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amber3212 (@amber3212)

Functional Neurological Disorder

Brain & Nervous System | Last Active: Jul 17 11:44am | Replies (49)

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@poppymom

I have been dealing with neurological problems for over 12 years. For the past 9 years, I have had single limb paralysis, mostly in the right leg, recurring every 6-8 months, occasionally involving other limbs though. Every limb has been involved at one time or another. I also have a neurogenic bladder, chronic pain/fibromyalgia, foot drop, muscle spasticity, especially in my legs, numbness and tingling in my fee., I have had multiple episodes of optic neuritis (this does not fit the FND diagnosis). Last March, I started having episodes of ascending paralysis that would start with sudden paralysis of my legs, then gradually move up my body until I was completely paralyzed from the neck down, including my ability to swallow and occasionally with respiratory difficulty. I have never had to be intubated but needed oxygen and BIPAP on several occasions. This has happened every 3-4 months since last March. I am currently in a rehab facility with my 5th episode of ascending paralysis. I lose all of my reflexes when I have these episodes (also does not fit FND). I have random elevated antibodies, +ANA, elevated SED rate, chronic anemia, normal brain and spine MRI, + sjogren's antibody but a negative lip biopsy. My doctor is repeating my lip biopsy in a few months because my dry eyes and mouth are getting worse and worse every time she sees me. Since having the ascending paralysis episodes, I have developed a neurogenic bowel, some autonomic nervous system problems such as low BP, idiopathic tachycardia, autonomic dysreflexia. As an FYI, I also have Raynaud's, asthma, severe GERD, chronic constipation, cyclic vomiting and a mild anxiety disorder that is well controlled after I did some counselling.

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Replies to "I have been dealing with neurological problems for over 12 years. For the past 9 years,..."

Hi, @poppymom – You have been dealing with a lot. Kudos to you for your strength in contending with these symptoms and continuing to pursue answers.

Here are a couple discussions you may be interested in on Mayo Clinic Connect that touch on individual conditions or symptoms you mentioned:

– On fibromyalgia https://connect.mayoclinic.org/discussion/fibromyalgia-3

– On spasticity https://connect.mayoclinic.org/discussion/spasticity

You may also be interested in some of the many discussions in the Neuropathy group https://connect.mayoclinic.org/group/neuropathy.

Also, I wanted to invite to return to this discussion on functional neurological disorder (FND) @techi @jubilee @marycoy @amber3212 @uldiver, who have mentioned FND in themselves or a loved one. @danielad and @johnbishop also may have some input as you are considering your new FND diagnosis, while noting that you have some symptoms that don't fit the profile and trying to fully understand your situation.

How are things going for you in the rehab facility? For how long do they anticipate you will be there?