Neurologists best for FND

[VR053]

Hey guys I've been needing to be diagnosed with FND more now because it's been driving me crazy not being diagnosed so people don't think it's all in my head or I'm self diagnosing. If you could then please give me recommendations of specialists that helped you with FND, in Utah please. I just need help finding a good doctor. Thank you so much for your help.

[Misstea]

I'm sorry. I'm in NY and some doctors here can be just as unhelpful. Besides looking for Neurologists who specialize in functional neurology or who study the neurons, I'm not sure how to help you out.

[VR053 in reply to Misstea]

Alright well thank you for responding I appreciate it. I wish you the best of luck with what you have.

[Numma100 in reply to Misstea]

I am in NY as well not sure whereabouts your at but I can honestly say true praise for my doctor Carine Maurer , she's an advocate and leader in this field and has truly helped me beyond what I thought was possible after 3 years of being tossed around she has been everything to my treatment the last 4 years now ! She's part of Stony Brook Medicine group , amazing with her resources. Knowing what I went through to find her , I always wish everyone could find there own Dr Maurer. Much love to you all !

[VR053 in reply to Numma100]

Oh well I'm so glad you found a good doctor I'm glad to hear it! Thank you for responding, hopefully all of us will find someone just as good.

[Misstea in reply to Numma100]

Oh Wow. I didn't think there was a doctor within the area that is an advocate. I'm fairly certain she'd be out of network for me to pick her brain. though.

[Hidden]

Hey VR,

Call me unappreciated or stupid. But I promise you, you don't want an FND diagnosis. It's just as bad as your post is. Doctors will look at you the exact same.

How I know this? I'm 26 years old and because of Doctors in Ohio not knowing what to look for or do, I am almost full body paralyzed. I'm waiting to undergo brain surgery. That is how bad I was screwed over.

How bad was the negligence? Really bad. To the degree I had to learn all about MS to look a Dr that has 20+ years of experience with MS.. Look that Dr square in the eyes saying I have MS, just to get treatment. Just to be heard. It wasn't until literally 3 months later did they find what was wrong.

Maybe I am seeing this the wrong way. My experience with FND misdiagnosed has caused such damage on my mental health as well as physical health, I don't trust a single Dr. Like the PTSD that I have from Doctors not giving a fuck about me as I slowly crippled away.

That all said, I'm in Houston Texas at UThealth in the medical center. It took some of the countries best Nuerologists to figure out what is wrong with me.

I'm not a Dr, but I'm under the strong belief FND doesn't last for more than a few weeks. If you are having symptoms that are lasting months, God forbid a year. I would strongly suggest looking for treatment.

I say this not just with my story but various people I have spoken to hear. The worst case, that brings me to tears... Is a gentleman on this sight went 15 years. Literally can't speak, can't move, can't clean himself. All by the age or 43. A doctor finally pulled his head out of his own ass and thought "Well I guess we can do another MRI." Guess what was found? A 13mm long lesion on his brain stem. Because this poor gentleman is part of a group of people who don't get lesions for years after having MS. Since we was diagnosed with FND all those years before, he was laughed at, told how stupid he was, told to go back to therapy because he is wasting their time. The poor man's wife lost her job because she has to take care of him. He will never live a quality life.

I don't say this to scare you or anybody. I also don't know your situation, but heed my warning, you don't want an FND diagnosis.

Best,

Matt

[VR053 in reply to Hidden]

I'm so sorry about that. I know most doctors can be terrible and make things worse or just shove them away I have experienced it. Yes I have had these symptoms for almost two years and I've been figuring out what helps me best since I haven't been able to go to the doctor and I'm afraid of what will happen because of my last experience. I'm so sorry how awful it's been for you. And that is a terrible case, that's why I wish there were better doctors all around the world that can be accessible to everyone and do everything they can to figure it out and not give up or make the person think they're making it up. Thank you for telling me about this. Again I am sorry. I wish you the best from now on and I know you're doing your best to help others so thank you.

[Hidden in reply to VR053]

VR,

It's okay. I'm I good hands now.

I'm more concerned with your situation and others.

I made a post a couple days ago. Take a read and use it on your next appointments. I will advocate for you and anybody who has a trash Doctor.

As I've learned through this process, neurologists are some of the most strict Doctors and they don't listen well. My post can either help give you ideas or tell a doctor off for you. I will do my best in any situation for anybody with this absolutely horrid neurological problems.

Whatever you decid, please know I will stand by and help.

Best,

Matt

[VR053 in reply to Hidden]

Good I'm so glad to hear it. Oh ok I will look at that, thank you so much for wanting to help everyone on here. Yeah that makes sense, I've seen how strict they are and don't listen. Thank you so much it means a lot

[NEADtoraiseawareness]

hi VR,

Sorry to hear you are struggling.

Have you checked out this website/facility?…

healthcare.utah.edu/neurosc...

