Hubby of GBS patient – New to Forums

    • Anonymous
      August 20, 2010 at 6:54 pm

      Hello to all you guys out there. I’m new to this forum. This is indeed a very good platform given by this foundation to talk to sufferers of GBS.
      My dear wife Bubbly, who’s 30 yrs old, problem started with mild fever (evening only, used to subside by morn.) with numbness in hands & feets since 22/05/2010 following strenous gymming for 2-3 months post natal. Our family Doc. said it might be a viral fever. Gave 1-2 medicines. But weakness was progressing. Later on she was diagnosed with Typhoid by her Gynae. In her hospital the physician gave a course of antibiotics but said she w’d be needed to be admitted in the hospital to administer intravenous Glucose if the weakness doesn’t subsides for Enteric Fever. But just after 2 days she was too weak to walk on her own properly. We admitted her in the hospital on the even. of 10/06/2010 & intravenous glucose started. The very next early morn. on 11/06/2010 she suffered right facial deviation. Docs. at first thinking of it as Bell’s Palsy adminstered Dexamethasone (steriod, which I later came to know sh’dn’t be given in GBS). The Docs. then followed a Brain MRI for any clot or haemorrage but negative. Later in the day we took her to a neurologist who just by Physical examination and going through the case history diagnosed her with GBS. she was immediately admitted in the ICU and IV IgG started for 5 days. Later on while in ICU she suffered diplopia on left gaze, B/L Facial palsy (complete facial paralysis), used to speak with difficulty, used to cough while drinking a single small sip of water & areflxia. She was given IV IgG for 5 days in ICU in hospital where she stayed for almost a month in private room to watch out for any further complications such as pulmonary. Thanx GOD, it struck till abdomen only. She was discharged on 06/07/2010 & we brought her home. Now one & a half month after her discharge she’s still not able to stand, even support (she starts to shiver), can sit on her own without support but not for long, diplopia far better than before, grade 4 strenth in arms but ataxia & grade 2-3 in lower limbs. Lesser numbness but heaviness in whole body, incontinence in bowel & urine, stiffness in muscles (suffers alot of pain while stretching exercises).
      I wanna know when she’ll be able to walk or atleast stand on her own. When will her numbness fade away? We got married just 3 yrs back & I have a son who just turned Two on 04/08/2010.
      My life is like hell as I have to look after both of ’em shunning my work. What are the chances of relapse in her case. (Yesterday probably she overexercised & following it felt heaviness in her chest, I was petrified)
      I can easily comprehend the pain & agony by which all the members here went through. It’s such a devastating experience, I guess no one sh’d ever experience. May GOD have mercy on all the GBS patients.
      Are there any medicines available which assist in regeneration of Myelin ?
      Please guys help me out, I have a barrage of other questions to ask.

      with warmest wishes



    • Anonymous
      August 20, 2010 at 8:45 pm

      First of all, welcome to the forum. Second, make sure you sign in on the main forum international page. They will help you with a lot of questions. We are all here to help and encourage. We will keep you both in our prayers. I just want to say that even the littlest event is just a baby step along the way to recovery. We know there is always hope, and also know that each of responds in their own way and their own time. Just provide her the love and support she so readily deserves.

    • August 20, 2010 at 9:16 pm

      Hey Bubb Hub

      Welcome and sorry to be welcoming you.

      I often think about what my wife has gone through in order to keep our house from falling apart. I am grateful that she has the reserve energy to keep it together.

      Sounds like things are difficult. Can your parents watch your boy for you at all? That will give you both some quiet time that is much needed. Take help from anybody who offers. We have appreciated the food that people have dropped off.

      I’m not sure that anybody here can tell you when she will walk, but there is no reason to think that she wont. It will take time and you will have to be satisfied with small steps. Measure each one on a small scale and celebrate when she shows improvement.

