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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

After dealing with neurological issues for 13 years, I was just diagnosed with FND by a hospital attending neurologist who did consult with my neurologist. However there are a few symptoms I have that do not fit the profile. Another attending neurologist I saw in the hospital this morning is not certain this is the correct diagnosis for me. Here is what I have been dealing with (*these items not consistent with FND):
-Foot drop
-Neurogenic bladder requiring intermittent catheterization
-Chronic pain
-Multiple episodes of optic neuritis with confirmed damage to my optic nerve*
-Severe spasticity throughout my body, esp in my legs*, I have a baclofen pump
-Multiple episodes of single limb paralysis and weakness
-5 episodes of ascending paralysis, much like Guillain-barre that recurs every 3-4 months, regain the ability to walk in between
-Hyperactive reflexes prior to baclofen pump, absent reflexes during paralysis episodes, normal reflexes between episodes*
-Chronic migraines (I have had migraines since I was a teenage so probably not related although worsened in last 10 years)
-Neurogenic bowel
-idiopathic tachycardia my cardiologist thinks it is autonomic nervous system damage
-Numbness and tingling in my feet

I had a doctor in Dallas tell me it was stress. I have a normal MRI and a lot of normal tests but not all of them are normal. I have sjogren, raynauds, asthma, GERD, and several random tests that are abnormal but don't amount to any clear diagnosis. A lot of FDN sounds like me but I am not convinced. My neurologist feels that my spasticity is a separate issue from the FDN but doesn't know what the cause of that is. I just don't know what to think. I feel a little more hopeful to actually have a diagnosis but just not sure it is right. From my understanding, retraining the brain only works if you accepts the diagnosis.

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Replies to "After dealing with neurological issues for 13 years, I was just diagnosed with FND by a..."

@poppymom
Good evening,
This may be partially duplicated but I have to tend to my mom, sorry. It may not be helpful anyway. This is a copy of an earlier post. Maybe you saw it. This is an excuse of a diagnosis that really makes me angry. FND in my opinion isn’t much more than an excuse for doctors to not properly diagnose a patient. I have Epilepsy and when stupid lazy doctors (In my unprofessional opinion) are unable to correctly diagnose something instead of say Idiopathic (Unknown) they use FND/Conversion disorder. The cause of seizures in Epilepsy are seldom identified anyway even under the best of circumstances and doctors.
I think it’s another way of saying “I don’t know and I’m not going to try and find out anything and I don’t really care.” I have Epilepsy and too many doctors claim a patient has Conversion disorder if their Neurologist exam, MRI & EEG are normal. All that means is that everything was functioning fine at that time. In the case of Epilepsy the majority of patients tests are normal. I’m not saying I don’t believe in psychogenesis. Just that t’s overly diagnosed.
Not sure what your granddaughters malfunction or what her symtomatology is so it’s difficult to be specific in her case.
Im sorry your granddaughter is suffering and I hope they can determine the cause of her problems. How old is she?
Best of luck to you all.
Jake

@poppymom
What were your symptoms that you were diagnosed with FND?
Jake

@poppymom Has your neurologist done any imaging of your spine? I ask because you mentioned several symptoms that can be caused by a spine problem that impinges on nerve roots or by spinal cord compression. I am spine surgery patient who had spinal cord compression and I tracked the development of my symptoms and I had foot drop, hyper reflexes, limb weakness and spasticity and spontaneous contractions in my legs and arms and cervicogenic headaches. I had spine surgery at Mayo. Your symptoms are also common with patients with Lyme Disease. If you need to rule that out, the test from the Igenex lab is supposed to be the most accurate, and the experts would be in the ILADS group of doctors. Their website has a provider finder. Since you are in Dallas, you might be interested in the Environmental Health Center in Dallas. That practice is the pioneer in the field of functional and environmental medicine. Here's the link. https://www.ehcd.com/ They may be able to correct problems that contribute to the issues like autoimmune diseases and sometimes this can be improved if you find a cause like a toxicity or infection behind it. You mentioned a normal MRI. If that was done of your spine, and they didn't do the complete spine and brain, it might be worth requesting this. I don't think your doctors know the causes of your symptoms, and you may want to seek others and advocate for yourself. It's so easy to be misdiagnosed unless you are seen by a doctor who can pinpoint the problem.