Which facilities have you been to in Utah or around that haven’t helped you?

Sending healing wishes and hugs 🫂

[NEADtoraiseawareness]

theneuroclinic.org/ or this place is in Utah I think too. Just found them on the web, but I don’t know where you have tried already and had no luck.

[VR053 in reply to NEADtoraiseawareness]

Thank you so much for looking for me and researching it means a lot. I have been to intermountain healthcare and the first one you sent me. Thank you for helping though I really appreciate it. I will look into it more!

[NEADtoraiseawareness]

You’re welcome. I’m in the UK so I don’t know what these facilities are like but you could have a look the the neuro clinic as they are specialised and should be able to help. I’ve just seen a neurologist last week who diagnosed me within 30minutes of talking to me and watching a video of my attacks, but I pressed for an mri and an eeg which he told me they will laugh at him for even requesting them but he will on my demand, I said well if they find it funny then they can laugh but I don’t find this situation funny in the least bit! Doctors make mistakes as all humans do, he was also wanting me out the room for his next consultation which is fine, but don’t rush my diagnosis just because you have other patients, what’s the point in having any of you are going to cut corners and potential miss serious things? I’m no neurologist and I do respect their opinions and he is probably bang on with his diagnosis but I have gone through to use private health care, so if I want my own case working up thoroughly then I should be allowed that. I’m just saying this because we do have to stand up for ourselves and say when we are concerned about the course of action they are taking, it’s our right as their patient. So make sure you use your voice too.

[VR053 in reply to NEADtoraiseawareness]

Ok thank you so much. Oh wow, yeah I'm glad you spoke up for yourself because they really could miss serious things if they just move on and don't really dig into it. Like the last time I saw a neurologist, my best friend's mom saw him too and anybody he would talk to her would tell them that they just have fibromyalgia and then he would push them out of the room for the next one and I didn't mean to go to him but I got him anyways and I knew it was gonna happen and sure enough he said it looks like you have fibromyalgia so go see this specialist to diagnose you with it and so we told him about my other condition which is POTS to see if he could help us with that because it said he knew a lot about that condition too but when we told him he said he doesn't believe in POTS and he doesn't specialize in it mainly because he thinks it has to do with psychiatric problems which made me and my mom even more mad so my mom asked him if he could at least do lab tests and at first he refused but then he finally did and yeah it seems like he just wanted us out of there because he would rush us and not want any questions but nothing came back in the lab tests anyways. I just wish he was nicer and more patient and would actually look into it more. And at that time I had really bad tics so we asked him about that and he had no idea what it could be and he just shrugged everything off that we asked him about. I agree that we have to stand up for ourselves especially if it's about our own health. I'm glad you brought that up and told us about your experience thank you.

[BlueSkies1]

hi there,

I am from Canada and I hired a Neuro psychologist to diagnose my FND. I just had to do a questionnaire which really pointed to conversion disorder and so it did not even cost that much to get the diagnosis. Here psychiatrists can also diagnose FND. For me, knowing what I had was very important. The same neuropsychologist that diagnosed me was also hugely helpful in assisting many of my symptoms to go away. I then tried also a more traditional counsellor to help me go through some childhood trauma. After being bedridden for months, with nerve tics, losing the ability to speak ant times, and many many other symptoms, I am so happy to say that I almost have my normal life back. For me, the diagnosis was the beginning of getting better. I hope this helps! Good luck to you.

[Nevergiveup555 in reply to BlueSkies1]

It was wonderful to read your positive story. I have so many symptoms and I find it difficult to believe they can all be attributed to FND. I also am from Canada. (Edmonton, Alberta) Per chance, is the great team that helped you, anywhere near my area?

[BlueSkies1 in reply to Nevergiveup555]

Hi again,

Actually, Alberta is where the neuropsychologist is who helped me! (Even though I am from BC.). His name is Dr. Vinay Bharadia and he lives in Calgary. He really understands FND snd there can be so many symptoms….it is hard to believe they are possible.

I also worked with counsellor in BC - Tamara Sjoldgen. She is trained in a special fit of psychodynamic counselling for conversion disorder. I found that the clinical approach of Vinay followed by the introspective approach of Tamara was helpful. She is private practice. If there is any way you can get the money to get help, do it as it will change your life.

Some amazing help is in Victoria BC through Zoom from a company called Studio Be (there are a few companies with this name- you want the one studiobe.ca). Two women run it and you can buy a package from them that is sessions with an occupational therapist and sessions with a meditation specialist. They have done a lot of work in this area in hospitals and with a psychiatrist who specializes in FND and they really know this weird illness.

Please feel free to reach out to me in the future!

Kareen

[VR053 in reply to BlueSkies1]

Thank you so much for your story!! I'm glad to hear that it is helping you get better. I also agree that being diagnosed with conditions you have can help your healing journey and understanding of yourself so thank you for that!!