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.
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.
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.
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.
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!
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.
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.
My daughter was at UCSF Children's last year for 2 weeks and diagnosed with Hypereosinophillic Syndrome. While there she was in a lot of pain when they put IVs in. One day when they inserted an IV into her left arm, she was unable to feel or move it and had neck issues. They immediately did an MRI and found nothing. They called it FND said it would go away in time.
She has been able to move her left arm and neck, but still complains about not being able to feel her arm. I know she isn't making it up cause I take her to blood tests and when they insert the needle, she doesn't flinch.
I am looking for help here. I have read that Dr Jeffrey Stab is someone we should connect with but would love any guidance or advise.
My daughter was at UCSF Children's last year for 2 weeks and diagnosed with Hypereosinophillic Syndrome. While there she was in a lot of pain when they put IVs in. One day when they inserted an IV into her left arm, she was unable to feel or move it and had neck issues. They immediately did an MRI and found nothing. They called it FND said it would go away in time.
She has been able to move her left arm and neck, but still complains about not being able to feel her arm. I know she isn't making it up cause I take her to blood tests and when they insert the needle, she doesn't flinch.
I am looking for help here. I have read that Dr Jeffrey Stab is someone we should connect with but would love any guidance or advise.
Hello @bhavit and welcome to Mayo Clinic Connect. I am really sorry to hear about this diagnosis for your daughter and her numbness in her arm. This has to be very concerning for you on top of what you were already going through with her during that hospital stay.
I found a few members who may be able to provide some insight or share experiences with you such as @paulalina and @jenniferhunter.
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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
-- https://jnnp.bmj.com/content/90/5/608.abstract
Stress and functional neurological disorders: mechanistic insights
-- https://jnnp.bmj.com/content/90/7/813.abstract
@lisalucier mentioned you are in a rehab facility. Hope you are finding some relief and some answers.
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3 ReactionsI 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.
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Helpful -
Hug
4 ReactionsWe 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.
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3 ReactionsSo 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?
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4 ReactionsI 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!
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4 ReactionsHow 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!
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1 ReactionHi 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.
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Helpful -
Hug
2 Reactions@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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Helpful -
Hug
2 ReactionsMy daughter was at UCSF Children's last year for 2 weeks and diagnosed with Hypereosinophillic Syndrome. While there she was in a lot of pain when they put IVs in. One day when they inserted an IV into her left arm, she was unable to feel or move it and had neck issues. They immediately did an MRI and found nothing. They called it FND said it would go away in time.
She has been able to move her left arm and neck, but still complains about not being able to feel her arm. I know she isn't making it up cause I take her to blood tests and when they insert the needle, she doesn't flinch.
I am looking for help here. I have read that Dr Jeffrey Stab is someone we should connect with but would love any guidance or advise.
Hello @bhavit and welcome to Mayo Clinic Connect. I am really sorry to hear about this diagnosis for your daughter and her numbness in her arm. This has to be very concerning for you on top of what you were already going through with her during that hospital stay.
I found a few members who may be able to provide some insight or share experiences with you such as @paulalina and @jenniferhunter.
While we wait for members to join in, I found an older discussion on this topic that may be helpful to scroll through to learn from what members have already shared.
- Functional Neurological Disorder:
https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
Additionally, I wanted to share what I found on the Mayo Clinic website that I thought you may find helpful as well.
- Conversion Disorders: Symptoms and Causes
https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197
How old is your daughter?
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