Should I seek second opinion on GBS/CIDP?
September 11, 2017 at 4:48 pm
I suffered from GBS 6 years ago and I’ve had residual symptoms ever since, although my doctor back then had told me that I’m on the road to full recovery. My residual symptoms were numbness in knees/ still no reflex / my knees giving out when tired / weaknesses in fingers when tired/ chronic fatigue.
Since about a month and a half ago, my residual symptoms began to get worse. My knees are giving out on me more frequently, and I’m almost afraid of falling because it is difficult to balance myself, especially when I’m walking downhills. I also have constant tingling sensations in my feet and hands. Now I’m developing blurry and double vision, and numbness on my face as well.
About two weeks ago, I got weary of my symptoms and went to the ER. The neuro resident there admitted me and I went through heart ultrasound, EKG, MRIs (Brain, Spinal), lumbar puncture, and EMG. Everything came back normal. They diagnosed me with functional neurological disorder, which means that nothing is physically wrong with my body, but “my nervous system isn’t functioning properly,” whatever that means. They ruled out GBS and CIDP because 1) they couldn’t find anything positive, 2) vision blurriness is typically not associated with GBS/ CIDP. They think my symptoms are somehow stress induced and that I would get better soon. I was discharged.
I’m not getting better. I’m mostly worried about my eyes. It’s hard to focus my eyes because it seems as if they want to move on their own. I also went to an eye doctor, but she told me that my vision is fine and that I should use artificial eye drops… I told her that it is my EYE MOVEMENTS I’m concerned about, but she just seemed perplexed (“I checked your retina and you don’t have any nerve inflammation, so you do not have any nerve issues”) and told me to rest.
I’m pretty frustrated at the moment. My symptoms are debilitating (I can’t read for an extended time because my eyes are blurry and weak, although I am a student and I need to READ) but no one is listening to me. What should i do?
September 11, 2017 at 5:10 pm
A second opinion is never a bad thing (except perhaps to your wallet) assuming you can find a qualified medical professional.
Are you on steroids at all? When my prednisone goes over 10 mg/day, my vision gets blurry and I need drops for glacoma.
I dont think they are common but there are Neuro-Ophthalmologists who I assume would be better to address the concerns.
January 3, 2018 at 8:28 pm
Get a second opinion, by all means. My husband is getting his third opinion this week. As age sets in and after 20 years since the onset of GBS his symptoms change, mostly feels like he is getting weaker, but has not had any problem with his eyes.
Hang in there, hopefully you have a good support at home.Take care
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