New & hope you can give me some Info.

    • Anonymous
      August 13, 2008 at 5:46 pm

      Hi All,

      In October 2007, I had been tripping, knocking things over and dropping things. About a week after this was going on, I got very sick and went to doctor and he said I had pneumonia/flu, prescribed an antibiotic and sent me home. About two weeks or so after that, I felt weak and went to lay down. My husband tried to give me some water, but I could not lift my arms, then my legs, and couldn’t turn my head.

      Called 911, and they put me in Intensive Care. A neurologist did a Spinal Tap within hours after arriving at the hospital and of course all the other tests, MRIs, X-Rays, Infectious Diseases, Lyme Disease, EMG, everything they could do … they did. They came around every hour or so to do the breathing treatments, so I did OK with that so no respirator was needed.

      The tests were all normal, the Spinal Tap came back with no elevated protein.
      After being in hospital 2 weeks I left with a walker and struggling to use that. The Neurologist and other doctors had no infinitive diagnosis. He did mention it was similar to Guillain-Barre, and there was a treatment for that I could do, but the protein was not elevated when the spinal tap was done.

      So then they just concluded that it was probably Conversion Disorder. The reason they came up with that was because I just moved to area and figured I must be stressed over the move. Well because of my husband’s career, we have moved 8 times in 20 years…so believe me the stress was not a factor this time as it was probably the best move we had and the least stressful.

      So being new to the area and just wanting to get out of the hospital so bad, I didn’t get a second opinion or get another Doctor afterwards. About a week after I got home I got very weak and the paralysis came back for maybe 3 hours. I called the Doctor, but she seemed not concerned, just told me if it continues the next day or so, call her and make an appointment.

      I began to get stronger each day, each week and would say around June I felt as I did before all this happened. I did go to Physical Therapy until I got stronger and could use a cane. I never did seek out another neurologist or went to any doctors after coming home.

      I do get really fatigued and on a couple of occasions my legs and arms got so heavy and numb, then after a hour would be stronger again.
      After reading all about Guillain-Barre, here and on the net, I really feel like everything seems to point to it or something closely related to Guillain Barre, especially since I had the flu 2 weeks before. I also get tingling in my arms, like needles sticking me and yesterday my body just ached all over.

      If the results of the Spinal Tap show the protein is not elevated does that absolutely rule out Guillain Barre? I had read that the Spinal Tap is best to be done a day or two into the paralysis. So I’m confused about that and if he had done it the next day, if the protein would then be elevated.

      I see that most of you who have been diagnosed with Guillain-Barre are doing some kind of a treatment. I worry that I might be needing treatments and I have delayed in doing that by not seeking out other medical help with this.

      Where do I start now? I don’t know if I should just ignore the fatigue and deal with it or what. I know something caused the paralysis and I’m sure it was not from stress.

      I have no family, other than my husband and 2 grown kids who live in another state and really no friends to talk with since I just moved here. I was hoping someone on here could give me their advice or opinions. I just want to do the right thing for my health, but at the same time I feel like I will go thru the same thing that happened at the hospital, no answers and being frustrated dealing with doctors.

      I would very much appreciate it if anyone has some advice or maybe what they would do in my situation. I just feel so helpless right now.

      Thank you so much for reading my post and I apologize for so long.


    • Anonymous
      August 13, 2008 at 6:32 pm

      Trish ~ welcome to our family 🙂 Altho, I am sorry that you have need of being here. The most important thing is to keep researching and asking questions. Yes, a spinal tap can give a false negative. I believe that it is never “conclusive” of GBS. I am one of those who had the flu and 2 weeks later, wham 😮 This was before treatment was available in my part of the country.

      If you could let us know what state or city you are from you could possibly be put in touch with a liaison from the Foundation. Have you requested the info packet from the Foundation?

      By the way, you are not the first to be given a diagnosis of “conversion disorder” (an easy way out when “they” don’t know 😡 ).

