with me on solving this mystery and would keep from jumping to conclusions right now and so I believe I have taken a step forward. He also told me I am doing well and he sees that in me. I think that is the key to this whole thing in the fact that I have gone through the appropriate channels and now I think things will change. I hope that this nerve conduction study will show something so I can prove once and for all that there is somrthing for sure. The reason last time the muscles in my legs did not react he said was because of the residuals of the GBS from last time and he thinks that is why they did not do the LP because the nerves showed fine. Hopefully they can figure this out he said there is so many things that are out there that mimic the same symptoms it makes things very hard and it is too late now to do a LP. The only test we can do is the nerve conduction study again and hope that it shows something.

      Hope all of you are doing OK,
      Wishing you all the Best in this season
      Sonja

    • Anonymous
      December 19, 2007 at 3:28 am

      Sonja ~ you go Girl!!! I am so proud of you for standing up for yourself and letting the doc know that you are very knowledgeable in the field of GBS. Wow! You have become so proactive and doesn’t it feel great 😀

      I wish for you a blessed Christmas season. Hugs and more hugs!

    • Anonymous
      December 27, 2007 at 1:25 pm

      They redid the nerve conduction study and told me that it acually looks better then the last one. So now I don’t know what to think. The doctor hasn’t talked to me yet about it because he said he was waiting for the results to come back still. I don’t know what more is going to happen and if there is going to be more to come. As the neurologist had also told me there are numerous conditions that present the same symptoms that I have and they are hard to diagnose.

      So I am going to ask him again what else is going to happen. There might be more tests. I think somehow the messages are not being relayed from my brain to the areas that are affected and that is ehat is happening but where this is happening I don’t know. As I can’t feel or move my legs from my hips down and my hands are also affected there is some kind of lack of ability for the nerves to function. The nerve conduction study shows the nerves are fine but the voluntary movements are not there. So there must be some type of blockage in them. I don’t know what might be happening but hopefully I will get an answer to this.

      Thanks everyone for your encouragement through this time it means a lot. I wish you the best for the New Year.

      Sonja

    • December 27, 2007 at 2:14 pm

      Sonja,
      I will pray that the New Year brings you new answers to your questions.
      Best wishes,
      Dawn Kevies mom