No Hope-thanks to GBS

    • Anonymous
      December 13, 2010 at 2:14 pm

      I have been suffering with symptoms of GBS since Sept. 2009. I still have blurred vision, pain in the back of my head continuously, shortness of breath, irregular heart beats, neck pain, and tingling pain in arms & leg off & on.
      I was a healthy, 43 year old woman prior, lost my fiance to cancer in 2008.
      My employer fired me for using Aflac disability in Oct. 2009. I have had to limit my medical care because I have no money. And two months ago, I had to give up my independence because of this illness. Which was a blow I cannot accept & has destroyed all hope for me & my future.

      Lisa

    • Anonymous
      December 13, 2010 at 4:18 pm

      Lisa, that really stinks. I would urge you to seek legal advice on your employment termination. I am not a lawyer, but I do not believe, under the Americans with Disabilities Act, that you can be fired because of disability.

      Please check this out…preferably with an attorney who specializes in disability law.

      Good luck. Sorry I can’t help with the referral. I live on the east coast.

      Sharon

    • Anonymous
      December 14, 2010 at 11:24 am

      Lisa,

      I am sorry to hear this. I had “mild GBS” a year ago, and still have the symptoms that you mention. I have been told that I have fibromyalgia or low serotonin disorder now. You might want to google these and see if it correlates. If so, seek out a doctor that specializes in fibromyalgia. The doctor feels that I had GBS, but that it triggered and ongoing “fight or flight” syndrome that my body cannot shut off. Good luck! I too am young (39) with no prior major problems. It sucks, but you have to persevere!!

      Jessica

    • Anonymous
      December 14, 2010 at 7:01 pm

      So do you still have vision problems like blurred vision?
      Has any doctor told you how long it can last? Or how to improve it?

      Thanks…Lisa

    • Anonymous
      December 21, 2010 at 7:16 pm

      Lisa,

      My prayers go out to you, girl. I just posted my story (short version) on the Miller-Fisher forum today. Please read … the vision component was the outstanding residual for me, and I received treatment for this when things did not improve. About your blurred vision … let’s hear some details. Is it virtually the same as the onset? Double images, or more of a wavy sensation? Any balance/vestibular issues?

      I was a 49 yr old elementary school teacher at the time, very athletic, surfed after work 3x/week, hiked, played piano, etc. Then, boom … forced pause. Turned my world upsidedown! I know you can relate.

      I’m sure others, including myself, would love to help navigate you through this. Remember: things are not as they seem.

      Attentively,
      Norm

    • Anonymous
      December 28, 2010 at 2:51 pm

      [QUOTE=LisaGBS909]I have been suffering with symptoms of GBS since Sept. 2009. I still have blurred vision, pain in the back of my head continuously, shortness of breath, irregular heart beats, neck pain, and tingling pain in arms & leg off & on.
      I was a healthy, 43 year old woman prior, lost my fiance to cancer in 2008.
      My employer fired me for using Aflac disability in Oct. 2009. I have had to limit my medical care because I have no money. And two months ago, I had to give up my independence because of this illness. Which was a blow I cannot accept & has destroyed all hope for me & my future.

      Lisa[/QUOTE]
      Lisa,
      I am on this site because I had GBS years ago. I registered in hopes of contacting you. I think you need to explore another possible diagnosis. Your symptoms are very similar to those my wife has had along with hearing loss and a choking sensation. She did/does not have GBS. What she did have was a Chiari malformation which is an abnormality that strikes primarily women in their 4th to 5th decade of life (like you and my wife). Basically one’s cerebellum puts pressure on the brain stem. It is correctable. The fact that you have had GBS could have exacerbated the situation as muscle strength has a little to do with it. I am no doctor, but I would implore you not to give up and to seek additional diagnosis/treatment. I have no idea where you live but we needed to travel to major cities to get help. Rural doctors just don’t see enough of these issues.
      Clint

    • Anonymous
      December 28, 2010 at 9:17 pm

      [QUOTE=LisaGBS909]I have been suffering with symptoms of GBS since Sept. 2009. I still have blurred vision, pain in the back of my head continuously, shortness of breath, irregular heart beats, neck pain, and tingling pain in arms & leg off & on.
      I was a healthy, 43 year old woman prior, lost my fiance to cancer in 2008.
      My employer fired me for using Aflac disability in Oct. 2009. I have had to limit my medical care because I have no money. And two months ago, I had to give up my independence because of this illness. Which was a blow I cannot accept & has destroyed all hope for me & my future.

      Lisa[/QUOTE]

      Dear Lisa,
      I am sorry for all of the losses you have experienced, and hope and believe that you will also experience healing in time. Do not give up hope. This illness takes much time for the healing to happen, and things will get better with your body in time. You are going through some very hard and dark times right now, but you must believe that there are good things to be thankful for too, even in this day.

