Please Help…..What would you do???

    • Anonymous
      February 15, 2008 at 6:26 am

      I have been having problems since 12-04-07. Left leg started going numb, followed by right. IMMENSE PAIN followed. My numbness got just below my belly button, which has caused me some bladder control issues. I spent 2 seperate weeks in the hospital in Charlotte NC.Ran the tests….about 15 MRI’s, 2 lumbar punctures, etc. Protein levels were not elevated, nothing abnormal showed up on the MRI’s.They gave me 3 large solumedrol infusions followed my 60 mg of prednisone by mouth per day. 1800 MG per day of neurontin, and 60 mg daily of cymbalta.
      I ws told that a viral infection hit my spinal cord, causing it to swell, thus causig the pain and numbness. It was then suggeset that I have a form of GBS. Then polyradiculopathy.
      I’m now in my 10th week. My numbness is still here. and my pain is still UNBEARABLE at times. My feet and legs feel like they will explode every day.

      My neuro has me going to a pain clinic. They have me on 60 mg of oxycontin every 8 hours PLUS fentora tablets for breakthrough pain which is NOT helping…….I can’t even tell that I’m taking these most of the time. Not to mention that the Dr. at the pain clinic said “I’ve treated a lot of people with GBS, and you do NOT have it”.
      My primary care did a referral to the Mayo since I have no true diagnosis, NOR am I really being treated (no IVIG nor anything else except “Wait and see”.
      The Mayo has reviewed my case and decided NOT to see me. Tried to get into Duke, and it’s going to take me MONTHS to get in there.
      WHAT SHOULD I DO????? I can’t keep going with things like they are, and I am concerned that the longer I wait, the greater possibility for permanent damage. does ANYONE have any suggestions???
      I have even contemplated going to one of these major neuro facilities and just being admitted through the ER.
      Please help……..I am running towards the end of my rope.
      Thank everyone in advance, and God Bless you all!!!!!

    • Anonymous
      February 15, 2008 at 9:02 am

      Either find another local neurologist to treat you or go into the ER.

      The fact that your neurologist gave you steroids while believing that you have GBS is not good. GBS & steroids may not mix – they could actually make you worse.

      Is your pain & numbness progressing or is staying pretty much the same? Have you had an EMG done?

      I’m not sure on pain meds but I really don’t think that Oxycontin will help with nerve pain.

      Good luck,

    • Anonymous
      February 15, 2008 at 11:47 am

      [FONT=”Comic Sans MS”][SIZE=”2″]Chris,
      Let me tell you a scary story.
      I first went to small local hospital via ambulance thinking I was having a heart attack (Unbearable upper chest and back pain, numbness, tingling and weakness in legs and arms). ER staff declined to admit me when it was determined not to be heart attack. Hours later found wandering in parking lot of same facility, eventually admitted to hosp. Had gall bladder surgery :confused: , requests for neuorologic consultation ignored.
      Went home, ambulance back to same hosp. Treated for possible infection from surgery, put on patient administered morphine pump. Requests to see neurologist again ignored, sent home after 4 days. Collapsed completely 2 days later.
      Next attempt, ambulance refused to take me to larger hospital ( too far away) so back to what I now think of a Hell Hospital, where I was lectured about managing my pain medication, ignored when I said I couldn’t walk or stand, then shunted off to a side room for 4 hours till my friend showed up and demanded an ambulance to the big hospital.
      There I was taken directly to express admit and seen by an entire team of specialists. These are the same wonderful people who are still managing my care after 8 long months.
      Initial lumbar puncture showed no elevated protein levels in the CSF, but the other symptoms were, symetrical ascending paralysis which had reached the lower trunk and upper arms, and an EMG suggested GBS.
      5 intensive IvIg treatments (3 in ICU) and effective pain management (morphine) and many more tests.
      Though I have had relapses, and my dx has changed to CIDP, I am back to 85% and will be able to go back to work next month.:)
      This has been rather long winded, but want to stress to you the importance of getting treatment NOW. Get a firm diagnosis, and do it somewhere big, preferably a hospital that is connected to a University or a teaching hospital like mine here in Pennsylvania.[/SIZE][/FONT]

