Don't give up hope everybody

Hello everyone,

I know my last post consisted of a rant about FND. Today, I share positive news in another direction.

I recently had an MRI of my cervical spine.... It was found that I have lesions within lymph nodes, fatty hilum, and spinal cord compression due to the spine being compressed by these swelling lymph nodes and other glands in the region.

What I am saying to those that are suffering with extending "FND" like symptoms that Drs have pushed to the side. Keep pushing to finding new Drs. Keep pushing your Dr to try and run more scans and tests, different scans, and different tests. We are humans DESERVE proper treatment and health. It doesn't matter how old or young you are, we ALL deserve to be PROPERPLY looked at and treated.

I wish everybody the best and am here for anybody who has questions and need help to either build confidence to talk to their Dr, find a new Dr, or to ask your Dr what other things you can do. I am not a Dr or anybody in the medical industry. But I am a young man who has fight within me who strongly believes we all deserve to live happy, healthy, and as pain free as possible lives. For those that have had extended long term symptoms that act like FND and have had Drs not care whatsoever about them. Leave a comment on this post or message me and I will do my absolute best to help you. I know plenty of other people on this page will too. Stand by, reach out, and don't give up my friends. We will survive and make it. I promise.

Best,

Matt

[Bollyblossom]

Dear Mat, I’m happy for you. Thank you for sharing your story. It gives me hope and strength as I’m suffering from FND (it started with pins and needles and strange sensations in my shoulder blade and now it has expanded to my head, neck and ears). It’s getting harder and harder to function normally. It seems like there is more information available about a movement disorder than a sensory disorder which can be very incapacitating too. Regards, Bolly

[Hidden in reply to Bollyblossom]

Hello Bolly,

Hmmm, I'm hearing what you are saying. I'm curious if this has anything to due with the nerves that deal with balance, sight, etc. Has your Dr pushed for any MRI's of your brain, Cervical spine, or anything or that nature? Again, in my non official medical experience. That sounds like nerves that are being compressed. Like my issues, except mine deal more with lower extremities of the body and less of the face.

From my vast readings and study of FND, your symptoms do not exactly match either. Again, this is coming from a person who studies on their own time. Do not take what I'm saying for facts it's a matter of opinion.

Much like my symptoms, sure some symptoms made sense, but the prolonging problematic issues that arrived, it sounds like you are suffering from nerve compression as well.

Share your experience with your Dr or another neurologist. There's one thing for stress to be causing problems like ours. But like anybody I have spoken to, where their symptoms are drastically getting worse. The stress of the symptoms far exceeds the stress of our lives prior. This on combination of each symptom slowly getting worse with time.

All of this, combined with conversations that I have had with people, that have suffered with extreme symptoms for near a decade. These internet friends, have permanent damage due to their former Dr's not caring or trying. I myself might lose part/whole glands, and need spinal surgery from the damage my former Dr's caused on myself. Screwing up my entire life.

I hope this brings you hope and also helps give you personal examples of people who were in similar shoes as you. With a good team rallying behind you, doing some research, and pushing your Dr or finding another Dr, you will find relief. As I stated before, Medical Dr's are not trained nor fully understand the psychiatric hold or limits of FND. They put down those that are trained, studied, and did their best to understand FND. MD's seem to Trump any person who isn't an MD when it comes to FND without having the in depth knowledge of the disorder.

I wish you the best, here to help as always!

Best,

Matt

[Hidden in reply to Bollyblossom]

Hey Bolly,

I was running through and reading things that people have said. I am glad I did, because I was able to read what you said.

So this might help, I am not sure if you have heard this. What you are going through sounds like a form of cervical dystonia. This affects regions of the face, neck, and upper parts of the shoulders. This affect, having spoken with my Dr on it, can quite literally be activated from taking medication for years. I won't try to explain how for a number of reasons. Mostly it is very complicated, I don't fully understand it, and I don't want to leave you with false pretenses. I post and comment ideas that can help, not lead people down rabbit holes. Food for thought is good, but when I actually know of something that may help, I try to be very transparent with what I do and don't know.

If it is cervical dystonia, there are huge amounts of treatment for it. To the degree, you would only need a bowtox shot every 6 months or something, no meds for life, no major surgery. Truly the people I have spoken to that have cervical dystonia, it has changed their life!

I hope this helps!

