Should I seek second opinion on GBS/CIDP?
September 11, 2017 at 4:54 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. My feet hands, and a part of my face are still tingling, and my face is somewhat numb. 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 5:41 pm
It sounds like you need to see a neuro-ophthalmologist. The optic nerves are not considered “peripheral” so they are not a symptom of CIDP. Vision changes can be caused by autoimmune disorders that specifically target the optic nerves (such as NMO, there’s a blood test for that), medications that raise Intracranial Hypertension (like steroids), and from increased intracranial pressure (such as Idiopathic Intracranial Hypertension, which is diagnosed through opening pressure readings of lumbar punctures but there are a group of patient who can have all the symptoms but still be pressure test negative). NMO and optic neuritis need specific testing as the MRI is usually not able to detect. I’d keep hunting, but what you have may be a rare disease so you need to find specialists not generalists. Good luck.
You must be logged in to reply to this topic.