susieporsche

Your Replies

  • June 5, 2006 at 5:40 am

    1. Sit in the sun

    2. Go for a swim

    3. Eat and be merry!!

    Suzy

    June 5, 2006 at 5:35 am

    Who washes the car for you? my husband

    What type of music do you like? Tamala Motown

    What food cravings do you have at the moment? Hot Curry

    Suzy

    June 1, 2006 at 8:37 am

    Dear Ali
    How I feel for you my friend. It seems we are both going down the same road, though for me I can at least rest when I want as my children are all grown up. It must be so hard when you have a young family to care for.

    As you know I had GBS in 1968 then some sort of relapse in 2000/2001. My doctor had not idea what was going on so sent me to see a neurologist. He firmly believed in there being a “post gbs syndrome” and said that was what he thought I had. Trouble is though I believed him, I still kept on questioning why this had suddenly happened, and why am I getting no better.
    In the last 6 months the fatigue and pain has got worse, so another trip to the doctors, bloods done and then she said I had fibromyalga. Then she said she wanted to put me antidepressants. So it seems you are going down the same route. Some days are better than others for me, I can always tell the minute I get out of bed how the day will go.

    What I really wish for is to see a neurologist who has experience of long time gbser’s, who like us are having problems many years after intial attack. Like you Ali I have started losing faith in my doctor as she tells me “there is nothing that can be done” and hands me out several scripts for painkillers etc. It would be fantastic to have this post gbs syndrome recognised like the post polio syndrome is. Everything is so much better with a proper title isen’t it? I am so fed up with people telling me “I look so well” when I’m feeling awful, in pain and so tired.

    You mentioned homeopathy, I too have been down that road. Sorry to say I did not feel any better, but maybe it could work for you. Its worth a shot.

    What I’m praying for is one day it will of burnt itself out, and I’ll feel like I did a few years ago, so until then I try and stay focused and positive!!

    If you ever need to chat e-mail me and I’ll give you a call. We have to stick together!!

    Love
    Suzy

    May 17, 2006 at 3:32 pm

    Happy Birthday Dave

    Hope you have a great time, you deserve it.

    From

    Suzy

    May 15, 2006 at 5:42 am

    Hi Ali,

    I’m glad you have brought this subject up, and its certainly is not hogwash.
    I’ll tell you what happened to me.
    Had GBS in 1968 when I was 10, in hospital for just over a year, took 3 years to walk, but remember very little was done then, and I had no treatment.

    In 2001 I had flu, the type that puts you in bed for over a week. I started to have lots of GBS symptoms, weakness, burning, tingling, numbness and terrible fatigue. My doctor had no idea what was wrong, as I could still walk.
    My husband took me in the car many miles to see a neurologist. He performed loads of tests and confirmed I was having a slight relapse.
    When he read my notes he was amazed to find that I had had 4 children. He questioned me about each pregnancy, asking ” did you feel any different etc” I replied that I was fine, had no problems, but did have minor things happening like, my little fingers going numb, and burning on my back. Remember once when my husband was on night duty, and this being my first pregnancy he wanted me to stay the night with his parents. During the evening whilst watching tv I became aware that my back had suddenly started burning. Within minutes it was on fire causing me quite a bit of distress. My mother-in-law phoned the doctor, who came out and examined me. He had no idea what was wrong and told me to have a cool bath. The next morning I was fine. I have to confess I did have little episodes like this during my other 3 pregnancies.
    The neurologist told me that I was very lucky as a pregnancy COULD of brought on a relapse. Paul and I discussed this on the way home and I told him that even if I knew this at the time, I would still of taken the chance. You have to be realistic about this, as we know from these boards, so many gbser’s go onto have trouble free pregnancies, and healthy babies. Everything in life is a risk, and if you worried about everything you would not get out nof bed in the mornings.

    By the way, he went onto saying he believed there is a “post gbs syndrome” that can effect people who had gbs many years ago, and suddenly find themselves having problems. I for one believe this could be the case, but that’s another story…………..

    Hope this helps

    Suzy

    May 13, 2006 at 1:27 pm

    Dear David,

    I hope you have a lovely birthday surounded by your wonderful family.

    I pray you are feeling better, and we all hope to see you post soon, as you are greatly missed.

    Love from
    Suzy (your friend from Dorset)

    May 9, 2006 at 4:30 pm

    Hi Guys,

    Its so good to be back, how I have missed you all.
    Thank-you Brandy for contacting me.

    I have Doc David’s e-mail address. Lets pray that he is soon back with us.

    Marge great to see you here posting my friend. Gene, how I have missed you, also Kassandra, Jethro and everybody else!

    We are back in Wales at the moment, spending as much time as possible with the family.

    Looking forward to catching up with you all.

    Love
    Suzy