Guillian Barre

    • Anonymous
      August 2, 2006 at 8:34 am

      I know someone that they are saying has this and they were not correctly tested for it until a week ago. They have all of the problems can’t walk,can’t use thier hands either. Since the correct test were not done and the medicicne was not given and it has been so long before any was given will they ever beable to do anything again. The first on set was at least 2 1/2 months ago for them.

    • Anonymous
      August 2, 2006 at 8:53 am

      getting ivig late is better than not getting it at all. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 2, 2006 at 6:42 pm

      Not getting the correct test, or for that matter, the correct treatment, does not mean that they will not improve. What is being done to help the patient at the moment?

    • Anonymous
      August 3, 2006 at 6:25 am

      this has been for 2 1/2 months now and he has been in 1 hospital that did not do spinal tap and then they put him in rehab and then he got sent to LSU Medical in Shrevport,LA and they did the spinal and found the high protein level and said that this is what we think with all the things that is going on but until we get the full report we are going by this… so now they are putting him back in rehab until he can come home with the correct treatment

    • Anonymous
      August 24, 2006 at 9:30 am

      I was told by my neurologist that how quickly you receive IVIG treatments do NOT affect the final outcome of the GBS and recovery. The timing of the IVIG may help speed up the recovery time, but all studies show that the final outcome of GBS is not dependent on the type of treatment given, the timing of treatment, or even the absence of treatment.

      I asked very similar questions of multiple doctors, and even my wife (a physiatrist (rehab doctor)).

    • Anonymous
      August 24, 2006 at 3:19 pm

      swimm,

      yes, the odds of a 2nd attack are higher than getting it the 1st time. 3% of us will have a 2nd attack. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 24, 2006 at 3:21 pm

      swimm,

      you got a line of bs. the sooner gbs can be stopped the less damage is done which equates to a faster more complete recovery. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 24, 2006 at 4:02 pm

      Thank you … I am appreciative of a definitive reply!

    • Anonymous
      August 24, 2006 at 6:57 pm

      Swimm,

      The information you were given about treatment by the neuro and others is incorrect. It is VERY important that treatment be given as early and as often as possible.

      I stand as testament to this. I had a relatively mild case of GBS, but was not diagnosed until 3 mos. after onset, and never given treatment. Today, I suffer from many residuals (weakness, neuropathies, pain) that most likely would have been either eliminated or moderated had I been given treatment early.

      Those of us who have been around on this forum for awhile have heard enough stories about how little doctors know about this disease and how often it is misdiagnosed or incorrectly treated to know what we are talking about. Unfortunately, this site is often the best place for complete and detailed information you will find. The medical community has not yet caught us.

      Please keep coming back here for more help if you need it.

    • Anonymous
      August 25, 2006 at 10:47 am

      Thank you … I have already learned a lot here that I did not know in the horse-pistol. I am really impressed with the group and the knowledge on this site. Thank you for the opportunity.

      Swimm
      GBS 7/06

    • Anonymous
      August 25, 2006 at 8:58 pm

      Hi

      My husband was diagnosed right away which kind of suprises me since I’ve read about all the people who were not. At first they thought he had a mild case of GBS and they gave him an IVIG treatment. He came home five days later but the paralysis continued to travel up his body. Anyway he was rehospitalized and received more than 60 plasmapheresis treatments over 3 months. He was vented for 11 weeks. After the 3 months his new neuro told us that there was a greater chance that my husband would lose the use of his legs below his knees and his arms below his elbows because it had been a long time since had walked.

      He started Prednisone and it worked. Three weeks later he came off the vent and 2 weeks after that he was transferred to Rehab. He spent a total of 6 1/2 months in the hospital. February to Aug 2005. He’s currently home on disability.

      All this to say that he was diagnosed right away and he still got very ill. I fogot to add that he was diagnosed with CIDP before they started the Prednisone.

      Ask questions and be informed. The people on this site are amazing. I’ve lurked here for a long time. I wish I had found it sooner and posted more often while he was hospitalized.

      On a happy note… he is walking and moving his arms! 😀

      HeHasWhat
      Husband has CIDP Feb 05

    • Anonymous
      August 25, 2006 at 11:39 pm

      Welcome, so glad to hear that your hubby is on the road to recovery.

      Jerimy

    • Anonymous
      November 12, 2006 at 9:28 am

      Hi,

      My name is Ava and I have been told I have post virus syndrome. My symptoms began Apr 16, 2006 with the worst sore throat of my life. During the following week I felt weak in the legs. On the 23 Apr I was put on an antibiotic. On the 24 April had to call an ambullance because of difficulty breathing. I felt I was going to die. My hands and feet were numb. ECG, blood work, CT all normal. April 26 I had to return to Emerg. Weak legs, numb hands and feet, difficulty breathing. Felt like someone was stepping on my chest. My voice has been hoarse and very weak. Was put on antibiotics and prednisone May 30 for very swollen base of tongue by ENT which made me worse. After seeing another ENT I was told this was normal for me. My family doctor has told me the CT of the chest has ruled out any lung pathology. He has also ruled out any heart concerns with an extensive array of tests. I continued to have episodes of difficult breathing, difficulty in swallowing, numb hands and feet, lack of appetite, chest palpitations and irregular heart beats. On 7 June I had another breathing attack with arm weakness and when I tried to get up and walk my legs were so weak they actually collapsed. Went back to ER, said they didn’t know what was wrong with me.I had a brain and neck MRI and a brain CT – all normal. I went down hill from there, much difficulty walking until the 19 June I had a major attack, Heart raised out of control, hands and feet went numb, could barely move. Went back to ER, tested reflexes – which were hyper, then to Neurology Hospital. Reflexes were normal – told I had post virus syndrome.
      Had EMG-only abnormality found was long F waves. Family doctor noticed knee reflexes were off. In August I really noticed by vision getting blurring, and fought off double vision. I had laser therapy twice on my eyes about 4 years ago and was given a normal eye test early April 2006. Currently I still have weak legs, occasional tingling, numbness in hands and feet, difficulty in breathing on light exertion, and at times I have to stop everything I am doing because it feels like someone’s foot is on my chest. I have three sets of eye glasses, reading, computer and long distance. Could I have a mild form of GBS?

    • Anonymous
      November 12, 2006 at 12:21 pm

      Ava,

      The progression of symptoms for GBS usually takes between 2 to 4 weeks, sometimes quicker. My concern is that you noticed your first symptoms in April (after the sore throat and antibiotics), and then it seems only in August you noticed your vision becoming blurred. Whether the vision is related I’m not sure, because many of us have had blurred or double vision. In fact mine even seemed worse just as I was being weaned off the vent. It doesnt sound like you had a spinal tap, which could possibly have given some answers. I am concerned however by the difficulty you are having breathing, and concerned too that something more doesnt seem to have been done to help you with this. When they gave you a diagnosis of post virus syndrome, did they give you any indication as to what that could mean? I am so frustrated at the lack of willingness by some medical professionals to try and get to the bottom of what is causing illnesses. There are so many possible answers ….. one of them obviously being GBS, which you are still dealing with and your symptoms and residuals keep flaring up.

    • Anonymous
      November 12, 2006 at 12:59 pm

      hi ava & welcome,

      ditto ali. from what you describe i’d go so far as to say you may have cidp [chronic gbs] rather than gbs. the fact that you have abnormal f waves means they did the ncv part of the emg & that should have told them gbs, certainly a neurological prob. you need new docs. where do you live? i keep a list of docs. take care. be well.

      gene gbs 8-99
      in numbers there is strength