• April 15, 2013 at 4:39 pm

      Has anyone had a relapse of GBSs with mostly stomach related symptoms. i.e pain, nausea, slownessof digestion?

    • Anonymous
      May 8, 2013 at 9:31 am

      Hi I was also wondering the same thing. I was diagnosed with demilinating neuropathy about 12 months ago and for the last 4 months or so had intermittent problems with jaw and neck pain along with mild pressure in the chest. This week I have been hospitalized twice with severe chest pains I thought I was having a heart attack. Luckily my heart is fine but they believe I have spasm of the esophagus. I have to have a barium swallow test. Apparently this is caused due to problems with nerves in the esophagus causing constriction. This in turn causes very painful digestion issues. I too am curious as to whether anyone with cidp/gbs has this problem. I got a bit suspicious when I read about the connection with nerves. Prior to all this starting pain was predominantly linked to arms and legs. Now all my most troublesome issues are digestive and cranial related. are your stomac in anyway similar to this. Getting a bit frustrated with feeling sick and tired and seem to be taking so many tablets I must rattle when I walk.

      Are your issues in anyway similar?

    • May 15, 2013 at 3:59 am

      Hi Sherrill. So glad you connected with me . My husband was diagnosed with a small fibre variant of GBS in 2010. He was treated in New York ( we lve in Ontario Canada) with 4 rounds of IVIG after over 8 weeks of symptoms.
      He had recovered almost 95% until this Easter , after a stomach virus , developed parasthesis- slow digestion and lots of nausea accompanied by the “belt” like feeling in his abdomen, pain in the upper and lower back, buttocks and now his left leg is loosing stability.

      Last time all limbs were affected and some cranial involvement but this time is is the torso.

      He is seeing Dr Bril in Toronto this week and hope she will shed some light and hopefully treatment on this latest flare up.

      Where are you located? do you have access to IVIG. In Canada it is almost impossible to have IVIG unlesd you present with total paralysis or unable to breathe….very discouraging.

    • Anonymous
      May 15, 2013 at 9:30 am

      Lovely to hear from you. I live in regional Australia and like your husband it is very difficult to get IVIG. I was told by my neurologist that it would t be considered until I can’t walk due to the cost and the fact that here the Red Cross covers the cost. So in the meantime I just continue to increase my pain medication every 3 weeks or so. But that being said I was once able to decrease for a short period of time. Like your husband the digestion symptoms are very new and no one has said the cause is the neuropathy. Your poor husband if he is like me he is sick and tired of being sick and tired – I frequently feel like I am getting the flu but it never eventuates. I must say I am very intrigued by the progression of your husbands disease because there doesn’t appear to be much out there for people who are given no real treatment and rate of progression, though this having been said I realise everyone is different. Many thanks for your contact and I hope your husband soon receives the treatment he needs.

    • Anonymous
      September 10, 2013 at 9:55 am

      Does anyone know someone who has seizures from stomach problems?

      Does anyone know anyone that has seizures and that have stomach problems? I am looking for someone who has the the 2 related. Constipation, Ciliac disease are included in this.