sensory gbs! miami fla

    • Anonymous
      September 17, 2008 at 9:16 am

      Just Was Wondering If Any One In Miami Fla Has This Rare Form Of Gbs, My Father Was Diagnosed Jan 07, Life Was Changed For All Of Us But I Will Not Give Up On Him Although I Feel He Is And It Has Me All Tore Up Inside, Just Goes To Show You , You Never Know What Is Around The Corner That Can Totally Devastate Life. Does Anyone Know About Any Place Where Gbs Pt Get Together And Discuss Their Issues? Dad Is Going Thru A Real Depression And That Is Something That I Need To Find A Natural Way Out Of It. I Know Everyone Is Different But How Long Does This Gbs Last For? Anything Besides Vitamin B Complex That May Help The Myelin Sheath Regenerate Faster? Anyone Heard About 2% Zylocaine Helping Out With Nerve Endings And Regeneration Of Nerve Sheath? I Am A C.t. Tech (catscan Technologist) So I Am In The Medical Field And I Am Surprised About How Many People Have No Clue About Gbs?!@! I Need Any Help Advise Anything, I Feel So Desperate To Help Him But I Feel Like If My Hands Are Tied And Its Killing Me Inside! Help

    • Anonymous
      September 17, 2008 at 9:40 am

      Hi! Welcome to the forum. I was diag. with GBS in 4/07 & in 2/08 diag. with acute sensory neuronopathy. I am not in Flordia but some areas do have local support groups. I would suggest that your father come to this web site. There are many, many people here that can help your father with his depression by just being able to vent 🙂
      I have actively been on the site since July. But it does make a difference when you are able to read others posts & realize there are many others who are facing the same things you are. The friends I have met here are very supportive & encouraging.
      As for the disease & how long it takes for recovery is the unknown, thats the bummer.:confused:
      You will also find many different treatment plans, I take IVIg every 3 weeks & it helps.
      Is your father on Medication for depression/anxiety?
      How old is your father?
      I am 53.
      Your father could benifit from this forum & the information GBS/CIDP provides invaluable information.
      Talk to your father & encourage him to come to our GBS family:)

      If you have any other questions just let me know.
      Good Luck & God Bless

    • Anonymous
      September 17, 2008 at 5:24 pm

      Hi JXS! Get your father in this forum anyway you can! He will get so much support here and meet some wonderful people and they will help him get better in so many ways. You may want to contact the foundation here also and see if they have a support group in your area or close by. I’m pretty sure they have a list of Liasons that can help. Ali in here helped me find one in NC. So I am pretty sure they also have one in Florida! But this site has some wonderful folks in here from all over and they have been so helpful to me! It might even lift his spirits too knowing that he is not alone. I wish your father my best and hope to see him recovering soon! Cyber hugs heading your way!

    • Anonymous
      September 17, 2008 at 8:40 pm

      We are so happy you have found us and a home for your dad. I feel your worry and stress. You are normal as we all have walked that road. You wanted to find a doctor that knows a cure for GBS. There are a few,very few. The more you read the storys here you will start to see we in most cases know more than 60 % of the neuroligist.
      I am from Miami and left in 83. You have the U of M there a great teaching university and they have some good doctors,
      Now you mention your dad is giveing up. Well at one time or another we all felt like giveing up. One of the best meds you and your family and friends can give your dad is love and speak postive and pray for his healing . It may be slow but he will heal.Yes he will heal and he needs to know this.
      When you visit him look for progress. like yesterday he could not move say a finger and today he can. If he wants to do something on his own let him. do not patronize him. Encourage him to look for improvement every day.
      Do your best to let everyone know to be postive around him. being negitive will set him back. You have a family now and so does your family. I went from crawling to walking in 4 months. Do not allow doctors to fill your head full of trash when you know yourself they don’t know what they are talking about.
      Any questions you may have you will find someone of our family has the correct answer. If you want to unload your frustration do it. We all have from one time or another. Again you dad will be ok. and it may take a little time but he will be his self again. May Gods blessings be with you and your family and your dad (Steve) PS. I got my GBS from the flu shot. I tell everyone not to take it. It only will protect you from last years flu.I asked my doctor if she took the flu shot and she looked at me as if I was crazy.

