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Anyone have FND? Looking for more info and someone to talk to, also on how to get treatment. Thanks!
@danielad @jakedduck1 I think I was the one who mentioned not using medical language, but the context of that was with spine surgeons. I think that is a different ball game with higher stakes where confusing symptoms can scare the surgeons right out of helping a patient and it happens a lot. It happened to me 5 times over 2 years, and that is why I came to Mayo where they did listen, and they recognized what I was describing. That was my prior experience before I came to Mayo in describing my symptoms to a surgeon's nurse and it caused issues. She was attacking my credibility, and because all the communications to the surgeon were filtered through his staff, I wondered if she told him at all. It didn't seem that she knew as much as I did about the real symptoms I was having that were caused by my spine injury and she was refusing to make follow up appointments for me. After 5 months of complying with their requests, the surgeon decided not to offer surgery. It wasted my time and my deficits increased because of increased pressure on my spinal cord from the bone spurs that were digging into it. No doctor wants a patient to diagnose themselves from the internet, and then tell them how to do their jobs. I think that is what the nurse may have thought, but they missed understanding the cause of my symptoms, and missed the real diagnosis. In my search for help, I also ran into very arrogant surgeons who didn't want to take the time to answer questions at all. If I wasn't important enough to be permitted to ask a question, they probably didn't want me to try to match them with my understanding of medical terminology. If cases are simple without additional complexities, perhaps the response would have been different, but mine was not one of those cases. I was a helpless patient on my way to becoming disabled, waiting to be rescued, and the doctors were putting their needs for stellar surgical success rates first. They didn't understand my case and wouldn't take a risk on me. It isn't easy to look for new surgeons as there are not a lot of them, and they can booked for months. A patient shouldn't really present themselves as an expert at their consultations because they are consulting an expert, and I think if correct medical terminology is used, it should be posed as a question to the doctor, not a diagnosis type statement of this is what I have, now you can fix it. That probably isn't the intent of the patient, but you don't want a provider to interpret it that way.
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@jenniferhunter — Hi Jennifer; I am very sorry to know you had such terrible experiences. It is not something anyone should have to go through, even once, let alone 5 times in 2 years!! I am so happy to know you found a very different atmosphere at Mayo. The acceptance, reassurance, and help you found at Mayo are basic expectations all of us have and should find in a doctor and his/her medical staff in any medical facility. How are you doing now? Did you have surgery? A big hug!
@danielad Hi Dee. A big hug for you too, Dee! Yes I had surgery at Mayo 2 years ago and it changed my life. I had spinal cord compression and was loosing the ability to control my arms. I wish I had come to Mayo first, and now I refer patients to my surgeon there. I was very impressed with my care, and now will not go anywhere else. Those 2 years were the hardest in my life because I was also taking care of both my disabled parents, and my dad was in end stage heart failure and passed away, and I was in pain and fearful of my future. I had more time to spend with my dad because I wasn't having surgery because I couldn't get an offer, but a couple weeks after my dad's services, I was called for appointments at Mayo. I am still working on rebuilding muscle that I lost, but here is my story. You'll also find a lot more in the Art for Healing Discussion in the Just Want to Talk Group.
https://connect.mayoclinic.org/discussion/art-for-healing/ (pictures on page 1)
Hi, @marycoy, welcome to Mayo Clinic Connect. That's great you are trying to help your granddaughter get the right treatment for her conversion disorder/ functional neurological disorder.
Your search to better understand this disease and what is the source of her symptoms – malfunction between the nervous system and the brain, or something psychological and behavioral – sounds wise. Here is some Mayo Clinic information that may be useful in your search for further clarification on the source of your granddaughter's symptoms.
I'd like to ask @uldiver @amber3212 @jubilee @techi @jenniferhunter to offer their thoughts on the source of the symptoms for patients who have a Conversion Disorder/ Functional Neurological Disorder diagnosis like your granddaughter.
