Hi, All.

[Misstea]

I'm new here but my diagnosis is not new. It's been almost two years since I was diagnosed with conversion disorder (which a neurologist told me to just call FND) but I still have not fully accepted it. I'm trying to explore all avenues I can as I seem to have to autoimmune issues (arthritis) and I also have aphasia (I never had a stroke). So far, I've come back to the same diagnosis but I have one more specialist to see before I resign myself to having this condition.

To be honest, I still don't understand a lot about FND. Is it really rare? Is it possible it's the cause of my aphasia and not something else? Why do I have to struggle with being cold and why does my being cold affect my walking (Winter as become worse for me)? I just want to know if I have to treat this like I have to treat my aphasia or if I'm going to get worse no matter what I do.

[kev60]

hi, as far as i can tell FND is the second most common neurological condition after migraine . i have suffered with this since 2018 but only diagnosed end of 2019(18 months) , i am slightly different with functional gait problems(often walk into walls) and memory loss and i lose words and forget conversations while having them. As far as i am aware Aphasia is damage or injury to the left side of the brain. FND as they discribe it is the hardware is ok(body) its a problem with the software (nervous system) as in my case i could not walk properly( looked like i was drunk) but i had neurophysio and my walking improved , i still wobble but not as much. i have been told that some people make a good recovery and some just partial (i think i am in the second group). i had so many tests in that first 18 months mri,ct scans pet scans x'rays and over 100 blood tests these just found emphasema and GORD and severe detiriation of the spine, there is no test for FND , but it is real . hope you get the answers your looking for . goodd luck kevin

[Misstea in reply to kev60]

Thanks for replying. The aphasia thing is weird but the diagnosis is legit enough (I've been evaluated by speech pathologists). My spelling abilities aren't what they used to be and I cannot read out loud. My speech can tank on some days to where it becomes a chore. My walking is weirder. It acts up more when I'm cold and I can never pin down when I will need my cane or not. 😆

[SNOW10 in reply to Misstea]

I can relate on the spelling. I notice the difference in my spelling in 2019. My speech changes often and sometimes it sounds like I have terret. The walking does become a challenge from time to time. I notice if I walk backwards or run I walking smothered or running smooth but cant do either all the time.

[Van604]

Hi. It's not surprising that you don't understand FND - nobody does, including doctors/researchers. Be especially aware of the ones who insist they DO know exactly what it is, because they tend to be the most clueless. It's a medical mystery and it remains so because we don't know enough about how the brain functions. They have a pretty good idea of the structure of the brain, so they understand stuff like strokes, tumours, MS etc. because they have the right scanners to be able to see them. Hopefully, in the future they will have the right scanners to see FND in the brain. For now, probably the most helpful concept is the hardware/software thing. There's nothing wrong with the hardware, but the software needs reprogramming. There's a site called FND Recovery, where a person with FND figured out some useful strategies. FND Portal is good too.

[Misstea in reply to Van604]

Thank you for the site recommendation. I'm bookmarking it on my browsers.

[SNOW10]

Check out FNDHOPE.ORG. You may find many of your answers there also. We all are all if you need to vent. Anytime something come to mind post away.

[Misstea in reply to SNOW10]

I try not to vent. If I do it the wrong way, my head will suffer for it. Thank you for the advice.

[SNOW10 in reply to Misstea]

I understand, but the body has to release that negative energy we all endure. FND is no joke, so when its time I come here and talk to my fellow FNDers , it beats seeing a neuropsychastrist or psychologist for me. Having to re train my brain daily is a huge task.

[Misstea in reply to SNOW10]

I read your bio. I'm in less of a position to complain, save migraines.

[SNOW10 in reply to Misstea]

I use to be there no longer am I doing that to myself. I use to just hold it all and hasn't gotten me anywhere bottling it all up. Was raise to suck everything up and keep pushing. Still had migraines doing that. Dont get me wrong I dont express everything to everyone because they wont understand and will look at it like I'm complaining, so to others depending who ask and what asked is what I will say. I know when it is worth given a short version vs a long vs versus. I hope bio made sense to you and also brought laughter. I tend to mess up sometimes when writing what I'm trying to say lol.

[Misstea in reply to SNOW10]

I understood it fine.

[Misunderstood2021]

Hi. My problem with FND is my walking. I suppose I’m lucky because it’s just my left leg that isn’t right, So my FND is mild compared to a lot of people. However it’s a huge challenge every day trying to go about my day & work full time & try to live a normal life. Recently my cousin introduced me to a Healy device & I’m wondering if any of you have ever heard of or tried one. It’s very difficult for me to explain what it is but it’s a small portable device that’s connected to a smart or I phone & it sends frequencies around your body which people seem to swear by for everything from rashes to mental health problems. I bought one on my cousins recommendation. They aren’t cheap, €1500 here in Ireland but I know they are sold worldwide. I have it now for a few weeks & paid €68 extra last week for a personalised program for treating FND. I am still on my 1st week so can’t say whether it’s the miracle we are all looking for but I will keep you all updated if I think it has helped. Anyone interested can google the Healy device. I don’t know if it’s another gimmick or not but I suppose for me at least where there is hope I will take it to have a normal life back.Thanks for reading my long message

[Misstea in reply to Misunderstood2021]

Thanks for the suggestion. I just looked into it and while it looks promising, I have to question the spiritual nature of Healy since they state the program was created by "conscious and spiritual people." There are some things I'm less inclined to try in my journey to get better, especially if there is a real lack of study on the effectiveness of the treatment.

[SNOW10 in reply to Misstea]

I agree with the spiritual side of FND. I'm really caution about who I tell though. But I believe this is physical and spiritual. 😉