    • Anonymous
      September 18, 2008 at 5:38 am

      I’m sorry your Dad is having such a bad time with his illness. I have found this site invaluable as it has helped me understand my illness a lot better and that I am not alone – So this site has basically been my support group (even though we are all spread around the world!) I have had sensory CIDP (which my Neuro told me was quite rare) for 5 or so years now, my last attack was a few years ago now. Mine is more chronic with relapses. I have found though, that I have gained improvement since my last attack and can now walk. I always find some days are worse than others and I always feel worse when I overdo things or am stressed. My balance was badly affected and a course of balance classes run at a local rehabilitation hospital really helped me.
      Good luck

    • Anonymous
      September 18, 2008 at 10:50 am

      Hi jxs, Welcome to The Family and Your Family is Welcome as well! Is your Dad on a pain med? Like neurontin, lyrica or an anti-depressant-the latter can work on both the pain and depression. Sensory gbs is alittle different in recovery than the motor gbs, it takes along time if ever for the skin nerves to come back. Its not really all that bad if you think about it, but being in florida i would watch your dad in the sun for any length of time. I can’t feel temps and have burnt myself a couple times.:o There is recovery in some parts more than other parts though. For instance I can feel more on my neck and parts of my head then i can on my arms or legs. But i also have motor involvement, so i’m not sure if its involved in somethings. Your dad will recover in time, it is different for each of us. The important thing is to stay positive as this also helps in the recovery. Sorry i can’t help with finding a good dr in florida but if you are ever in michigan there is a good neuro at u of michigan.
      As far as your dad’s giving up on things, that is part of the grieving process, it natural, but not for too long. There are 5 or 6 stages in the process. The next stage might be a renewed attitude towards life and this syndrome. He might need a friendly nudge to help him get through these stages, as they are hard to do by oneself. Support is really important in getting him through life. Just don’t over do it, independance is the next step in the support ladder. Let him try it on his own first, if you se him struggling to the point of exhaustion or madness then step in and offer your help-most of us don’t like to ask for help from others-we are a strongwilled group!:) He made it this far in his recovery he will make it farther tomorrow! You will also find that not only do people not understand or never heard of gbs/cidp, but that many drs don’t know what they need to know about gbs/cidp. matter of fact most drs are pretty negative about it.
      Print out the information on this site that you think would pertain to your dad. Reading it might be encouraging to him to know he is not fighting this alone. Others are going through the same things. We all have/are developing our own ways of dealing with our new normal lives, maybe he can get a few tips that he can use to get him living again. Please know we are here for you, your family and your Dad! Ask any questions or just vent when needed. Take care!

    • Anonymous
      September 19, 2008 at 1:25 pm

      Dear JXS,

      As others have said, please try to get your dad on this site. It has been a life saver for me for many years. (This website crashed in 2006, so that is why you see a lot of members joining then. But a lot of us have been here 6+ years.)

      This illness can cause a very isolating depression – because only a few people have a clue. Your father is very lucky he has you to understand. That is priceless! I’ve got other issues in my life now, but am on major doses of antidepression meds. If one doesn’t work, he may have to try another one.

      My last diagnosis was sensory peripheral neuropathy. My reflexes have never returned so my balance is very tricky most of the time. Also, do have him be very careful with heat and hot water.

    • Anonymous
      September 19, 2008 at 2:18 pm

      I have the same diag. as you. Do you walk by yourself or with walker. etc? I am not dealing very well with this whole thing. I would love to hear your story if you have time.:)

    • Anonymous
      September 19, 2008 at 2:58 pm

      I was told many years ago when I had GBS that it takes about one month to heal one inch of nerve. I am tall and my first thought was OMG. What they say today is that everyone is different and that age, the extent of nerve damage and overall health of the patient will dictate improvement. One day your father, like so many of us have, will come to the conclusion that there is not a darn thing that can be done about this and you have to accept and adapt to it. Just love him and be there for him, and help him to see what is good in his life.

    • Anonymous
      September 22, 2008 at 1:34 pm

      Cathy C. – Well, its been 11 years for me and no reflexes. I believe they never will at this point and I don’t think this is that uncommon. I do walk on my own, but I walk like a drunk. I was at a concert the other and had a sweet friend let me hold on to her while we made it slowly through the crowd. You can only imagine how I barely walked after a couple of beers 😮 I have missed a lot of events and parties over the years, but am finally accepting it and trying to do only what I can. My family has been the hardest as they don’t think there is anything wrong with me other than getting older. So be prepared for a lot of people say ‘but you look great’ and have an almost impossible time understanding what you are going through.

      Good luck!