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.
Thank you so much for your response. My daughter just turned 17. She is already under the care of Dr Tefferi at Mayo but adding someone focused on conversion. Disorder may be the right next step.
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.
@bhavit I was looking up Hypereosinophilic Syndrome which seems to be like an overreaction to things the body would be allergic to, so that begs the question, what was in the IV just prior to the episode where your daughter lost feeling in her arm? Was it a steroid treatment for the Hypereosinophilic Syndrome which essentially should calm down a reaction or something else? I would be looking to find out all the ingredients in that IV and wondering if that was the cause of the reaction. It doesn't hurt to ask the question.
Thank you so much for your response. My daughter just turned 17. She is already under the care of Dr Tefferi at Mayo but adding someone focused on conversion. Disorder may be the right next step.
@bhavit-the diagnosis of “conversion disorder”, is very common when a patient experienced something while under medical care. This is often times a way for the medical care team to not have to take responsibility for it. So be very careful to run w/ this diagnosis. The best thing you can do is make sure your daughter knows you believe her. Because at this point the care team she is/was under has removed any liability of an iatrogenic cause.
@bhavit-the diagnosis of “conversion disorder”, is very common when a patient experienced something while under medical care. This is often times a way for the medical care team to not have to take responsibility for it. So be very careful to run w/ this diagnosis. The best thing you can do is make sure your daughter knows you believe her. Because at this point the care team she is/was under has removed any liability of an iatrogenic cause.
@bhavit I was looking up Hypereosinophilic Syndrome which seems to be like an overreaction to things the body would be allergic to, so that begs the question, what was in the IV just prior to the episode where your daughter lost feeling in her arm? Was it a steroid treatment for the Hypereosinophilic Syndrome which essentially should calm down a reaction or something else? I would be looking to find out all the ingredients in that IV and wondering if that was the cause of the reaction. It doesn't hurt to ask the question.
Thanks Jennifer, it's no content in the IV. Her eosinophils count was off the charts when she was admitted. The fear was because of the numbers she had some sort of cancer. Luckily all of that was all negative. We continue to monitor her numbers.
I was recently diagnosed @Johns Hopkins with FND after being to 14 specialists.
Had a heart ablation 1 1/2 yrs ago and had symptoms upon awakening from surgery.
I have inward/outward severe tremors, churning and discomfort in my chest constantly, electrical charge feeling going thru my upper body they my face effecting my sight and labored breathing unrelated to my lungs.
When dozing off, there is an electrical charge feeling in my chest that prevents me from falling asleep without sleeping pills.
All is very frustrating and and has had rehabilitating effects on my life. I’m not at all convinced it’s FND.
Have upcoming appointment at Mayo pulmonary but convinced whatever this is, it is all related.
I too would appreciate any input or thoughts on this.
I had been diagnosed with essential tremors several years ago because my sister has them. Currently I saw a motion doctor who said I do not have essential tremors. He tested me for and ruled out Parkinson but said I have dyspotia tremors or FND
Functional Neurological Disorder. He increased my Primidone doses and and I am going to physical and occupational therapy. If it doesn't work they will try botox. Has anyone done this and has it helped?
Injecting botox scares me.
I am new here and decided to browse I do not see a support group for FND, I was diagnosed yesterday, and just looking for support. This is not easy! Just wondering if anyone else is going through the samething?
I am new here and decided to browse I do not see a support group for FND, I was diagnosed yesterday, and just looking for support. This is not easy! Just wondering if anyone else is going through the samething?
I too have been diagnosed in August of 2022. I am still struggling with understanding it 100%. I have seen multiple Dr's, neurologist, psychologist, and a neuropshycolgist. I am doing CBT currently buy have not had any changes in seizures or balance. Severe headaches and extreme fatigue. Electric shoke feeling along with ice water sensations in legs and arms and the back of my head. I am making an appointment with the Mayo Clinic to possibly get a plan to help lessen this.
I had been diagnosed with essential tremors several years ago because my sister has them. Currently I saw a motion doctor who said I do not have essential tremors. He tested me for and ruled out Parkinson but said I have dyspotia tremors or FND
Functional Neurological Disorder. He increased my Primidone doses and and I am going to physical and occupational therapy. If it doesn't work they will try botox. Has anyone done this and has it helped?