    • Anonymous
      February 15, 2008 at 3:13 pm

      Thanks for the replies.
      I have had an EMG which showed slowing of the nerves, but to quote the neuro, “Not the amount of slowing usually indicated by GBS”.
      I have tried to get into the Mayo, and there are 2 teaching hospitals near me, Duke University and Baptist Hospital (Which is part of Wake Forest Uuniversity). I have contacted both and plead my case only to be told that the soonest I can be seen is between 6 weeks and 2 months.
      I obviously can’t continue like this. Does anyone have any suggestions in NC?
      or should I just present mysely at the ER, when it gets bad again???

      Very Frustrating………….

    • Anonymous
      February 15, 2008 at 9:17 pm

      go to the ER at either Duke or Wake two of my sons have been hospitalized one in each of those. I wish I still lived down there near either of those. Once you present in the ER they will have to follow through and bring in an oncall neuro who will have to see you and you should be able to get treatment started. I was diagnosed in May by one doctor although I have been going through this since march 28th of 07 and now the one new neuro started treatment then walked out basically abandoned me in the hospital among other things anyway the neuro I see now has done one week of Solumedrol and I am on 90mg cymbalta and 10/650 lorecet every 4 hours and fentynal patches 75 mcg every three days. Needless to say the pain breaks through and is at about a 5-6 all the time but has been getting worse. I wont go to Mayo but would love to be able to get to U of M in Minneapolis but right now we cannot afford it and it is hard for me to ride long distances with the pain. But at least you have the opportunity to walk into an ER of a substantually great hospital and I can bet you that you will get treatment almost immediately. If your EMG shows a problem but does not show alot you are in the beginning of this disease if that is what it is and it may not show much. Good luck to you and I hope you get treatment soon and hope they can help your pain level I know how that is. Good luck and best wishes to you!

    • Anonymous
      February 16, 2008 at 7:53 am


      you can keep raising your neurontin up to 5600 mg/day. try cutting back on the prednisone. it is harmnful at 60 mg/day. you must taper off, not cold turkey. if pain level does not go up, you know it is doing nada & should be discontinued. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 16, 2008 at 7:34 pm


      [COLOR=black]Like others, if you can’t get a referral to a large hospital, then go to their ER. It may cause an insurance nightmare down the road, but if NC is like California, if you go to an ER, you cannot be turned away for an inability to pay.[/COLOR]

      [COLOR=black]If you go the ER, please make sure you take someone with you. You need someone write down the answers to your questions and possibly some to advocate for you. You also may need someone to help answer questions the doctors will ask you.[/COLOR]

      [COLOR=black]I have some questions about your case. To quote, “I was told that a viral infection hit my spinal cord, causing it to swell, thus causing the pain and numbness. It was then suggested that I have a form of GBS. Then polyradiculopathy.” First, how and when did they arrive at the viral infection diagnosis? What specific diagnosis were they thinking? [My guess would be West Nile Virus or something similar.] More importantly, do they now think your symptoms are an autoimmune response to the infection, or are they discounting the infection theory? Have they ruled out transverse myelitis? Based on the results of MRI, they probably have, but make sure, as most people with TM are originally diagnosed with GBS. That is not a question I would ask at an ER, but if you get admitted to the hospital itself, I would ask for sure.[/COLOR]

      [COLOR=black]My second set of questions relate to a timeline. How long was it from 12-04-07 when you first went to the hospital? When you went for the second time? The reason for this question is that some doctors think of CIDP as a “form of GBS.” So with your symptoms and the time line, they may have been thinking CIDP, while not expressing it to you. In Europe, they usually write out CIDP as “chronic inflammatory demyelinating poly(radiculo)neuropathy”, to highlight that the never roots (at the spine) are involved as well. Hence the comment about polyradiculopathy. If you are still getting worse, then GBS is by definition ruled out. What will complicate this exclusion is that you could have axonal damage to some nerves, which will slow the healing process considerably. [/COLOR]
      [COLOR=black]If they treated you with solumedrol and prednisone while you were within the time frame for GBS (less than 8 weeks), then don’t go back there. Kelly is right; they are not up on how to treat GBS.[/COLOR]

