help in the hospital and i know more about his disease than anyone else.

    • Anonymous
      October 2, 2009 at 3:12 pm

      I am concerened. I dont think the professionals around me have any idea how to keep me safe, nor do I. they think I have gbs and there for as long as my ascending paralysis is not in any danger zone like my diaphram, then I am safe and do not need to be on monitors. my blood pressure drops down to 90 over 45 and 85 over 50 while I am sleeping and I keep waking up in a shaking panic. I think it is both the narcotics and the solumedrol that make me squirley but reguardless, I insist that I be put on the blood pressure and oxygen monitor. the nurses think I am crazy for putting myself on the monitors and one even tried to take it from me for another patient. she wont try that again. I cant sleep becasue i dont think I am safe while i am sleeping and as little as I know abourt this disease I beleive I know more than any of the professionals around me so I feel I have to monitor myself. any advice?

      the good thing is that my doctor ordered an ultra sound on every organ in my trunk. I think he was being a asmart ass and I just took him up on it anyway. my kidneys are good as is everything else but I am in excrutiating back pain and have to take those damn narcotics for it. it is a nagging pain. i this a pain that anyone else has?

    • Anonymous
      October 2, 2009 at 6:34 pm


      If they know you have had GBS in the past, they should know that there are almost zero chance that GBS wil re-occur. They should be able to move to CIDP and begin a treatment regimen.

      Get them off the GBS thought process, and tell them it is chronic, happening over and over. That is CIDP. Don’t get lost on acute or sub-acute. You have been describing symptoms to us for more than a month. That makes CIDP.

      Good luck.

    • Anonymous
      October 2, 2009 at 8:40 pm


      I hope they figure out what is wrong with you! When I came down with gbs 2 years ago, I had a real severe back ache.. I’m wondering if it was due to loss of muscle/nerves in such a short time period.. Hospitals are not fun, and best wishes for a quick diagnosis and speedy recovery… Have they checked for a bladder infection as well? take care … Deanop:)

    • October 3, 2009 at 2:59 am

      Hi Tara,
      I sympathize with your suffering. I hope you have a quick recovery.

    • Anonymous
      October 3, 2009 at 11:36 pm

      I am a little confused. On another thread you said that that you are believed to have cidp and probably a compenent of lupus (positive ANA and joint swelling and muscle pain, etc). Also you refer to several episodes of exacerbations. This does not sound so much like GBS, yet on this thread you say “they think I have GBS”. People can get GBS more than once–I think it is about 3% of people–and at the last symposium, one of the doctors said he had heard of someone having GBS four times, but virtually all the time, it is believed that if there are more than two periods of significant worsening, that this is CIDP not GBS. You said on another thread that you are getting plasmapheresis and recently had had a bladder infection and on this one say that you are getting solumedrol. Bad back pain can be a sign of GBS and probably exacerbation of CIDP, but it sound like other symptoms came first and so the back pain should be investigated for other causes–like incompletely treated kidney infection, pancreatitis, or kidney stone, etc. An ultrasound helps with all these, but other tests should also be done like a urinanalysis and amylase and lipase blood test. People can also get back back pain with high doses of steroids, so this may be a question to ask.

      Finally, we all are 100% supportive of monitoring if you do not feel right. There can be life-threatening changes in blood pressure and heart rates with exacerbations of CIDP or with GBS–called autonomic instability. You will know this better than others because you may feel your heart beating really fast or really slow or get dizzy with standing or headachey from a high blood pressure. When weakness affects the breathing muscles, it feels like you are not able to breath well enough and people feel air hungry and anxious. The most important thing about this is that the level of oxygen in the blood, although important, is not the whole picture–the lungs also get rid of carbon dioxide and it is easier to get oxygen in (oxygenation) than carbon dioxide out (ventilation). People with weak muscles feel that their lungs are not working well enough even sometimes even with a normal oxygen level in the blood because they are not able to get all the carbon dioxide out as well as they should because of the muscles not working well enough from the nerves not working well enough.
      WithHope for a cure of these diseases

    • Anonymous
      October 4, 2009 at 9:22 am

      Thank you WithHope for the explanation on breathing problems. This is a constant with me and gets really bad with exertion. All my breathing tests were fine and my blood oxygen is good, yet I have trouble breathing. How is ventilation tested?
      Sorry to intrude on this thread with my problem.