Injecting botox scares me.
Hello @purpleturtle. It is great you are going to physical and occupational therapy as two options in addition to other medicinal therapies your doctor has recommended.
I did this to better help you connect to past comments as well as members such as @patheflin@bhavit@nrd1 and @jenniferhunter who have all been in the discussion previously.
How long will you give the therapy a go before you will know if it is working for you?
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Thank you so much for your response. My daughter just turned 17. She is already under the care of Dr Tefferi at Mayo but adding someone focused on conversion. Disorder may be the right next step.
@bhavit I was looking up Hypereosinophilic Syndrome which seems to be like an overreaction to things the body would be allergic to, so that begs the question, what was in the IV just prior to the episode where your daughter lost feeling in her arm? Was it a steroid treatment for the Hypereosinophilic Syndrome which essentially should calm down a reaction or something else? I would be looking to find out all the ingredients in that IV and wondering if that was the cause of the reaction. It doesn't hurt to ask the question.
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1 Reaction@bhavit-the diagnosis of “conversion disorder”, is very common when a patient experienced something while under medical care. This is often times a way for the medical care team to not have to take responsibility for it. So be very careful to run w/ this diagnosis. The best thing you can do is make sure your daughter knows you believe her. Because at this point the care team she is/was under has removed any liability of an iatrogenic cause.
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Hug
3 Reactions@nrd1
AMEN!!!
Jake
Thanks Jennifer, it's no content in the IV. Her eosinophils count was off the charts when she was admitted. The fear was because of the numbers she had some sort of cancer. Luckily all of that was all negative. We continue to monitor her numbers.
I was recently diagnosed @Johns Hopkins with FND after being to 14 specialists.
Had a heart ablation 1 1/2 yrs ago and had symptoms upon awakening from surgery.
I have inward/outward severe tremors, churning and discomfort in my chest constantly, electrical charge feeling going thru my upper body they my face effecting my sight and labored breathing unrelated to my lungs.
When dozing off, there is an electrical charge feeling in my chest that prevents me from falling asleep without sleeping pills.
All is very frustrating and and has had rehabilitating effects on my life. I’m not at all convinced it’s FND.
Have upcoming appointment at Mayo pulmonary but convinced whatever this is, it is all related.
I too would appreciate any input or thoughts on this.
-
Like -
Helpful -
Hug
1 ReactionI had been diagnosed with essential tremors several years ago because my sister has them. Currently I saw a motion doctor who said I do not have essential tremors. He tested me for and ruled out Parkinson but said I have dyspotia tremors or FND
Functional Neurological Disorder. He increased my Primidone doses and and I am going to physical and occupational therapy. If it doesn't work they will try botox. Has anyone done this and has it helped?
Injecting botox scares me.
-
Like -
Helpful -
Hug
1 ReactionI am new here and decided to browse I do not see a support group for FND, I was diagnosed yesterday, and just looking for support. This is not easy! Just wondering if anyone else is going through the samething?
-
Like -
Helpful -
Hug
1 ReactionI too have been diagnosed in August of 2022. I am still struggling with understanding it 100%. I have seen multiple Dr's, neurologist, psychologist, and a neuropshycolgist. I am doing CBT currently buy have not had any changes in seizures or balance. Severe headaches and extreme fatigue. Electric shoke feeling along with ice water sensations in legs and arms and the back of my head. I am making an appointment with the Mayo Clinic to possibly get a plan to help lessen this.
-
Like -
Helpful -
Hug
1 ReactionHello @purpleturtle. It is great you are going to physical and occupational therapy as two options in addition to other medicinal therapies your doctor has recommended.
You will notice that I have moved your post into an existing discussion on this same topic, which you can find here:
- Functional Neurological Disorder (FND)/Conversion Disorder: https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
I did this to better help you connect to past comments as well as members such as @patheflin @bhavit @nrd1 and @jenniferhunter who have all been in the discussion previously.
How long will you give the therapy a go before you will know if it is working for you?
-
Like -
Helpful -
Hug
1 Reaction