Spinal Tap results….. (New Poster)

    • Anonymous
      August 1, 2006 at 12:42 am

      So far this board has offered a ton of great info. Thanks in advance for all the info. My question is this…. My father developed an upper respiratory infection when we were out of town last week (Chicago). It lasted for a few days and seemed to get better. Starting 2 days ago, he had complained of weakness in his legs (very slight). Yesterday, he said his tounge had begun to feel numb. This morning, he could not lift himself out of bed. Arms, legs, and part of his face were numb. My mother rushed him to the ER where they immediately admitted him, telling us that he was pretty much a “textbook case” for GBS. To verify this, they did a spinal tap this evening. We waited for the results, with the neurologist telling us that it is very treatable and not to get too worried (he also said that the only way to treat it now was the plasma removal way, because the other way was not possible to get because of the current war??). When the results came in, the area they expected to be high, the protein level, was not. It was 42, with a normal being 15-45. The nurse immediately told us that we should be releived it was not GBS, because of how awful it was. So…. my question is, how devistating is it if caught soon like this? Also, just because the protein levels were not above normal, does that fully rule out GBS as a possibility, and if so, what is another diagnosis for this “textbook case”? This is just very frustrating, because the hospital we have him at is fairly small and they dont have any of the needed personel on hand in the evening, so they have just said he has to wait it out until morning. We are transferring him to a larger hospital, but that too has to wait until the morning. Sorry this is so long, but any advice, info, etc would be VERY appreciated. Thanks!

    • Anonymous
      August 1, 2006 at 1:19 am

      Don’t leave your father alone for even a minute! It may be to soon for an elevated protein level to show (he is near the top). GBS can present itself suddenly or more slowly. Should your father’s breathing become compromised it needs immediate attention. It is to early to know for sure whether it is or is not GBS. Yes, this is a frightening time but dad needs your constant presence until this is figured out for “positive”. The GBS family will be happy to answer questions from our own experiences and research. Keep in touch and let us know what you find out at the new hospital. I wish your father well.

    • Anonymous
      August 1, 2006 at 7:52 am

      hi & welcome,

      1st off, the csf protein count for gbs can give false negatives. 2ndly, other references list 3 or less as normal count. 45 & above is considered gbs quite possible. a better test is the emg/ncv. 3rdly, plasmapheresis [pp] is not the only way to treat gbs. ivig is better [less invasive]. the cdc has sent letters to all docs in the usa telling them to not Rx ivig. it is for political reasons. if your doc seems reasonable he knows he doesn’t really know gbs, just what he reads. explain all this to him & get his reaction. pp is better than nothing, but ivig is less invasive. where do you live? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 1, 2006 at 9:52 am

      Thanks for all the well wishes. They actually did not get him moved this morning. After speaking with the neurologist this morning, he went back and said that they did think it was GBS after all, as he got a little weaker overnight. They have moved him to ICU to start the plasma transfer and will then move him to the larger better hospital later this evening. So is this the PP you were referring to or the IVIG? They did keep telling us that they definitely expect a full recovery, its just a matter of getting through it. Thanks again.

    • Anonymous
      August 1, 2006 at 10:49 am

      dear dodnof,

      I dont particularly like saying this, but …… doctors do not know everything, and unfortunately they often do not admit to it and often only know what they read, just as gene said. You have to be your fathers advocate, and you have done the right thing in starting to find out things for yourself 😀 . Its good that they start the pp so soon, the sooner the better. Do you know how many plasmapharesis ‘sessions’ they are planning on doing? Also, you need to remember that if pp is done, it hopefully will stop the damage to the nerves, however, he then needs to start the healing process, and this does take time. PP doesn not cure him as such, so you will not necessarily see an [I]immediate[/I] improvement, and that does not it has not been working.

      Please keep us updated 🙂 Wishing you and your family all the best!

    • Anonymous
      August 1, 2006 at 11:12 am

      Please call or email the GBS/CIDP Foundation International with your name and address to get a packet of information and followup mailings. We keep our mailing list confidential and the information can be very useful to you.