Best,

Matt

[Nansea]

I am so glad you have an answer, and possibly a new direction. I finally have a Doc who is listening and finally got a consult to Mayo Clinic. After 4 general neurologists, 5 specialists, FND mentioned by one, another said not FND, the others just not sure? I just need confirmation, or a new direction as well. Hope they have an answer. I hope you finally get some help with your symptoms. I wish you all the best.

[Hidden]

I'm rooting for you Nansea,

I hope that the Dr that said not FND can lead the pack in proving it is not FND and you will get the treatment you deserve! Keep us posted and I wish you and everybody the best!

Best,

Matt

[CAP83]

Hey Matt! Glad to hear you finally got some real answers. I myself like a ton of others, have had a couple drs. speculate fnd and I absolutely refuse to believe it’s a real diagnosis. I’ve been through my fair share of hospitals, specialist, and pcps over the last 3 yrs and I’ve hit a dead end. The more I search for answers the more I feel defeated so for now I’ve given up. My luck I’ll be one of those people who gets diagnosed with something I knew I had all along ten years too late.

[Hidden in reply to CAP83]

Hey Cap,

I fully understand. I hope you will be top one day. I know it will all be okay. Take each day, day by day. That's exactly what I have to do. To this day I'm still in constant pain and having problems bit that doesn't make give up. You can do anything yiu dream, you just have to push.

Best,

Matt

[MONIREN]

I'm also in the given up mode, no more fight left. I've had all the MRI and brain scans. Neurologist was thinking my spinal cord restricted but neurosurgeon said no. Even though I'm numb to the extent of pain down left, they couldn't see how it was related to my degenerative spine. Finding everything harder, walking weird, slow speech, my gp has allowed me to stay on Levodopa for a bit longer but wearing off, so probably better off it. New neurologist, 3rd I'd seen, didn't offer any solutions. My husband needs my constant care, so takes my mind off my problems. I'm so happy for you and hopefully now you will find solutions and get back to living the best way possible. Take care. Moni

[Hidden in reply to MONIREN]

Hey Moni,

I'm sorry to hear all of what you said. I really am... It's one of the worst things to not get any help all the while the symptoms get worse.

Stay strong Moni. Know that you are doing the best you can, doing what you can, and making each day a better and better day just by being in your husband's life. In fact, reading what you said in the later half. You do still have fight. But you are saving it, building it, and being the caring person you are.

Again, stay strong Moni. You got this. I believe in you.

Best,

Matt

[cocoferraro]

DEAR MR HATTERI TOTALLY AGREE WITH EVERYTHING YOU SAY, YOU ARE AN INSPIRATION TO ALL WITH FND,

EXCUSE THE CAPS, TO DO WITH MY FND!!

YOU ARE VERY STRONG AND HAVE AN INNER STRENGTH,

I HAVE HAD FND FOR 10 YRS AND FEEL THE SAME AS YOU.

GOOD LUCK TO YOU AND THANK YOU FOR SHARING YOUR TIME WITH EVERYONE.

[Hidden in reply to cocoferraro]

Thank you Coco!

I do my best to help as I can and make sure everybody is on the right path.

You have had FND for 10 years, wow... I'm coming up on my 1st. You people that have had it for multiple years and still having strength bright me hope and h3lp fuel my strength for the future.

You stay strong Coco! You got this!

Best,

Matt

[cocoferraro in reply to Hidden]

MATT, YOU ARE BRILLIANT AFTER ONLY ONE YEAR, WISH THERE WERE MORE LIKE YOU, LOVE TO YOU AND YOURS, YOU COME ACCROSS AS A VERY STRONG PERSON, I KNOW THAT YOU WILL COPE AND BECOME AN EXTRAORINARY PERSON, SORRY ONCE AGAIN ABOUT THE CAPS!!!! ONE OF MY STRANGE CHANGES!!! BUT DOES NOT BOTHER ME ANYMORE.

TAKE CARE

JANEYXX

[Hidden in reply to cocoferraro]

Thank you Janey! That means a ton! I show my strength to help many others find their strength. We each have our journys and helping others achieve their goals is what I love to help with.

Life is good everyday. Just like the sun comes out everyday. Just sometimes, you have to move some clouds from your view.

Best,

Matt

[mermaid-680]

that is such good news

Well done for pushing

It can be so frustrating to keep pushing for answers via drs

It can be exhausting dealing with every day let alone bring your own advocate also