Your Replies

  • May 2, 2017 at 4:03 pm

    Hi Jim Thanks very much for the info you have given me. I will read up on your suggestions as to where to read for me to get an under standing of everything. I am currently living in South Africa. I suppose this won’t have bearing on anything, thought I would mention it. I appreciate your effort in helping me. Thank you very much but I will still follow up on this site of yours. I will mention this to my Specialists.

    May 2, 2017 at 12:39 pm

    Hi I am Rose and I have Rheumatoid Arthritis, Osteo Arthritis and Opelna Arthritis for the past 14years. I was diagnosed with Gillian Barrs Syndrome about 2 years ago. I have monthly infusions for my RA. I have loads of pills which I take. I am also taking strong medication for PAIN. I have a good Rheumatoid Specialist who is very good. I have a lot of pain and my one leg from the knee down is dead and now it has started on my other foot. In fairness I must tell you that I have had two major back operations and a screw in my right hip. My right leg has become shorter and smaller than the left leg and my foot is smaller than the other which makes it difficult for shoes. I cannot wear a heel as my ankles are not strong. I can’t hold a big mug of coffee as it will fall straight through my fingers. I can’t make a fist in both hands due to my arthritis. When I complain about pain and things get worse or flare up my specialist says that he will talk to my Nureo as they work together and know each other very well. I like my Neuro Specialist who takes no nonsense which I like. I have full blood tests every month. But I think I will have to go back for more fluid drawn from my spine again to see how my GBS is doing? For my GBS I have had Polygam and dialysis Is there any other way to test again. I am so very very tired of hospitals. I have a port in my chest where the infusions are connected because my veins started to collapse. Its my second one. It has to be renewed every 2 to 3 years. Is there any one out there that can give me some advise, any advise. I am at my wits end. I get irritated very quickly and my temper is not that great either. I feel ashamed and I use a frame at home when I need it on a bad day but my balance is not good at all. When I go to the shops once a week I use a walker to get me around. When I get home I am so tired I fall asleep and I have hardly done nothing. My family are not really there for me for support. My husband has a short fuse and does not understand anything. He says I complain too much. TV is my life. Looks like I am not having a good day either as I am complaining again but better to you. Please can some one give me advise or any good ideas. Please remember my hands are buckle and bent. I can’t hold things as my fingers are not strong and I am only 62 years old. I feel helpless!!! I am on the group for RA as well. So I do chat there but I need to know about my GBS. What is going to happen to me. Its all quite scarey for me because I don’t know which parts belong to what or where. Very confused. Pleasse help!

    June 11, 2016 at 10:12 am

    @Angela, Thanks so much for taking the time to read my message and reply again. Not many people do so it really means a lot. I will do my best and hang in! There’s no other way hey! xx

    June 9, 2016 at 5:11 pm

    Hi Angie, thanks so much for writing to me. Yes on both questions. I take Mylan – Alprazo 1m x2 to help me relax and Dopaquel 25mg x2 sleep. Trepline 25mg at night. I still don’t always sleep sometimes I end up taking another Alprazo to relax me more. I have also had a fare share of none believers in my family and basically no support up until now. I am too ashamed to say to anyone that I am not happy and no one helps me. My husband as it is says I moan too much. It really hurts…. Thanks for sharing xx

    June 9, 2016 at 11:12 am

    O’ Dear I don’t know if I am in the correct place. But I am diagnosed with GBS but I don’t know if it comes with AMAN……. I was diagnosed over a year ago where I had a lumbar injection to get the fluid from my spine to make sure. I do have Rumatoid Arthritis and Osteoarithis and Osteopenia Arthritis and now GBS. I seem to have a family hanging on me. I have had two major back operations. My one leg from the knee down is numb. Battling with my toes. Now my other leg is getting all those tingling feelings but the pain takes my breath away. I have had Polygam and I have had dialysis. The pains are increasing and so is all the tingling. I am battling with my hands, hip and legs. Nothing has been explained to me at all. Yea! like I know what GBS is. All the doctor told me was that one in 100 000 00 gets it and I am in that bracket. I get real depressed about the whole thing as I am on heavy medication and go to hospital every month for an actemera infusion for my RA. I really know nothing about this disease. Can anyone here help me out? Sorry I should have started with my name excetera. My name is Rose 63 years old. I can’t work and wish I could. I live in Pinetown, Durban RSA. (Africa) Can anyone send me to the correct group but I do think I belong here!! Any help is really appreciated. Thanks xx

    September 12, 2015 at 2:11 pm

    Thanks so much ? Mike!! Will let you guys know when I know. The only thing I am certain of is my leg going dead. Take care and bless you xxx

    September 12, 2015 at 12:49 pm

    Hi Mike.
    Thanks sooooo much for replying. Everyone I ask know nothing about GBS. The doctor has not explained anything to me only that I have to wait for the polygam to kick in. He said once the meds are in my system it takes 2 to 3 months to take effect because it’s working in my system all the time. My legs and knee’s are killing me and the top of my legs are very swollen. If I stand up it kills me and my knees can’t take it. I went to physico and they told me that it is not my knees it is my hips. I am so co fused. I can’t seem to separate the Ra between GBS

    September 12, 2015 at 7:39 am

    Hi I am Rose and have recently been diagnosed with GBS. I am currently on medication for Rumatiod Arthritis for the past 10 years and Ostreo Arthritis. I am having major problems with my legs hips and pelvis. The pain never leaves me. My right leg is partially numb around my ankle and foot. It’s so irritating!! And feels like I am walking on marbles. I have sensation under up part of my foot. I was in hospital where I was on the drp of polygam for a week. I don’t understand what is happening to me. I am also 60 years old and scared. Please can someone enlighten me on this!! Yes I also have tummy pains but not major but me legs I am so worried about. Thanks so.