      I wish you the best

    • Anonymous
      August 20, 2010 at 11:11 pm

      So sorry your wife has GBS. Sounds like you need help. Take any help you can get, and don’t be afraid to ask family members or friends. You need to take care of yourself during this journey of your wife getting better.
      No one can tell you when she will be able to walk again or stand on her own. You can read GBS forum postings of others that have gotten GBS and the majority of them have walked again.
      Is she getting any physical therapy or more treatments?
      With physical therapy, further needed treatments and plenty of rest she should make continued improvement.
      I also had no control of the bowel and bladder. With the help of stool softeners and medication for the bladder, control did come back.
      Don’t know of any medication that helps with regeneration of the myelin.
      Good luck to you with continued improvement for your wife.
      Ask all the questions you want and please keep us updated as your wife progresses


    • August 21, 2010 at 10:18 am

      If I read your post right, your wife started this 5/22/10 and you brought her home in June 2010. I was rapidly discharged after treatment for GBS and left the hospoital after three weeks. BUT, I went to rehab, not home. I think your wife belongs in rehab. Has anyone said that to you? She needs professional setting care.

    • August 21, 2010 at 11:07 am

      [QUOTE=Hedley LaMarr]If I read your post right, your wife started this 5/22/10 and you brought her home in June 2010. I was rapidly discharged after treatment for GBS and left the hospoital after three weeks. BUT, I went to rehab, not home. I think your wife belongs in rehab. Has anyone said that to you? She needs professional setting care.[/QUOTE]

      Agreed, a good rigorous physio program will be important to her returning to normal. When she’s ready and under proper care or intense supervision the pool is a wonderful place to start recovery.

    • August 21, 2010 at 2:46 pm

      Sorry to hear the news about you wife, but she will get better.
      It seem that you need to question your doctors about more treatments and also the proper rehab exercises. Don’t wait for things to return on their own without medical help of some sort. More damage can be done here.
      We welcome you with open arms and please keep responding with as many questions as you can think of. There are so many here who can help with good knowledge and experience.
      Get back to your neuro as soon as possible..

    • Anonymous
      August 21, 2010 at 4:34 pm

      At the outset, thanx to all of you for the warm welcome & kind support. Really appreciable.
      Now @ Pat G, thanx for guiding me to sign in on the main forum. I did it according to your advice.
      Now @northernguitarguy, thanx for your best wishes. My parents are not too keen to look after my son as we’re not at good terms with my parents. Infacts we had fights & quarells almost each day before GBS struck my dear spouse Bubbly. Due to those fights we both were & still are under lot of depression. Me & my doctor also think that those fights played some part in this episode of GBS. Can that be true? She also had a history of migraine around a year ago due to these differences.
      Now @Matteyrae, yes I certainly need help but unfortunately there’s no one to help. Yes she’s getting physiotherapy twice a day. As regarding treatments she’s taking Coenzyme Q10 (300mg) – OD,Methylcobalamin (1500 mcg) – FELICITA OD,Shelcal OS (Calcium with Alfacalcidol) – OD, Oxcarbazepine (300mg) – OD etc. as advised currently by her Neurologist.
      Now @Hedley LaMarr, it started 22nd of May 2010 & we brought her home on 6th July 2010.Her rehab was started in ICU itself where she stayed for 6 days & the rest of the days in private ward till discharge to watch out for any complications.
      Now @ KatyK, thanx a lot for your warm welcome, We’re in touch with our Neuro, we’ll be seeing him next weekend.
      @ northernguitarguy, is pool therapy really helpfull? But when is the accurate time to go for that?

      Warm Regards


    • August 21, 2010 at 8:10 pm

      Hi Harry

      I wish GBS was a mental thing, I would have thought it away by now.

      Your wife will be ready for the pool anytime she is ready. She will likely need help and may need a life-jacket if her legs are too weak. The water feels nice and the workout is effective.

