a hello

    • Anonymous
      May 19, 2008 at 4:34 am

      I haven’t officially been diagnosed yet(dx Plausible GBS vs MS), currently i am 6 days in. went in to see the doctor Tuesday, May 13 2008 and was in the hospital within 2-3 hours. i got outpatiented on Friday and at the moment im hoping i dont need to go back. my symptoms are pretty mild still. no reflexes in legs and some wobblyness, and the “always asleep” hands that are about as easy to type with as a rubber chicken^^.

      reading the stories and posts here has made me feel a good bit better about my situation. i look forward to a quick (hopefullly)recovery and if not, a better time of it with your support. I am almost always lighthearted. I try to keep a positive outlook. I am always happy to meet someone new^^ that being said…

      Hello Hola 今日は

    • Anonymous
      May 19, 2008 at 7:38 am

      Good morning Hola.
      I had the same symptoms and it was in my legs. I found ot I had GBS. I also waited 3-5 weeks because I felt the hospital would really do nothing. Then the day came I fell and could not walk. I strongley suggest you find a doctor that knows and cares enough to make sure they know what you have NOW. from your letter they are guessing and trust me only a neuroligist can give you the answer. Do you live close to a university hospital. Do not accept what they are telling you demand to know what you have. do NOT wait. My prayers and blessings are with you (Steve)

    • Anonymous
      May 19, 2008 at 4:31 pm

      i guess i should more accurately describe what they did at the hospital. I have had far more blood than i prefer drawn out of me. They put two bags of omni-globulin in me. They did an electrical test of some sorts on my legs and arms, and my personally least favorite thing: the wonderful lumbar puncture. i spoke with i think 8 doctors in the hospital 2 were neurologists. when i was discharged they were still waiting for some tests to come back. I hope that is the reason for the odd diagnoses.

      i will take your advise though and talk with my neurologist tomorrow, and i will be a bit more firm about getting some conclusive information.

      thank you for the advice and prayers^^ i will take it to heart.

    • May 19, 2008 at 4:37 pm

      Hi Joe,
      Hope you get your results soon. I would ask about a cidp dx, typically gbs patients are more severe and over a shorter period of time. Just a thought. Has the ivig had an effect on your symptoms? Good luck and keep us posted.
      Dawn Kevies mom

    • Anonymous
      May 19, 2008 at 6:46 pm

      as far as the ivig it seemed to halt the progression but that is all. it has gotten a tad worse in the hands but better in the legs.

    • Anonymous
      May 21, 2008 at 1:48 am

      good news it looks like the tests came back. my pcp says i didn’t have oligoclonal bands in the LP so its not ms^^. Still waiting on a an official dx from the neurologists but that appointment is coming soon.

    • Anonymous
      May 21, 2008 at 11:33 am

      Hi Joe.
      Have you had IVIG yet. time is very precious at this time. from what you are describeing you have GBS and IVIG is the main treatment. 5 bags 1 per night or day for 5 days. Start looking for improvement every day. no matter how small. Do not let your nuroligist B/S you as so many have to us. Have you signed up with the GBS foundation. if not DO. What part of the country do you live in. This will let us know and you may have someone very close that can suggest a doctor that knows about GBS. Also Dawn is very knowledgeable and others can give you suggestions. One thing we have found out is there are about 40% doctors out there that could not tell you if you have hair on your head. and they are suppose to know but do not care.If you have concern over something get an answer NOW not 2-8 weeks later. My prayers are with you (Steve)

    • Anonymous
      May 22, 2008 at 3:19 am

      i live in Kansas City Missouri so middle of the midwest. I had 2 bags of IVIG not 5 ; ; i hope that was enough^^ i haven’t signed up with the foundation cause i’m still officially pending a dx. that and i guess deep down i’m still hoping this is all in my head and i’ll just snap out of it… ah wish-full thinking. my legs have gotten alot better. my hands and arms well im working on them.

    • Anonymous
      May 22, 2008 at 12:06 pm

      [QUOTE=thejoesmith]I haven’t officially been diagnosed yet(dx Plausible GBS vs MS), currently i am 6 days in. went in to see the doctor Tuesday, May 13 2008 and was in the hospital within 2-3 hours[/QUOTE]


      See also my ‘hello world’ thread coming soon: i got the first symptoms (tingling hands) on May 11th. I was lucky(!) to get beginning facial paralysis only 3 days later, panicked, and went to the medic station at midnight instead of going to bed and wait till the next morning. By 1.30 AM i was hospitalized, by 4 PM i was diagnosed and had already received by first plasma treatment.

      Tomorrow, only 12 days after the very first symptoms, i’ll be out of the hospital. That is extremely fast, only 3 days ago the estimate was i’d have to stay 2-4 weeks longer, but the attack stopped and i started the healing before any serious damage was done (i can still move half my face and walk like a 110 year old).

      I can offer two possible explainations for my quick recovery:

      1) a lot of people were praying for me
      2) i got treatment very early, was on the plasma-machine less than 14 hours after arriving in the hospital

      now, if you got MS, you can go home. BUT IF THERE IS A CHANCE that you GBS, get your ass back to the hospital – (or preferably to another hospital with a real neurologist) and get a diagnosis. EVERY DAY YOU WAIT is going to cost you a lot of time getting well.

      *what you want is an analysis of your spinal fluid.
      – High protein count and nothing else = GBS;
      – high protein count and thingamajing (cell count?) = MS

      good luck in any case –

    • Anonymous
      May 22, 2008 at 3:49 pm

      Joe listen to what is being told to you. this is not the time to play doctor. LISTEN to Andrew. you do not have time to sit and wait for a doctor to make up his mind what you have. Time is not in your favor at the moment. and it doesn’t take 10 doctors to find out what you have. I am praying for you and that you will find a neuroligist that knows what GBS is (Steve) PS–have you had the nerve test yet ???????