So I bring you news on medications that are currently helping me with my motor function loss, and helping remove the pain slowly. My Dr recently percribed me Presidone. It works as an anti-inflammatory med within the nervous system. Used for things like arthitis, MS, gout, etc etc. All the scans I had didn't see to show, from what I learned. So my new Dr took all this information and decided to do a test run with me on these meds.
That being said, this is my first day taking my dosage of the medication.... And this is the first day in nearly a year that I have taken normal steps.... The first day I have been able to grip anything with my right hand. It has truly changed my life just after one day.
Yes, my muscles are still pretty stiff. They hurt after being stuck for nearly 7 months. But to be able to not be able to grip a thing in the morning to 2 hours later move my hand and hold things... I was blown away.
If anybody can, find a new Dr and see if they can get a prescription of Persidone. It literally is a life saving medication, for me.
If anybody has questions on how the medication is making me feel, or what I did to tell my new Dr during my last visit, feel free to comment. I want to be here and help anyways I can. People with FND deserve a true diagnosis and Drs that are actively trying to help. If you have been suffering, please like I say on my last few posts, don't give up. We as a community will rise and make sure each and every human being is treated with the upmost and best care. To live a life that was the old norm, not the new one.
Thank you all for your ears, for the information, help, and everything. Each and every person here is an incredible person.
I appreciate you for sharing what medicine has helped you. I'm so glad to hear that something has finally helped your pain in a short amount of time and you've waited so long to find that one thing to help at least a little bit. I've been scared to try medicine because any that are prescribed to me I always have the worst side effects and allergic reactions to them, I've tried at least five different ones for different symptoms and I always get the worst symptoms. Thank you for suggesting this medicine though because I struggle with inflammation and motor function problems so I will look into this medicine. I know you are definitely helping others on here. I agree that everyone deserves a true diagnosis and the treatment they need, and we all deserve to be listened to because our symptoms are real and we are all suffering, we just have to find things to help our own symptoms because we are all different. But on here, it feels like we all go through similar things and know how to help eachother with our struggles. So thank you for sharing, and don't stop treating your symptoms the way that you know helps them. It will get better. You are a great person. Don't give up.
Thank you very much. I do my best to share the information I have to try and help others. I was lucky to find a Dr that is very realistic and I told him how horrible my life has been, how much I lost, and what really happens to people that are diagnosed with FND and are set aside. After this, he was quiet for several minutes. He truly understood the level of severity that FND is and also agreed with me that maybe we don't have the technology to properly diagnose it or possibly get it confused with other issues.
This is the first medication I have ever taken. Nobody else has ever given me anything. They all said "Eh not a medical problem. That sucks, go to therapy." And I hated that answer because it wasn't helping me, at all. Full stop. So persidone from my reading and research, it helps treat inflammation within the nervous system. Things like arthritis, MS, gout, etc etc. Also helps with other diseases like lupus, skin diseases, again so on and so forth.
This being said, side effects for this medication like most medications ending I'm sone, have side effects like decrease in body healing cuts, immune system lowering (this to try and treat autoimmunes causing the inflammation) decrease in protein. Stuff like this.
The way I am currently countering this, increased my vegetable diet even more. Slightly increased protein to eating about 8oz of protein a day.(I eat chicken, beef or pork, simply due to cost and its easy to prepare) and also currently I'm blessed with the ability to walk again, I have taken multiple half mile walks a day, forced myself to stand for a several minutes at a time. As well as doing a few squats, calf lifts, etc. These all in light amounts, nothing harsh. My hand I can grip stuff again, so I'm constantly gripping things, slowly lifting things, doing a few push-ups a day. Also, stretching multiple times a day to make sure my muscles are able to accept the water I drink and the nutrients it receives so it can repair itself after months of loss. This next week I plan on going swimming for a bit to allow the buoyancy of the water to helping balance my weight as I work my legs and my arm.
This might seem like a lot, and yes I am probably over doing it due to excitement I can move again. But once on the medication it lifted everything up and made it possible. Yes it does have the side effects, just write down goals for each day, keep up communication with your Dr, and don't give up my friend.
Truly VR, you are doing incredible. I know we are both young and have had a hard time with this. If you need me my friend, I will always be here.
That's amazing to hear that you are doing great again. I agree it when doctors dismiss people like us but I'm glad you expressed what it's like to go through it because we really do lose a lot in our lives and it's hard to accept how it is during all of these changes. Thank you for listing what you're doing to help your symptoms and side effects. I'm glad that you are working out and training your body to be better again.
I have been doing yoga and light exercises recently and it's been helping a lot with most of my symptoms, I also over work my body sometimes when I work out but that's also because I'm excited and know that my body is improving with what I'm doing for it. I hope your symptoms will start to lighten up more and stay that way so you can still feel excitement and proud.
Aww thank you very much for saying that. We all need motivation and encouragement especially in these times.
I appreciate you very much, I can't wait to hear from you again and know how you're doing with everything once again.
You got this my friend, you are an inspiration and a help to me and others.
What you are doing, sounds absolutely right. Yoga and light exercise is perfect. Along with balance of food, it sounds like a good combination to get things rolling.
I have said for a long time, if we are doing things that aren't drugs or ruining other people's lives. Then we should keep doing this. Keep pushing, keep working towards the goals, and help find that perfect balance for your body.
You will always find updates on my progress. I try to share the big milestones on here to help others. So they can maybe ask their Dr for better information, maybe medication, or anything they can alter in their home life to help them reach the old norm.
I'm also a firm believer in breaking down the reality of a situation to a Dr. I strongly believe Dr's forget that the decisions they make for a patient can directly effect their life and well being. To this, if I end up having another disease/disorder. I used to want to sue for Mal practice. But as more time passes, I really just want to reach out to the hospital explain how they messed up, and have my medical bills cleared. And to also send a letter to each Dr that dude horribly stating what I actually have, how my life was, and reminding them that they should do their absolute best to step out of their good life and sit in the shoes or people who had a good life but lost it all due to being improperly diagnosed. I have time to think on this more. Either way, I want my old Dr's to know how incorrect they were, how they truly need to do better, and when a patient opens their mouth and states what they are losing. To listen with their ears not with their mouth.
Thank you, I'm glad to hear that I'm on the right path. I totally agree to keep doing what you're doing if it's helpful for you. Good I'll be glad to hear more from you about your progress.I'm so glad that you think the same way I do about doctors because we really do need more doctors that are willing to listen to us and be genuine about everything we go through and truly care about figuring it out with us. So many doctors that I've seen were also horrible to me about my situation and it's just frustrating and I almost gave up on trying to figure out my health because of how they treated me and my health.
You are a great person and I'm glad we think similarly about this.
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