Has your granddaughter seen multiple doctors to consult about her condition, @marycoy? Has any treatment been recommended to this point?
Hi @marycoy. I also have FND and I have been told and have come to believe as a result of my treatment that it stems from a central sensitization issue and psychological issues are NOT the root cause. Mayo Clinic successfully treats patients with FND as a central sensitization syndrome within their 3 week pain rehabilitation program. The same protocols used to address chronic pain also work for other FND symptoms. It has changed my life and for that reason I highly recommend the program. If you have not already viewed Dr. Sletten's video that explains central sensitization, you can view it at https://www.youtube.com/watch?v=8defN4iIbho. Dr. Sletten is located at Mayo Clinic in Florida, but the same program is available at Mayo Clinic in Rochester and Arizona. If your granddaughter has not already had a consult at one of Mayo Clinic's Pain Rehabilitation Centers, it may be valuable for her to request a consult with one of the Pain Rehabilitation Center teams. She can self-refer to request an appointment if her local physicians are not familiar with this program, or not willing to make the referral for her. The link to the webpage is https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center.
I also was diagnosed with Functional Disorder through Mayo. It’s what they do when they cannot find or do the proper tests. I finally was diagnosed with Autonomic Dysfunction through the Cleveland Clinic. I do no like the Mayo Clinic because this is the third time that they diagnosed me. I am so done with that place.
You are correct when they can't find anything or don't want to try then they diagnosis you with FND or schizophrenic, bipolar or psychotic. But at the mayo clinic that when l found out they did my TIP procedure incorrectly at the hospital in my state. And the neurologist at the mayo clinic had to finally say they misdiagnosed me. She hated to say that too because she handed me the website on FND.
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):
-Neurogenic bladder requiring intermittent catheterization
-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)
-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.
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.
What were your symptoms that you were diagnosed with FND?
@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.
Thanks for your response. I have had multiple MRIs of my brain and spine with and without contrast. My brain is normal. I have some narrowing of my spinal column without nerve involvement. I have been tested for Lyme, heavy metals and those were all negative. I am actually in Austin, I just saw a doctor in Dallas as a second opinion.
I am very good at advocating for myself. I was a nurse for 17 years prior to becoming disabled. I worked with surgeons who are known for having God complexes. I had to stand up to them all the time. I am not afraid to stand up to a doctor. I did a lot of doctor shopping 13 years ago before I found the neurologist I have now because when all of this started, no one could figure out the cause. It seemed like it was MS but I had a normal MRI. I even had an episode of not being able to swallow with an absent gag reflex for 1 week that the attending MD told me it was psychological and I was faking it. How can a person fake not having a gag reflex, especially considering I actually have a very strong gag reflex and gag very easily???
When I started seeing my current neurologist, she felt I had MS but that the lesions were probably too small to see since I had only been having symptoms for a year. She treated me for MS up until I started having the ascending paralysis when she started looking for other things since this is not a symptom of MS and my MRI continued to be negative. With as aggressive as my symptoms had been and as long as I had been dealing with this, I should have had lesions by then. My neurologist has been great. She wants to figure this out as bad as I do. I have not seen her since this last episode started, only heard from the attending at the hospital that she spoke to her on the phone. I have not been able to discuss these questions with her yet since I am in an inpatient rehab facility trying to relearn how to do basically everything again. I have an appointment with her on the 16th and will discuss my concerns with her then. I am also going to ask her opinion about going up to the Mayo clinic to be evaluated. I figure if anyone will know for sure if this is FND, it will be the doctors at Mayo.
We have also looked into having an evaluation by Undiagnosed Network. I am waiting on my neuro to finish her letter. It is taking her a while because she is going through my entire medical record to make sure she has all the information in there they might need and there are over 300 pages in my medical recors.
Have you had s Spinal tap? My MS diagnosis was missed for years till I had a cervical MRI and spinal tap
I have had multiple spinal taps. I have a few random antibodies that were elevated, my protein level is always elevate.
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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