      Barbara Katzman
      Associate Director
      GBS/CIDP Foundation International

    • Anonymous
      August 1, 2006 at 1:09 pm

      I will email for the info. Thanks. I am not sure how many sessions they are planning on. I have not been able to be up there today, but my mother hasnt left, so she is definitely watching out for him. As soon as I find out any more info, I will pass it on.

    • Anonymous
      August 1, 2006 at 10:12 pm

      it is possible to have gbs with a csf protein level of 43. i had a level of 43, 45,409 and back down to 49 all in the past year, with 4 paralysis events. there is only less then 10% of gbs cases with a low protein count, but it is gbs none the same. keep us updated and ask as many questions as you have. take care.

    • Anonymous
      August 2, 2006 at 12:04 am

      my protein level was 108 with the first round and the next summer i was in the hospital again with a protein level of 54 but my doctor said he didn’t treat anything below 60. So all of the doctors are different. And like someone else said, they really don’t know enough about this and sometimes they know nothing at all. We have to stay on top of things ourselves in order to get the right treatment and help when needed. I have had wonderful doctors and therapists but as I said, they were limited in knowledge at times. I had one doctor exam me and tell me i was no worse than a homeless person on the street and to get on with my life and quit worrying about it. I wasn’t the one worrying it was the people trying to determine my disability. But she really threw em for a loop. She was the only one to really be negative. I’m sure i’ve had more episodes with high levels since then but i have been very adamant about not going to the hospital unless I am on my way to paralysis again. I know that is not very smart on my part but I am not willing to go thru spinal taps and then not get treatment. so, i will wait until i am positive that something will be done if i need it. thank god i have been doing wonderful for the last year and ahalf.
      just hang in there and take care, things do get better a little at a time.


    • Anonymous
      February 20, 2007 at 1:30 am

      Well, its been a while so I figure I’d throw out an update. He received the pp, it was about 6 sessions I believe. He was in ICU for a solid month, pretty much completely paralyzed. He did finally start to get feeling better, could move a little, started to get movement back, but had zero strength. The docs said he was a miracle patient. He was very very close to having to be put on a respirator while in ICU, but he fought back that night and continued to get better from there on out. He went through about 2 weeks of physical therapy, and after that it was a good 2 months before he had most all his strength back in his limbs. But compared to many of the outcomes, they said his recovery was pretty miraculous….. so thanks for all the kind words, and insightful resources. This was a comfort to have a resource like this.

    • Anonymous
      February 20, 2007 at 8:39 am

      my protein level was 20 on the first spinal tap (i was mostly paralyzed, double vision, impaired speech, etc.), two days later they did another spinal tap and it shot up to 80 and so on. just because early spinal taps are normal, does not rule out gbs as mentioned by everyone above. listen to everyone on the previous posts and don’t let the doctors down play this in any way. some of them, tend to do that. it took three opinions for me to find the right doc. your family is in my prayers.

    • Anonymous
      February 20, 2007 at 1:47 pm

      Wonderful news! Give my best wishes to your father. You may want to get him posting here, because I’m sure he’ll have many questions as his recovery proceeds.


    • Anonymous
      February 20, 2007 at 11:05 pm

      They delayed my Dx and Treatment 6 days because of a high normal CSF protein only. This does not rule out GBS! I’m so glad he is getting treatment. Dr. Shawn

    • Anonymous
      March 2, 2007 at 7:01 pm

      When I was admitted to hospital seven years ago, I had almost the very same symptoms as your father. God Bless him and I hope he gets a good doctor familiar with GBS. Nothing showed up on my levels to indicate GBS, but my doctor transferred me to Loma Linda University, a teaching hospital and I was immediately diagnosed through and EMG and other reflex tests. He’ll be in my prayers.

    • Anonymous
      March 5, 2007 at 4:25 pm

      More tests! And listen to Gene!