      Others will be along shortly to welcome you. Keep asking questions and good luck.

    • Anonymous
      August 13, 2008 at 6:43 pm

      Hi Trish- Welcome. I too was told I had a “nerve problem” and to go home and deal with my stress. They never used the words conversion disorder but that was what they had implied. I got weak like you and finally collapsed and ended up at the hospital. I was intubated and on the respirator for a few weeks.

      I would go back to the doctor. There are plasma pharesis treatments and IVIG that can be done. I am not sure if you would need that at this point. Perhaps others can speak to that. It is normal though to feel tired and weak for up to 2 years and sometimes more after having GBS. It took me about 2 years to get back most of what I lost to GBS. I never did get back my full strength and have since had weakness in the great muscles of the body. Keep pushing for answers. Doln’t accept a “We don’t know.”

      Good luck in your research and quest for answers. Keep us posted.

    • Anonymous
      August 13, 2008 at 6:46 pm

      Hello Trish ,and welcome. I had GBS that started in oct 07. Mine presented with rapid numbnes and tingling pain. First ,I woke up one day with numb fingers in both hands, and toes in both feet. Within three days my legs and arms were gone. Then a couple days later my torso up to my neck.was tingly numb with great pain. It stoped with the top of my head numb above my right eye,and the shoulders down.It came fast and furryus. Wednsday my symptoms started,the following saturday I was at the hospital,Uof M, That monday they started the IVIG. All of us are different and there are so many different ways the GBS presents itself.The nuro thought i had a garden varriety of GBS. The first hospital I went to on friday (Beaumont) did mri,catscan and bunch of blood work.They had a good reputation and still couldnt figure what I had. When I got out of bed that saturday I nearly fell flat on my face. Thats when my wife insisted I go to U of M.They figured out what was wrong and started treatment right away.Today I am back to work with achey numb feet. I was in such bad shape that there is no way I could have stayed home and function.I was hospitalized for 5 weeks. 4 weeks in rehab.
      Did you get a nerve cunduction test? That will tell them if the signals arent getting to its proper speed and then showing demylanation. I never got week and numb then hours later strength and normalness. I hoprethat has helped you in some way

    • Anonymous
      August 14, 2008 at 4:31 am

      I think I would see my regular doctor and have them fax a referral over to an MDA/ALS Clinic. Just by my own experiences of having bad nerve damage ad attacks on my nervous system, the Neurologist in my areas don’t have the proper testing or facilities in my area. Anything to do with normal stuff they do okay with, but rare disorders may require an MDA Specialist. Should be an area in that state that has a specialist. Just got my referral in today at Duke! Hope they can find out what is going on and get you treated soon! Welcome Trish!

    • Anonymous
      August 14, 2008 at 9:20 am

      Thanks for sharing. I also am a newby to the forum. I was diag. with GBS in April 2007. I receive IVIg every 3 weeks at this time. I still have weakness, numbness & tingling to fingers and toes. IJ walk with a rollator. Initially my LP showed a normal high protein level. But after they ruled everything else out. Diag. GBS, I also have absent reflexes. There seems to be so much to look for. Hang in there and get better. If I can help with anything let me know.

    • Anonymous
      August 14, 2008 at 10:31 am

      Thanks to all that gave me a “warm welcome”! And I so appreciate that you took the time to share your opinions and personal experiences. Each one helps and gives me more insight about GBS and information that can be important in what decisions I should make.

      I hope that doctors today are getting more educated about GBS so others don’t have to go thru the frustrations that some of us have experienced and feel like just giving up and living with it.

      I will request the packet that was mentioned and thank you for letting me know of that. I will also continue to monitor the posts to learn as much as I can.

      I wish you all the best in your journey with GBS.


    • Anonymous
      August 14, 2008 at 2:56 pm

      Hi Trish,

      Keep a positive attitude. We are all here to listen and help as much as possible. Take care of yourself and take things one little step at a time. Welcome to the family.