      I’ve been ill for over 3 years, and the symptoms are so degenerative that a person can lose perspective mentally as well as physically, but I can tell you that in the last year I’ve noticed real improvement in my body and brain. I can bend from the knees again, I can move my hands quickly, my headaches have almost stopped completely, my vision has improved as long as I don’t overdo and strain my eyesight, my legs and hands are mostly comfortable now, instead of the fiery tingling pain, though without as much sensation as pre-GBS. Much of the pain is gone, the cramping is only occasional now. SO IT DOES GET BETTER.

      But you have to understand that it takes TIME. Be patient, and train yourself to count your blessings and be thankful for any and every thing you still have to be grateful for. It helps, and yes, sometimes you’re going to want to vent because this condition is the pits, so do that, but afterwards keep on keeping on. You will get better. Keep a notebook of your progress from month to month, and you’ll see the improvements you’ve made. Don’t give up hope for your future; stuff happens in life, and that’s a guarantee, but there’s also good stuff that happens, and you can and will be part of that too.
      God Bless!

    • Anonymous
      December 29, 2010 at 2:02 am

      Lisa, I definitely identify with the “Hopelessness”! I been on this very personal journey for 16 years this coming January 2011. I have continued improving since then – a lot of slow times. I had no help from the medical profession (because I was a woman who didn’t know how to live life! give her a tanquilizer!) I live inspite of them! I learned to walk again after only crawling. I persued every holistic avenue which came my way. I simply refused to believe that here was no hope. And I still refuse to believe that I won’t have other improvements to follow. Keep reaching! there is more out there for you! Hugs for you!

    • Anonymous
      December 31, 2010 at 11:52 am

      I am so sorry you feel hopeless. I, too, have felt hopeless from GBS. In those times, I lean on others for as much support as I need. Do you have family nearby? A close friend?

      When I just can’t seem to endure another day, I cry in the shower to get it all out, take out my Bible and ask the Lord to lead me to the right page, then I “fake it until I make it”. That’s all I can think to do.

      Please email me if you’d like! I am 32, an elementary school teacher and mommy to two small children, and in my 18th month of GBS.

    • Anonymous
      December 31, 2010 at 1:26 pm

      [QUOTE=LisaGBS909]I have been suffering with symptoms of GBS since Sept. 2009. I still have blurred vision, pain in the back of my head continuously, shortness of breath, irregular heart beats, neck pain, and tingling pain in arms & leg off & on.
      I was a healthy, 43 year old woman prior, lost my fiance to cancer in 2008.
      My employer fired me for using Aflac disability in Oct. 2009. I have had to limit my medical care because I have no money. And two months ago, I had to give up my independence because of this illness. Which was a blow I cannot accept & has destroyed all hope for me & my future.

      Lisa[/QUOTE]
      Time is all I can say Lisa, I too had my life brought to a haught, it seems after the 1st year progress has stopped but it really hasn’t. Why just the other day I noticed I could rest my hands on the table and raise my fingers, when last year I could only raise 1. I don’t know when I was able to raise them, it just dawned on me.
      Same with the blurred vision I had to use mag glasses just to read now I find myself using them a whole lot less.
      One thing is you will find all this out as time goes on.
      Hang in there

    • Anonymous
      December 31, 2010 at 1:52 pm

      Thanks for all your nice replies to my thread. I signed up for the forum, because I was hoping to get a referral for a GBS family practice doctor in my area. Without a doctor on your side being approved for disability is impossible.
      I am so down – I don’t know if I would even want to share with someone how I REALLY feel.
      I feel like God has forsaken me for the last 3 years.
      I was alone through the first year of this illness. And now I am living with my mother & extended family members ridicule me for it. Even though I was able to support myself with no job or spouse for 9 months. I worked & was financially independent for 18 years & one illness can take it all away. NO ONE should have to give up there home because they are ill-like I did! Because now I will never be able to relax & rest like I should be doing to speed my recovery.
      So many people have been so mean to me since I have been ill. When I read other people’s posts about having support – I don’t know what that would be like besides my Mother & sister.

    • Anonymous
      December 31, 2010 at 2:50 pm

      Please don’t feel as though you can’t share… Nobody can truly understand how you feel, but many of us are/were where you are. This has turned our family upside down – my parents have been at my home 10-12 hours a day since I came home 14 months ago. If I don’t look at the bright side, I’d go insane. I signed up for the forum to look for added support and someone who understands (like YOU)! Let’s make a deal – I’ll be honest if you do the same. Together, we’ll create our new selves.:)