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Anyone have FND? Looking for more info and someone to talk to, also on how to get treatment. Thanks!
Interested in more discussions like this? Go to the Brain & Nervous System group.
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!
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
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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.
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.
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.
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?
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!
How wonderful, @paulalina! I'm glad to hear that you were able to get into Mayo, Rochester. I'm looking forward to hearing about your experience at Mayo!
@redhead63 A liver condition can cause higher ammonia blood levels. I used to take care of an elderly woman with this and the cause was alcoholism that resulted in liver damage, so the waste products were not converted properly into less toxic products to be excreted by the kidneys. She had brain damage from the ammonia that resulted in a loss of short term memory. Here a link that explains the process. https://www.mayoclinic.org/tests-procedures/blood-urea-nitrogen/about/pac-20384821
Hi Jennifer l just saw your post but elevated ammonia levels are not always from alcohol. I have elevated ammonia levels and mines is from non-alcoholic liver disease. Mines was from medications. Ones l was allergic to and also recall one and antidepressant. I was placed on 3 recall high blood pressure meds. And when l came to the mayo clinic on my records the doctors always put on that l was previously on depakote. Which l told the doctor l was having reactions too. So it was the medication. But they really don't look at your ammonia levels. They go buy your symptoms. So now l just have to end differently and rest. So it's not always from cirrhosis.
@techi Lisa, thanks for adding your input to the discussion. Basically, because ammonia is a toxic waste product of metabolism, the body needs to convert this to urea which is a less toxic waste product that is excreted by the kidneys. Anything that interrupts that process could affect it. I'm not a medical professional, and it's likely that there could be different reasons for a condition. Often, there can be overlapping symptoms for different medical conditions that share common symptoms. As patents, we should try to be aware of this, and doctors take many factors into account when they connect symptoms to a diagnosis. I'm glad you have discovered the source of your condition and taken action. It's good to know about and pay attention to adverse effects from prescription drugs, and to bring this to your doctor's attention.
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