    • Anonymous
      October 4, 2009 at 12:57 pm

      One thing I will be mentioning to my neuro when I see him on the 21st is a recurrent lower back pain that no one can seem to figure out. I call it “posterior pelvic” pain, as it occurs in my lower back, around the belt line, right above the hip structure, but away from the spine. Has happened on both sides, but never both sides at the same time. They’ve ruled out arthritis, it’s in the wrong place for bursitis, and it’s not kidney stones. May not be related, but since it has occurred 4-5 times in the past year, I figured it would be worth mentioning.
      Also had a really bad backache in the spring that lasted for a couple of months. Had a lot of disagreement from doctors on that, too. One thought it was a Psoas (sp?) muscle, others thought other muscles, was never really diagnosed completely. Who knows.

    • Anonymous
      October 4, 2009 at 7:27 pm

      When Emily is in a flare or relapse she usually always experiences lower back pain. Her neuro has said this is common as she has had inflammation on her spine from the lower lumbar on down.

      Maybe a spinal MRI with contrast would be called for to see if you have inflammation.

      Hope that helps.

    • Anonymous
      October 4, 2009 at 9:01 pm

      My last excursion into a hospital I felt as if I needed one. I could then have replayed it time and again w/o exerting any more energy. And Have their vague responses on ‘record’! Because I did feel like a broken record. Sigh.
      Felt as if talking to fence posts at times!
      They’d ask me a silly question? I’d say ‘See my ‘Medical History Sheet’, a one page summary of my ‘history’, meds daily, ‘meds as needed’, plus all the docs I see regularly-w/phone #’s! IF they can’t read, THEY need more help than I do?

      BTW? Mid low back pain? Check out for Gall stones. That’s what my last PET Scan indicated, and all docs have ignored in this concern in the past. Seems like most docs are afraid to deal with it w/all else that’s going on.. HUMMM?
      Usually tho, a sonogram will do the trick – it showed up on my PET because I’m checked out for ‘other issues’. IF really lower? Could be kidney stones too. Seems as if some of the pain meds we take tend to ‘help’ us along w/this issue. Either way, that dull ache isn’t fun!

      Keep at it tho. Be assertive in a ‘nice way’? Honey gets ya further than vinegar. W/Docs especially. Trust me on this!

      Asides, I feels so GOOD when I stop beating my head against the wall? Lets the endorphins out or something….But it’s not a good habit to get into?

    • Anonymous
      October 5, 2009 at 12:23 am

      So frustrating! I’ve been in your shoes, feeling like no one was listening to me. I was just lucky that I lived in New York City and I found a great neurologist who listened and knew what to do.

      If you have a family member who can talk to your doctors on your behalf, have them do that. When more people get involved, sometimes they take you more seriously. If you don’t, see if the hospital has a patient advocate. The patient advocate is someone you can talk to who will then talk to your doctors & nurses about your concerns and make sure you get what you need.

      I think that you have a much better idea of what’s going on with your body, and some doctors can be extremely arrogant and not want to listen to you. It’s easier for them to ignore you when what you have is complicated, and it sounds like what you have is very very complicated.

      My other advice for you is to keep candy or cookies in your room when you’re in the hospital–the nurses always treated me nicer when I had treats for them.

      I feel for you. I’ve been where you are, but you have it much worse. Just remember this: things will get better.


    • Anonymous
      October 5, 2009 at 7:21 am

      Havn’t been here for awhile but I had to reply here. It took 3 wrong prognosis and 3 weeks before a new neurologist guessed right. Then after the spinal they were at odds to do a IvIg or PE. After starting PE they stopped the progression just as it was reaching my chest. Nearly every question I asked was shrugged off or ignored. I got online and did research right in the hosp. I finally had the right questions but it urked the Drs who wanted to know who was telling me all this. They seemed mad that I had been investigating my diagnosis. I finally caught a nurse leaving by the side door and stopped her. I asked when I would be over this and when I would be back to normal? Without looking me in the eye and as the door closed she said, “Never”. I’ve had little reason to smile ever since. I’m sure I wouldn’t be this disabled if the first and second Dr. had known all they should have. Of course the billing dept. didn’t make any

    • Anonymous
      October 5, 2009 at 11:59 pm

      [SIZE=”4″]I’d like to know why my post was deleted from this thread without any explination. Tell me moderator, what was so bad about it? It was nothing like Tara’s original post. I think you now went overboard.[/SIZE]

    • Anonymous
      October 6, 2009 at 2:43 pm

      Mike – Did you use profanity in your post? Are you sure you replied to this post & not the other one?

      I’m thinking they have adopted a zero tolerance policy on profanity.


    • Anonymous
      October 6, 2009 at 11:09 pm

      [SIZE=”4″]No. I did tell Tara hers was uncalled for. I also went into my bad relapse. To show she’s not alone with frustration. [/SIZE]

    • Anonymous
      October 7, 2009 at 9:22 am

      Hmmm….maybe you should private message GBSFI & see what they tell you.

      I don’t think they read these boards so I’m not sure if they’ll see your message.