      [COLOR=black]Godspeed in getting this thing under control.[/COLOR]

    • Anonymous
      February 16, 2008 at 9:06 pm

      It was about 2 weeks from the time I went to the ER on 12-04 until they originally said it could be a viral infection. According to the Neuro, They ruled out everything else, and since there had been so much time pass, he felt like it could be a viral infection which would not show up on a test, but still cause spinal cord swelling. They did rule out transverse myelitis, as well as MS, spinal menengitis etc. And I think now they have ruled out the infection theory completely
      After my initial visit to the ER on 12-04, I ended up going to the ER on a number of occasions, as well as an spine orthopedist, and my primary care dr.
      It was a little over a month between my first visit to the ER and when GBS was mentioned. I was told that since I had made some improvements (although very small improvements), that they thought is was a form of GBS instead of CIDP. The reason he said he thought it was “a form” of GBS is because I Never had any parylasis……only numbness and TREMENDOUS pain. I think he threw in the poly radiculopothy as part of an explanation of this different form of GBS.
      The trips to the ER (and I am up to 14 I think) were all for pain control.

      After finding this board, and researching on my own, I have a lot of questions and uncertainty about my diagnosis. This and the fact that the only form of treatment I have had is the steroids, which haven’t helped, I just don’t feel like I am getting the care that I need. I appreciate ALL of the responses I have gotten………..

    • Anonymous
      February 17, 2008 at 7:52 am

      chris, you really need a 2nd opinion. take care. be well.

      NC UNC- Chapel Hill, Dr. Colin Hall. After a single evaluation, he knew what it was

      Carolina’s Medical Center!!!! 2nd largest healthcare system (at least on East coast). Learning Hospital. Large Neurology dept. with both pediatric and adult experience in GBS (my son being the most recent and youngest 17months). Try the Charlotte Downtown branch (main branch).

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 17, 2008 at 8:30 am

      I spent 2 seperate weeks in Carolinas Medical Center (Downtown)………that is wehre all of the Dr’s that have treated me are located.
      I am actually seeking a second opinion other that the one I got at CMC………

      I will definately look into Dr. Colin Hall at UNC-Chapel Hill though………Thank You


    • Anonymous
      February 18, 2008 at 2:28 am

      I must admit any time immense pain is evident the medical staff gets weirded out. They only see the pain and don’t get beyond that point.
      My pain doctor asked me when my CIDP was going away. He’s a department director of a major hospital. I replied,” Does MS go away???”
      Pain docs do not know that much about rare illnesses-they deal mostly with ortho/injuries/cancer pain.
      Your Primary Care doctor should call some places and get them to see you immediately. That’s part of his job-coordinating.
      Do take a friend with you-a strong minded friend or two who will stand up for you and make sure you get treatment/treated well by staff.
      The ER department is so over crowded and busy they don’t have the time or inclination to search for exact reasons for a neurological illness. Too often you are sent back home.
      I am very disappointed that CMC couldn’t diagnosed you.
      Please keep trying.

    • Anonymous
      February 28, 2008 at 11:37 pm

      When I was first diagnosed, I wanted to go to the Mayo Clinic for a second opinion. The IVIG was being given too far apart and I was deteriorating quickly. I tried to get an appt at Mayo, but was turned down. So, I just showed up there! It was a 1,200 mile trip and I made it with my three year old! It was worth it, though because I got in, was diagnosed with CIDP, and a treatment plan was made. That was about 12 years ago. Wish you all the best.

    • Anonymous
      March 1, 2008 at 1:37 am

      Chris, Don’t Give Up!!! Keep up what you are doing and like others have said-Take Your artillery with You! Perferrably ones who will speak up and out when you don’t get what is needed! Once in the hospital seek out the heads of the departments and staff and don’t take anything laying down.

      I know what you are going through, many times over, and it will change for the better.