New to forum…..need help / advice

    • Anonymous
      January 29, 2008 at 1:09 pm

      I had a shoulder surgery (was just a scope) on December 4th of 2007.
      Left foot and leg started going numb that night after I got home.
      Went to ER to be checked for bloot clot etc. Problem kept getting worse but with excruciating pain. Went back to surgeon, who referred me to back surgeon (thought it was a disk) and when MRI’s came back OK I was referred to a neurologist. In the meantime, I had 7 trips to the ER due to this pain, which by this point was in both legs and more intense than anything I have ever experienced. Was originally diagnosed with a viral infection that had hit my spinal cord, thus causing the cord to swell, cutting off feeling and causing pain. Was treated with large doses of Solumedrol and Predinose.
      My white cells were 1 number higher than normal and my protein level was normal in my spinal taps.
      was admitted into hospital twice (for a total of 9 days) and was numb from belly button down (except for the pain).
      My neurologist came to the determination that I have a form of GBS, that he calls polyradiculopathy. My nerve conductivity tests showed damage and slowing of the nerves in my lower legs, but not of the extent that the neuro. said he usually sees with gbs.

      One of my biggest issues / concerns is my pain level. the pain in my feet/lower legs has been undescribable. I gets to the point that I can only lie in my floor and scream…..uncontrollably, and sometimes it lasts for hours. Was on 1800 mg of neurontin, 60 mg od cymbalta, as well as oxycodone for pain. It really didn’t help, so he dropped my neurontin to 900 mg, added 150 mg per day of lyrica, and put me on oxycontin…….still had a lot of breakthrough pain. Sent me to a pain clinic, who took me off of the oxycontin, and put me on a fentanyl patch, which seems to help.
      My other issue is my sleep…I get about an hour or MAYBE 2 a night. it seems with me that after I lie prone and go to sleep, my numbness gets drastically worse, which in turn causes my pain leven to shoot through the roof.
      Does anyone else have similar symtoms? and IF so, are there ANY suggestions???
      I’m sure everyone here has had the same fears and frustrations as I have (and still do). Thanks for the time to read this, and I look forward to any suggestions.

    • Anonymous
      January 29, 2008 at 1:35 pm

      Chris, I have GBS and the major complain with it that I have seen on this forum is the fatigue. People want to sleep to gain energy and it is very hard to do and seems you never can get enough sleep. Others will be here to add suggestions about the meds. Welcome to this forum and we all know how frustrating this can be trying to get diagnoised. Most of the time it is a process of elimination as they follow the tests that the insurance companies tell them to follow. Be patient and continue to have hope that what you have can be reversed like the GBS. It is a very long Journey and everyone of us is a little bit different from everyone else.

    • Anonymous
      January 29, 2008 at 1:38 pm

      Hi Chris, glad you found us.

      I am so sorry you are going through that awful pain. Nerve pain is the worst to try to explain to anybody. I am on Cymbalta 60mg x 2 a day and it helps for my residual pain, however the breakthrough pain is still there and I try to deal. I did try Lyrica, but It had awful side effects so i decided to stop and deal with it when it comes around as it isnt toooo often anymore. Its amazing how everyone reacts so differently to each medications.

      How have you felt about your neuro? have you been happy with the treatment so far? Have you felt that the progression has stopped already?

    • Anonymous
      January 29, 2008 at 2:21 pm

      I have been pleased with my neuro. In the beginning, I was starting to have doubts, so I went to Duke University for a second opinion, and pretty much got the exact same diagnosis. I wouldn’t say that I feel like the progression has stopped, it just kind of keeps changing, but I definately feel better than I did 4 weeks ago. I still have a lot of numbness, and pain, but my numbness has pretty much gone back down to my lower legs and feet and my pain is not as frequent as before.

