Has something similar happened to you

    • September 30, 2013 at 6:55 am

      I’ve not posted before but am getting desperate for any sort of help or advice. I am a 65-year-old woman who was diagnosed with GBS in mid 2009. I was recovering from a bout of pleurisy and woke up one night with the most excruciating pain in my back and across my shoulders. Nothing would alleviate it. Later in the day my feet and hands developed pins and needles, then numbness which started creeping up to my knees and elbows, where, thankfully, it stopped. I also lost use of my right hand and arm and my blood pressure was all over the place. It took four weeks and muscle and nerve conduction tests for a diagnosis of GBS. Six weeks later I had another lot of nerve conduction tests, which showed my nerves were recovering, so I received no treatment. I was told I was very lucky that my GBS had been relatively mild and yes, eventually, the numbness disappeared, so did the pain and my arm also recovered.
      However, towards the end of 2009, I got another severe respiratory infection. A couple of weeks later, I started experiencing severe pain again in my back, and also started having problems with balance and movement. From then on every time I would get an infection, the same thing would happen. Unfortunately, the reaction to the infection also started to get more severe and it would take longer for me to recover. And the recovery was no longer as good. From initial two-week bouts, my recovery time now is two months. During the worst of it, I can barely hobble from one place to the other because of the pain, difficulty in movement and balance. Fatigue has also become a huge issue.
      My neurologist says it is just my nerves reacting to the infections, since two further nerve conduction tests have shown no real changes. It is not uncommon for me to get two or three infections a year.
      I have been on Endip, which helped for a while. Now I’ve just started taking Lyrica. Not sure how that will work as it apparently takes a while to build up in the system.
      I am just hoping someone out there has had a similar experience, and can share it with me, as I’m starting to lose hope that this will ever be resolved. I used to be such a positive person before all this happened.

    • GH
      September 30, 2013 at 2:05 pm

      Loss of balance, and fatigue, suggest CIDP as a possibility. Nerve conduction tests may be inconclusive when taken too early. A neurologist should keep an open mind about the possibilities until they are ruled out definitively. Just calling it a nerve reaction doesn’t amount to much.

    • September 30, 2013 at 7:31 pm

      According to WebMD, Endip belongs to a class of medications called tricyclic antidepressants. It may be used to help alleviate symptoms associated with GBS, but does not appear to treat GBS itself. I think a good Neuro who is experienced with GBS/CIDP should be involved, if for no other reason than to provide a 2nd opinion.

      I tend to agree with GH that it sounds like you might have the chronic form of GBS called CIDP, or one of its variants. There are other tests that can help determine GBS, CIDP and a good Neuro would know how to administer them for proper results.

      Are you near one of the “centers of excellence” listed here: http://www.gbs-cidp.org/home/get-support/centers-of-excellence ?

    • September 30, 2013 at 11:52 pm

      Thank you GH and Jim-LA for your posts. Unfortunately I’m from Melbourne, Australia and we don’t have access to those centres of excellence. The neurologist has discussed the possibility of undertaking IVIG treatment, but to access it here, certain criteria has to be met before treatment can be given, and I apparently have so far not met enough of that criteria. I’m not sure if the same applies elsewhere, but it does here. To that end he has scheduled another nerve conduction test. But I agree with you, that CIDP is a consideration. I know how I feel, and how it sits with what I have read about CIDP. I think you’re right. It’s time for second opinion.

    • October 1, 2013 at 1:37 am

      The GBS-CIDP Foundation has a chapter in Victoria and maybe they can provide some referrals. Contact info:
      Melva Behr
      Beaconsfield, Victoria
      03 9707 3278
      Email: behrsden@optusnet.com.au
      Website: http://www.ingroup.org.au

    • October 1, 2013 at 3:30 am

      Thank you Jim-LA for that info. I will contact them.

    • December 3, 2013 at 11:14 am

      One of my relatives had something like this few years back and she is now very much healthy. She use to go to a neurologist here in UK for more than a year once a week, she had to eat balance diet and do regular exercises as well as eating regular medicines. You should also just follow the instructions of your doctor and things will hopefully start to go well for you in a few weeks but if you are not feeling any improvement in couple of months you should change your doctor.