Recently diagnosed, is it possible to become symptom free?

[Margretliljan]

I'm in hospital and have been for the past month, recieving intense physiotherapy to try and get my body to work again. I struggle most with functional gait disorder, involuntary movements and spasms, my memory and attention span, fatigue, numbness and shooting pain on my right side, eye muscle spasms, light sensitivity, holding my own head and coordinating movements. My physio therapist keeps telling me I will become completely symptom free, but considering how long it's taking and how difficult and draining it is, I'm wondering if she's just saying that so I don't lose hope (also read about how health professionals should approach patients...) . I still haven't heard a success story and I'm wondering if any of you have any experience? And how do you manage it on daily basis if there are any lingering symptoms? Love, M xx

[wordDrag0n]

Wish I had something more positive to share. I'm 7 years out from onset. Living in an area that doesn't have any idea how to treat this. Going to head to the monthly meetings at Stanford soon.

[Margretliljan in reply to wordDrag0n]

Hope the meetings at Stanford help x

I live in England as an au pair and first got admitted to hospital there. The doctor's there had noooo idea and just said it was something post viral, potentially M.E. I.e. If it wasn't a tumour or MS or something other organic (they didn't even bug about getting a ct scan done so I discharged myself as I was tired of waiting for days). Luckily, I'm Icelandic and went back home to get help and was admitted straight away (was transported from the plane in an ambulance as I couldn't breath on the plane) and they knew straight away what it is and how to treat it after all the scans came back normal. It is difficult to approach medical professionals when no one has any idea on what it is or how to treat it.

[cathys20]

Oh how I love this question. While I think therapy may help many people, most often by learning techniques in handling the disorder, as well as relaxation techniques, and the like. I do not believe it can cure it. If it were as some professionals say and it is a conversion disorder we would in fact become symptom free. Because I have known people with conversion disorders, not being able to move their legs, two of them, once becoming aware of the reason it occurred and going through intense therapy were in fact cured. Which is the case most often with conversion disorders. And yet I have heard people being helped with therapy, never have I heard one being cured, and that cure lasting..Great question, would love to be incorrect with my opinion, but I do not believe true FMD can be cured by therapy. I too wish I had a more positive answer to the question.

[Margretliljan in reply to cathys20]

Yeah, I'm also a big sceptic on traditional talking therapy curing it. I have appointment with the hospital psychologist, but that's more to help me deal with the whole situation of going from fully functioning to needing help with everything in my daily life. The physiotherapy approach is way more promising as I've made great improvement from not being able to walk at all to being able to walk a bit without help (though it looks veeeeeery weird and robotic and I fall a lot). I'm just very curious if it ever becomes "normal". There's nothing in my situations that points to it being linked to something physiological, or at least nothing I'm aware of or any of the professionals that see me. I find the whole = between conversion disorder and FND very disturbing and in fact false. I'm glad there are others out there that think the same

[DNE92 Moderator FND Hope UK]

Hi

Sorry that I can't offer any real good advice except through my own experiences. I get daily seizures, followed by paralysis (which I don't know how long it is going to take for me to defreeze - I have been provided with a wheelchair but mostly it's used by my husband to haul me into and wheel me away to the car and sling me in so as to avoid unnecessary (and frequently humiliating visits to A&E where ignorance of our very rare disorder is so apparent among Consultants. You do wonder how they passed their medical exams, got to Consultant A&E level and don't keep themselves up to speed with all types of disorders because as they are in A&E anything could come their way. I'm a lawyer, let them know that, tell them basically that they are quite inadequate and slow witted. I'm genuinely a nice person but with health professionals now and the things they've said and done to me, it's gloves off mate. Hey ho. I'm a long distance road runner and that's how I get by daily. At the moment I use the gym to train as my husband and kids just worry themselves to death if I want to go off piste (which I really, really enjoy but kept taking seizures and looked like I had been attacked by some monster from another world and kept ending up in A&E). But I just say sod it, I'm going about my normal business to keep myself sane - I can't work for anyone else now so try to get on with my law consultancy basis but my hubbie says I need to come to terms with the fact that I wouldn't be able to do training courses, risk assessments etc for businesses in my legal specialism - hey imagine coming to my course and I go into a seizure - probably give all the paying attendees post traumatic stress who would then want to sue the arse of me. So I need to have another think - I do want to help people and I think my legal training could help so I've decided to look around to see if any charities might find me of use. But I've got quite a few FND symptoms and Complex Post Traumatic Stress Disorder so I can't do a full week's 48 hours let alone just a full 8 hour day. I was going to go to the gym despite feeling like death but it's shut so I have a good excuse. But not for tomorrow.

Cheers

Lou

[Leesaloo]

Hi margaretdijilan. I'm going into hospital, Gt Ormond Street at the end of November. I'm waiting for an email to let me know more about my stay. I was told at my assessment to be realistic about what I would like help with, I fight off at the moment my seizures but it then affects my whole body as if I have Parkinson's. I cannot stop the spasms constantly twitching my body and head. I too need to know wether I can be cured or do I get help to adjust to how I am. Hopefully the hospital will help me with this. My walking is just awful, dragging one leg, feet twisting in. My face to contorts and when really bad my eye shuts and the pain is horrendous. I guess no one really knows as we are all so different and even got to awful Illness differently. Mostly I've read we suffer with some of the same difficulties, the constant fatigue, aches, sleeping disorders, word loss, memory loss but all to different degrees. It's mind boggling how we suffer so differently but also a lot the same. Leesaloo 💕

[Margretliljan in reply to Leesaloo]

Wishing you luck on your hospital stay xx

It's indeed very confusing how we all suffer differently, and probably therefor it's so difficult for professionals to offer the right treatment + the fact there is so little research and material for them to learn from. It's kinda like they're just pointing blindly, hoping it works.

[Ljb123456]

Hi I was diagnosed last year with FND and non epeleptic seziures afters spending 5weeks in hospital, I also have fybromyalgia, osteoarthritis, diebetes, symptomatic dyographizam.depression ..I just feel there no ral answer to FNDr, and seem to be getting worse all the time . Today I am in so much pain from all these issues my legs are so heavy and painful but kind of numbers at Sanella time if that makes sense, and trying to walk with my crutches is getting harder daily .I forgot to mention A bulging disc in my library region, I actually do feel ill end up in a wheel chair permeable the way I feel .