    • Anonymous
      January 29, 2008 at 3:50 pm

      Welcome to this forum. I hear your frustration with the pain and numbness. I was diagnosed with GBS in March of last year and had similar concerns with everything–especially numbness getting worse at night–so much that sometimes it seemed I would not be able to move after sleeping. I did not then have that much pain. I tried changing positions to sleep and this helped. I would get up and move to another place to sleep and this helped–both to move and the different pressures/positions–for example I would sleep a while in my bed, then go to the couch, and then the easy chair… Lots of pillows to keep pressure off the legs/arms helped; put a pillow/cushion between any parts that touch. You might try one of those eggcrate mattress covers to reduce pressure. Keeping my feet warm helps a lot now. I have to wear socks.

      The other major thing to help is keeping my feet up in the day and limiting walking. If I do this, the pain is much better and I can sleep better and get more restorative sleep. I think that fluid builds up a little in the legs and this causes pressure and pain on the nerves (even though I do not get obvious edema).

      Aleve also helps me. It is a non-steroidal anti-inflammatory (cousin of naprosyn) as does Cymbalta.

      I wonder if one problem people might have with sleeping is an alteration in pH or oxygenation level that might affect nerves more in the night. This could be one reason that change in position helps and why cold makes things worse.

      With Hope for cure of these diseases.

    • Anonymous
      January 29, 2008 at 9:19 pm

      UR not taking enough neurontin. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 30, 2008 at 2:27 am

      Hi Chris, Welcome to the Family. As Gene stated-raise the neurontin, it works the best on nerve pain. It makes no sense for you to be on such a low dose, and not able to sleep doesn’t help you either. Less pain=more sleep. I understand about the sleep, obviously I don’t sleep much either since its after 2a.m. now. Have you tried chamomile tea before bed, a warm shower/bath ect? I know its not much but its worth the try. They don’t work for me most nights, this whole month actually. You might want to try raising your pillow, a gradual incline with support going from your lower back and especially under your neck. It helped me get 4 hours last night, with a smidge more comfort than I usually have. I have a breathing problem now and it seemed to help to have the pillows at an incline. Hope you get some relief soon, everyone id soo different and sometimes it just takes alittle longer to find just the right combo of meds for a good result. Take care.

    • Anonymous
      February 2, 2008 at 5:40 pm

      Thank You all for the replies………I know that I am no different than all of you with the frustration that I have.
      I continue to research and try to find out as much as possible. Another of my main concerns is that I am not sure that GBS is what I have. It appears to me that although I have a few symtoms that are very typical, it appears that i do not have the majority of GBS symtoms.
      My neuro says that the IVIG would be of no benefit to me as far as changing the rate of my healing, but there doesn’t seem to be any form of proactive treatment.
      I suppose I just don’t know which direction to turn………or what to do now.

    • Anonymous
      February 6, 2008 at 9:59 pm

      [COLOR=”DarkOrchid”]Welcome Chris. Took three weeks before a neuro Dx my GBS. Started in my feet and worked its way up to my chest. Had five plasmapheresis Tx which started same day and took ten days to complete. Was put on the build up of Neurontin and have been taking 5600Mg daily for going on four years. Backed off for a month to 900 and willl never do that again. Neurontin is over $2800.00 a month. Thank God for Medicare. My feet are the worst and I still feel paralyzed around my torso. It feels so strong at times it seems to effect my breathing. It is sometimes the worst pain I have ever felt. My average pain is tolerable but I also have Diabetes T1 and it causes me flare ups regularly. My neuro just started me another regimine of pills, Lamictal (Lamotrigine) that I guess is like Neurontin. Then I have Vicodine for breakthrough pain. Can’t drive and I walk with a cane whenever I feel I can get out.

      I know what you mean about morning intensities. I get about two to four hours of sleep at a time. I have no control and even fall asleep at my computer. Fatigue is my biggest enemy. A trip to the store can put me down for a day or two. Fifteen minutes of heavy exertion can take a couple of hours to recover. just walking up stairs gets me to breathing heavy.

      I’m sure you will find much help here. This forum is the best and people here know what they are talking about. Good luck and take care.[/COLOR]