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Old 11-10-2010, 09:13 PM   #1
Join Date: Oct 2010
Location: Chicago, IL, USA
Posts: 51
Altari HB UserAltari HB User
Guillain-Barre syndrome?

I posted in the brain tumor forum a few days ago, when we were certain that was Grandma's problem. In the interim, we've been told the tumor is not, in fact, the issue and that she has Alzheimer's. While I know that diagnosis has been coming because she's 83, it's a big ol' yeah right moment. My grandmother does NOT has Alzheimer's. Soooo we've been searching for what fits her symptoms and it's down to GBS.

Here's the run down.
Over the course of 4 hours, she experienced ascending paralysis. It began in her legs, with some numbness and tingling, progressed to an inability to bear weight, then move them. At the E.R., she was put on oxygen because of O2 was low. The numbness/tingling/weakness progressed to her arms within about 2 hours. Then she lost lucidity about 2 hours later. So she went from pretty normal to completely gone within 4 to 5 hours.

She has regained lucidity slowly since Saturday. She can hold simple conversations. She understand EVERYTHING that is said to her but simply cannot get her body to cooperate to answer. Once she's "in the swing" of the conversation, she can answer. If she's tired, it takes her much longer to come up with a response. She continues to experience muscle weakness, and now complains of cramps in her legs. She also has difficulty swallowing.

This all followed a lung infection which was treated with antibiotics and Prednisone. The drug course was completed Monday night or Tuesday morning. All of her tests have come back clean, aside from a neuroma (which the doctors swear aren't causing this) and a few oddities that they said "are nothing to worry about." The one that caught my attention in regards to GBS was elevated protein in her CSF.

Since her doctors seem to be fixated in the Alzheimer's diagnosis, I'm not sure how to approach them on this. What further tests can they do (so far blood, CTs, MRIs, and a LP)? Are there any treatments that can be "tested" to see if it is?

Finally, is a neurologist/neurosurgeon even the right KIND of doctor to be asking about this? I think they've avoided any autoimmune conditions because of her age, but it's looking more and more like it isn't strictly neurological.

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Old 01-12-2011, 11:29 AM   #2
Join Date: Oct 2005
Posts: 3
AndyDandy HB User
Re: Guillain-Barre syndrome?

Can you update us on your grandmother? I have been fighting an upper respiratory infection that started on Christmas night. I have lung problems so anything effects my lungs immediately. A week later I received a steroid shot because breathing was so hasn't worked as well as usual. And the Dr thought it was viral so antibiotic would not help.
This past Sunday, 15 days into this, I felt like a mac truck had hit me. Also a foot that was 3/4 numb...could only wiggle big toe. This has continued but not gotten worse. I too was directed to this GBS...The sites say it usually comes after viral/bacterial infection or outpatient surgery. I also had hand surgery recently. I'm waiting to see what happens next... So hoped to see a response on your grandmother! I(f anyone has any info on this...please pass it on.

Old 01-22-2011, 05:18 PM   #3
Join Date: Oct 2010
Location: Chicago, IL, USA
Posts: 51
Altari HB UserAltari HB User
Re: Guillain-Barre syndrome?

Hi Andy,

I hope your symptoms got better. Unfortunately, my grandmother passed away a few weeks after I posted. They never found out why, but the scans revealed a lot of brain death and blocked arteries, so they guessed a silent stroke/heart attack.

Hopefully, you got some answers and your symptoms are gone.

Old 01-23-2011, 06:38 AM   #4
Join Date: Oct 2005
Posts: 3
AndyDandy HB User
Re: Guillain-Barre syndrome?

I am sorry to hear of your Grandmother's death.. it certainly does seem that you were correct in your diagnosis of GBS from what I have read. My symptoms have not gotten worse, thank heaven. Have been on the mend but both my husband and I now have sore something new is starting!
I was telling a neighbor of my thoughts regarding GBS only to find that her 40 year old nephew has the severe kind of GBS...thankfully they have diagnosed correctly. He is paralyzed and cannot speak but as your Grandmother...he can understand. They are cleaning his blood from antibodies I think...and expect him to recover but it will take time.
Thank you for your response with such sad news. My children's Grandmother died recently at age 95...I keep her smiling picture on my desk as she was a great example to us all!

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