1. < Neuropathy

Functional Neurological Disorder Diagnosis

Posted by DawnG @imagine1, May 19 1:30pm

After MRIs, a lumbar puncture, and lots of bloodwork, my neurologist diagnosed me with Functional Neurological Disorder. My tests came back as normal, except for unexplained lesions on my brain and elevated c-level proteins.

My neuropathy has become progressively worse in the last two years. I now have braces on both legs and a walker. The neurologist has referred me to physical therapy and psychology.

I feel as though this may be a diagnosis made because he doesn't know what's causing the neuropathy and thinks it's, at least in part, psychological. Has anyone else received this diagnosis? Or do you know about FND?

Interested in more discussions like this? Go to the Neuropathy Support Group.

closer0043 | @closer0043 | May 19 3:44pm

Have you had a nerve conduction test or EMG? That is how my neurologist diagnosed me with mild sensory axonal polyneuropathy. Unfortunately, there doesn’t seem like they have many treatment options for most of their findings especially since your MRIs didn’t reveal any compressed nerves. Good luck in finding answers. Many on this message board are in the same boat as you as far as an incomplete diagnosis. Hang in there!

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2 replies
josiegirl2 | @josiegirl2 | May 19 3:49pm
In reply to @closer0043 "Have you had a nerve conduction test or EMG? That is how my neurologist diagnosed me..." + (show)
@closer0043

Have you had a nerve conduction test or EMG? That is how my neurologist diagnosed me with mild sensory axonal polyneuropathy. Unfortunately, there doesn’t seem like they have many treatment options for most of their findings especially since your MRIs didn’t reveal any compressed nerves. Good luck in finding answers. Many on this message board are in the same boat as you as far as an incomplete diagnosis. Hang in there!

Jump to this post

I did all the tests, doctors, surgeons and bottom line is you have what you have and deal with it. No cure and it is what some people get and it sucks but true. I won't do anymore visits with no results. be well........

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1 reply
DawnG | @imagine1 | May 19 4:16pm
In reply to @josiegirl2 "I did all the tests, doctors, surgeons and bottom line is you have what you have..." + (show)
@josiegirl2

I did all the tests, doctors, surgeons and bottom line is you have what you have and deal with it. No cure and it is what some people get and it sucks but true. I won't do anymore visits with no results. be well........

Jump to this post

Yes, I'm nearly to that point. Have wanted to point to a cause, but I guess that sometimes, it's just not possible.

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DawnG | @imagine1 | May 19 4:18pm
In reply to @closer0043 "Have you had a nerve conduction test or EMG? That is how my neurologist diagnosed me..." + (show)
@closer0043

Have you had a nerve conduction test or EMG? That is how my neurologist diagnosed me with mild sensory axonal polyneuropathy. Unfortunately, there doesn’t seem like they have many treatment options for most of their findings especially since your MRIs didn’t reveal any compressed nerves. Good luck in finding answers. Many on this message board are in the same boat as you as far as an incomplete diagnosis. Hang in there!

Jump to this post

Yes, I've had two EMGs, with two different doctors, and two different results. One said severe neuropathy, the other said mild. I was ready to adopt a no-more-EMGs-ever policy, but the neurologist scheduled me for another one next week.

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windyshores | @windyshores | May 19 4:53pm

@dawng if there are brain lesions and elevated CRP (which means inflammation) why were your diagnosed with a functional disorder?

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1 reply
josiegirl2 | @josiegirl2 | May 19 8:53pm

After years of doctors and no true info I am tired of the game. So many titles for conditions and feel they just don't know and just more tests etc and bottom line there is no cure. We need to find a way to cope and understand it is what it is. Not fair but real.............

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 20 7:20am
In reply to @josiegirl2 "After years of doctors and no true info I am tired of the game. So many..." + (show)
@josiegirl2

After years of doctors and no true info I am tired of the game. So many titles for conditions and feel they just don't know and just more tests etc and bottom line there is no cure. We need to find a way to cope and understand it is what it is. Not fair but real.............

Jump to this post

You are not alone, there are a few discussions on finding a way to cope and understand it is what it is, not fair but real.

--- Increasingly Difficult to Accept Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/nor-accepting/
--- Peripheral Neuropathy life changing: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-life-changing/
--- Psychological effects of living with neuropathy: https://connect.mayoclinic.org/discussion/psychological-effects-of-living-with-neuropathy/
--- Have You Made Any Kind of Peace With Having Your Neuropathy?: https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/

What helps me is researching and learning as much as I can about the condition and what treatments may be available that help.

REPLY
1 reply
DawnG | @imagine1 | May 20 7:36am
In reply to @windyshores "@DawnG if there are brain lesions and elevated CRP (which means inflammation) why were your diagnosed..." + (show)
@windyshores

@dawng if there are brain lesions and elevated CRP (which means inflammation) why were your diagnosed with a functional disorder?

Jump to this post

Neurologist thought I had MS, but when lumbar puncture tests came back normal, he just said he couldn't explain the brain lesions - he thinks it's some sort of scarring or that I just have more than the normal allotment due to aging (I'm 69).

REPLY
DawnG | @imagine1 | May 20 7:36am
In reply to @johnbishop "You are not alone, there are a few discussions on finding a way to cope and..." + (show)
@johnbishop

You are not alone, there are a few discussions on finding a way to cope and understand it is what it is, not fair but real.

--- Increasingly Difficult to Accept Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/nor-accepting/
--- Peripheral Neuropathy life changing: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-life-changing/
--- Psychological effects of living with neuropathy: https://connect.mayoclinic.org/discussion/psychological-effects-of-living-with-neuropathy/
--- Have You Made Any Kind of Peace With Having Your Neuropathy?: https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/

What helps me is researching and learning as much as I can about the condition and what treatments may be available that help.

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These links to discussions are very helpful, John. Thank you.

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josiegirl2 | @josiegirl2 | May 20 12:31pm
In reply to @josiegirl2 "After years of doctors and no true info I am tired of the game. So many..." + (show)
@josiegirl2

After years of doctors and no true info I am tired of the game. So many titles for conditions and feel they just don't know and just more tests etc and bottom line there is no cure. We need to find a way to cope and understand it is what it is. Not fair but real.............

Jump to this post

Sorry I just don't feel with my experiences anyone knows what they are talking about. Doctors go to school and then it is meds and surgery. If it has worked for some bless. Find your own solution and I don't feel all the mri. cats. blood and come up with drugs or shot. I am on my own...........Best

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