      GBS recovery is tricky, a balancing act between physio and rest. Too little or too much of either is not ideal. She might enjoy and benefit from some massage therapy, hottub

      I’m sorry about the family probs, I hope you can make up. Take all the support offered by friends.

      Be patient as well. Us GBS’ers can be a cantankerous bunch. We dont mean it, we just hurt a lot.

      Above all else, the power of distraction and anything that eases pain is paramount.


    • Anonymous
      August 22, 2010 at 4:28 am

      I just wanted to support what other people have said and to say that I did hydrotherapy in the pool too. I went to a small therapy pool in a hospital that was set up with a swivel chair that could take someone from a wheel chair into the water. At that time, I was standing on my own (barely), but not walking on my own. The great thing about the water is that it helps support you and takes away the fear of falling, so it is a nice way to begin to stand and walk again. I heard from my physio that for some people it was the only way to get them walking again. If your wife does have the shivers or shakes, this could be just the answer. If you don’t have such a facility, the logistics of this in a normal pool is more challenging and would require help by others to get in and out.

      Good luck!

    • Anonymous
      September 9, 2010 at 12:47 pm

      Thanx to all of you guys for such a warm welcome & replies ! Really appreciate that.

      I want to ask a question to all the members. My son who’s 2yrs old have his Swine Flu vaccination (Injectable not Nasal, according to his Pediatrician) due on 14th of Sept.10. Sha’ll i go further with it or not as I’ve come across several cases of GBS post swine flu vaccination? I’m in great confusion as I’m already suffering a lot due to my wife’s GBS. I cannot take any risk with my only child’s life.

      I asked my wife’s physiotherapist’s husband who’s a doctor that i can do without the swine flu vaccination of my son if i’m having such apprehension in my mind. Moreover we don’t consume any piggery product. But my child’s pediat. says it’s totally safe as now it is injectable vaccine & not nasal one & hence it is non reactive as against the nasal one. What does non reactive apply to, non reactive to what?

      Please help me on this. I’m in a dillema. Sha’ll I go with it or drop it?

      Now about my wife she’s improving. Today she walked without the support of walker, but me & her PT were holding her hands. Then she went down & up 6-7 stairs with holdind the railing of the staircase from one side with her hand & her PT from other side with me keeping a watch from her back that she don’t fell.

      I need a reply regarding Vaccination from all of you guys ASAP.

      with warmest regards


      “May LORD have mercy on all the GBS patients”

    • September 9, 2010 at 1:38 pm

      Hello Harry

      I am dealing with the same issue for my boys. They have been recommended for menactra shots, but Lisa and I are not having it done. What is the likelihood of a meningitis outbreak anyway?

    • Anonymous
      September 9, 2010 at 5:21 pm

      Hello Harry,

      I’m glad to read that your wife is progressing. Being able to walk and take a few steps up stairs is huge! May this be the beginning of the end of her GBS. I wish her continued success……..remember to be patient, this will take time, and savor each small victory.

      As regards your guery about getting a vaccination………..this is one of those times that you could use the wisdom of Soloman. I never received a flu vaccine, and contacted GBS by another avenue. My personal viewpoint would be to err on the side of caution, in other words, don’t get the vaccine. But I am not an expert……I know you must be going through a lot of mental and emotional feelings as you care for both your wife and son. I think you need to evaluate the pros and cons and make that best decision for you and your family. (The one that will allow you to sleep at night). There are many here to support you, please continue to take advantage of this website. Good Luck!

    • Anonymous
      September 19, 2010 at 11:32 am

      I know just where you an your wife are at only the roles were reversed I had GBS.
      When I was released from the hospital I went to a nursing home, which was at frist very good because I had lot’s an lot’s of PT an OT.
      I escaped from there after 2 months I was barley walking with a walker an I couldn’t use my arms well enough to eat. My wife had to feed me. She called me her little bird.
      Be patience with her time is everything
      I’m so much better now, an it’s been just over 2 years an I,m still inproving