Mayo Clinic Connect
Anyone have FND? Looking for more info and someone to talk to, also on how to get treatment. Thanks!
Liked by Dee, Leonard
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.
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What were your symptoms that you were diagnosed with FND?
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Lisa Lucier
@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.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Lisa Lucier, Leonard ... see all
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.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Leonard, Jennifer Hunter
Have you had s Spinal tap? My MS diagnosis was missed for years till I had a cervical MRI and spinal tap
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Leonard
I have had multiple spinal taps. I have a few random antibodies that were elevated, my protein level is always elevate.
Liked by Leonard
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.
Sending my prayers for healing. So much to handle…you are such a strong person. Has anyone mentioned to you CIDP? I was just diagnosed with CIDP and so many of your symptoms are listed under this neurological disease. God bless!
Liked by Lisa Lucier, Leonard
A lot of other countries consider my diagnosis a ‘functional’ disorder when it is a serious, neurological disorder that should be treated as so. It is sad when this diagnosis is thrown around bc they can’t find the correct answer the first time. Thankfully I do have the proper diagnosis and I have good doctors and will hopefully be seeing an M.E. (myalgic encephalomyelitis) specialist next year. I’ve heard we are about 2 years from treatment being released for this diagnosis and there is a ton of research.
My advice for those who get this FND thrown around: seek help elsewhere and continue to advocate for yourself.
I thankfully have not had this diagnosis, but it was mentioned in the neuro MD’s notes from Mayo before they found my diagnosis and it pissed me off when I found out what it meant. I’m not crazy and I have many physiological problems that need to be addressed and thankful that I have good doctors here in town to help me as best they can. The main MD at Mayo I saw was excellent and after her and the specialists talked determined my diagnosis based on my test results.
Keep fighting to find the right answer. Nothing worse than the unknown or MDs that don’t believe you! Good luck
Amen!!! Mines was first conversion disorder then at the Mayo by the neurologist FND but you know God was in control and it ended up being HE and just recently l had emergency heart ablation surgery and be misdiagnosed since 2014. Thrown in mental wards given antidepressants and allergic to a hist of meds. And dealing with short med staff, records not getting to doctors, lies, messing with my credit, mistaken identity and l can go on but l have to give it to God because he will take care of everything. So l am seeing that when l see other people going through what l am. And l am seeing miracles people who are getting better and l am rejoicing with them. And now l have a team that cares. So sometimes we have doctors that don't want to go any further and some who like to intimidate and then some who are humble and love helping. And pretty soon everyone will have a psych diagnosis because theres no confirm test to really prove that so that the diagnoses you will see. And so we give more meds and don't solve the problem. Just like Alzheimer's you couldn't definitely rule that until a person was dead but everyone throws out that diagnoses. They did that to my sister before they even did a PET test. That was last year she just got the test last week. They did even have the machine to do it until this year. But we can make that diagnosis, figure that one out. When l came back from the Mayo clinic and gave my doctor my records last year then this year they got the machine. And we had the same doctor but l still don't think she has Alzheimer's l think she has an autoimmune disease because shes deteriorating to fast but l just a sister. Not s professional no but l.have common sense. So l with you FND is not a diagnoses it's a thought!!!
Yes that is what they thought I had first. My nerve conduction studies have been normal. Also, I was already getting IVIG once a month when the ascending paralysis started. CIDP usually stays under control with IVIG. I was on monthly IVIG for 1 year after this started. My episode in February was only 2 days after my IVIG infusion. I just had a second EMG/nerve conduction study done during the acute phase of the paralysis and it is still normal so CIDP has been ruled out more than once.
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?
Hi @poppymom — I found a couple of interesting articles that may provide some insight into FMD using Google Scholar (https://scholar.google.com/).
Complex regional pain syndrome and functional neurological disorders – time for reconciliation
Stress and functional neurological disorders: mechanistic insights
@lisalucier mentioned you are in a rehab facility. Hope you are finding some relief and some answers.
I was diagnosed with Functional Tremors/Conversion Disorder last summer at Mayo, Rochester. We had already begun training a Standard Poodle as a Service Dog for me which was a huge blessing. training Beau (Beau Geste) kept me busy and took my mind off what was happening in my therapy. Weekly appointments with a Psychologist who specializes in Complex trauma/Complex PTSD. At 64 years old a lot of things began to make sense for me. I'm 65 now and fully committed to doing the work necessary to help myself. Beau can alert me before I have an episode and applies compression pressure with his 60 pounds of smart, loving, care. I am amazed by how smart he is and what a great job he does for me, lots of classes in obedience for socialization (we live in the boonies). With Beau, I can enjoy things I had not felt comfortable with before, like going out shopping, social situations, crowds are tough for me. My Psychiatrist is brilliant and has been practicing for over 40 years. I am grateful for Mayo going over everything to make an accurate diagnosis. I am currently feeling like I'm on the road to learning who I grew to be, adventure, courage, love of self.
We are considering coming up to the Mayo clinic. On of the attending neurologist at the hospital did not think I had FND and my rehab doctor does not think I have it either. I have not had a chance to see my own neurologist. The biggest reason they do not is because I have damage to my optic nerve from optic neuritis, I have severe spasticity and I lose my reflexes during my paralysis episodes. All 3 of these are inconsistent with FND. Now FND is the closest thing to a diagnoses I have ever been given. Everyone else says they have never seen anything like this. Also, I do not have the Hoover's sign mentioned on the neurosymptoms.org website. In some ways I am more confused than ever. I get out of the rehab from my latest episode of total body paralysis on Friday but I don't see my neurologist for another month. Being from Texas, I am not sure I want to go to the Mn Mayo clinic in the winter though. I will be ok with the AZ or FL locations.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Leonard
So glad to have you on Connect, @paulalina, welcome!
It sounds like you are going through a trying time in life and I'm glad that you are choosing to share your journey here on Connect. I would like to invite @ihatediabetes to join you as well. She has also been involved in some difficult therapeutic processes and could certainly understand what you are experiencing.
Your service dog sounds absolutely wonderful! How long have you had him? You might enjoy a Connect discussion on the value of pets. Here is a link to that discussion, https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/?utm_campaign=search. Just click on the link and read some of the posts about the value of pets and feel free to add your own experiences.
I look forward to hearing from you again. Will you continue to post on Connect?
Liked by John, Volunteer Mentor, Lisa Lucier, Jennifer Hunter, Paulalina
I called Mayo, sent them an email registration form and within three days had an appointment at Mayo Rochester. We are only three and a half hours drive from them so it's the closest for us. I was so impressed with the patient care, team approach to care, the volunteers were amazingly helpful and they are easy to find because there are so many of them. It took me almost two and a half YEARS to get into a Neurologist in the Quad Cities area where we live. Mayo certainly went above and beyond for me!
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Lisa Lucier, Jennifer Hunter
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