Comments on: say that again…

By: mixed signals… | Just Shake It Off

mixed signals… | Just Shake It Off — Wed, 05 Jul 2023 08:46:12 +0000

[…] But, the other night, when I was looking up some information about FND…I came across the social media accounts of another woman living with FND. And she explained it in the easiest-to-understand way I’ve heard or seen since I was diagnosed in March. […]

By: Michelle Goodwin

Michelle Goodwin — Tue, 28 Mar 2023 01:19:04 +0000

Thank you for sharing your story. I have and I am in the same boat I have FND and FMD. I have Seizures all day everyday. I am not able to work let alone go from one room to the next without a seizures. My seizures are so severe that my body is constantly thrown out of alignment t my ribs my back my hips everything gets moved out of place. I have had this disease since 2019 I have been bounced from neuro to neuro ending with the same sentence you need to seek a psychiatrist it’s mental it’s just pat trauma causing it. In the past 5 years my symptoms have not been controlled relieved or even taken into account with any neuro around me in NH. My symptoms are worse. All I have done is advocate for myself seeing as the doctors up here don’t know anything or think that what’s wrong with me is a light switch I can just shut off any time and be all better.

I commend your for finally finding those who will listen and that you are seeking an getting the treatment you deserve. As a lot of us know as you said this disease (FND/FMD) if not treated does get worse over time.

I wanted to share my story an thank you for sharing yours.

By: Bonnie Chismar

Bonnie Chismar — Mon, 27 Mar 2023 07:52:47 +0000

My husband has Parkinson’s disease, he is about 63 years old it was diagnosed 2 years ago. It was getting more difficult to live for him, because of stiff muscles he couldn’t even move. Mirapex and levodopa medicines were given, but didn’t give much relief. He couldn’t eat food without choking. I thought this might be the last stage and the medications he was given did not help at all, so I started to do alot of research on Ayurveda treatments, I was introduced to Health Natural Centre and their Parkinson’s Ayurveda Protocol. He started on the Ayurveda Treatment last year, his symptoms gradually diminished including his vocal cord spasm, Muscle Weakness, Tremors and Difficulty with swallowing. Reach them at natural herbs centre . c om , he is getting active again since starting this treatment, he is able to walk again ( down the street and back ) he has also resumed exercising to strengthen muscles!! God Bless all PD Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.

By: Jan Boss

Jan Boss — Sat, 25 Mar 2023 11:44:06 +0000

This is good news and heartbreaking at the same time. I can’t imagine the anger you must be feeling right now. The “Health Care” system is failing so many people right now and if you don’t fight for yourself you don’t have a chance . Praying that time and correct treatment will bring you to a better place.

By: Steven Wallen

Steven Wallen — Fri, 24 Mar 2023 13:42:00 +0000

Thank you for taking the time to share this with us all. You transparency and honesty were heart felt as I read your message.
My first onset of FND-FMD and PNES was in February of 99. I have been through much of the same things you share. After being hospitalized in the fall of 2017, my doctors finally sent me to Stanford for a more in-depth diagnosis and I finally got it. I left Stanford with a diagnosis and knowledge of treatment to regain normal gait function and also my cognitive abilities. Leaving Stanford filled with hope was quickly replaced with anger for me and my wife as we were told by my neurologist at kaiser permanente that they will not send me outside of network for any of these “proven methods” of treatment. So basically “SHAKE IT OFF” !
It’s so easy to give up the fight. I have many times. Reading things like this article is like the bell has rang after another round were I was just pummeled and I go to my corner to hear my trainer encourage me to take the fight one round at a time and that there is another way to beat my opponent. “Start hitting the body” “quick jabs”.
Thank you again for this story for those of us who need it after the bell has rang and feel like there is no use in fighting our opponents even when we didn’t want to fight in the first place.
“Ding-Ding Next Round” Let’s go!

By: Crissy Morgan

Crissy Morgan — Fri, 24 Mar 2023 09:09:53 +0000

Thank you for sharing your story. I have FND as well and if you ever need or want to talk please reach out. It a long road but you can make improvements and you will I have Faith with God all things are possible. Very happy for you that you have received the correct diagnosis and can start to heal and move forward.

By: Janine Grose

Janine Grose — Thu, 23 Mar 2023 21:38:57 +0000

HAPPY you got really good people involved in your treatment. I am now wishing I had chosen Cleveland instead of Chicago for my surgery consult!!
Good luck and best wishes. Enjoy reading your blog. Keep up the wonderful attitude of helping others with the symptoms and differentiating the diseases!!

By: Melissa Livingston

Melissa Livingston — Thu, 23 Mar 2023 20:08:06 +0000

As always you show a light within the tress perspective. I’ve hope that you will heal from this – emotionally and physically.

You are an amazing and dedicated advocate and an obviously humble and exceedingly kind person. Thank you for using these traits to enlighten all of us. ♥️

If ever I can lend an ear or otherwise, you know where to find me.

Xoxo
-Mel

By: Heather Dittrich

Heather Dittrich — Thu, 23 Mar 2023 16:26:53 +0000

Oh Nikki! I’m so happy for you and so angry with you. I’m happy that you have a new team, with new answers and new hope. I’m angry at the way you have been treated by the health care system and the wasted years of missed treatment. We will continue to carry you in our thoughts and prayers. ❤️

By: Sheila Essenberg

Sheila Essenberg — Thu, 23 Mar 2023 15:45:04 +0000

Wow!!! May God continue to be with you, strengthen you, and be your guide as you work through this journey for yourself and others! So proud of you and I’m waiting for your book to be written!❤️