FND in the UK

[crystallinecanine]

Just a brief thought I’ve always had... why are there so many people in the UK for this disorder? There seems to be many people in this forum from the UK and I’m wondering, is FND a common diagnosis there or is there just more FND awareness than here in America?

[Regaining-control]

I’m from the wonderful world of Aus 🇦🇺 and so many seem to be unable to get help here... there was pretty much one main public clinic for the whole of Australia and it closed with a three hundred plus wait list. So many seem to have no help when diagnosed as hospitals just don’t understand FND and treat it as a mental problem... I definitely don’t think we have the same awareness that the UK does. I was fortunate that I had access to a rehab team specialising in FND but I was only allowed that for one 8 week block and since have had to figure things out on my own. I read about the clinics you have and wish we had more like that but I understand everyone still faces their challenges in their own country too. I can’t wait for us to have the same respect and treatment as those diagnosed with say MS or Parkinson’s etc... it is so hard when there are so many unknowns within the brain.

[Hidden]

Elsewhere in Europe they mostly have no idea about it at all I have the impression. Even doctors who do, and are empathetic, have to lie so that their hapless patients get some help. For example, by calling IT by other names.

[Momofson]

It’s becoming a popular disorder in America too. Many times when a doctor doesn’t know what is wrong with you, they say you have FND. Don’t accept this without question! There is so much they don’t know yet and so much new research into antibodies that cause these illnesses, but so many doctors don’t keep up with the newest research. You have to be your own advocate! Don’t settle for a diagnosis that has very little, if any, hope!

Make sure you have had the antibodies testing for things like autoimmune encephalitis, dysauntomia etc. In America, this test is done at Mayo Clinic. Any doctor can have your blood drawn and sent to the Mayo Clinic in Rochester, Minnesota. Also, there is the Lumbar Puncture to test for things going wrong in your brain, like encephalitis or other diseases. MRI with contrast to check for T 2 intensities. These tests can be negative even when you are very sick but if they find something, they can get you treatment! Don’t stop searching, FND is a label many doctors use when they just don’t know and don’t want to keep looking!

[Hidden]

The reason why is because it's not money making! Clinics are supposed to help the sick but if you replace clinic with business that it makes more sense. Here in the USA there are only one or two of FND rehabs. Then for a different name theres a psychiatry clinic here in DFW Texas. Why? Because the theoretical approach and belief is different the psychological approach and name is NEAD non epileptic attack disorder. Here I was told from NEAD that its a neuro disorder that is based on emotional reactions which I find very tough to do and practice........ Then FND is thought behind it as a physical approach, that it has to deal with the nervous system..... It really is another way of both mental health and physical health saying we don't know!

The reason why there are more clinics out in the UK is because theyve figured out more than both AUS and the US. I speak for the US. The USA gets money from either insurance and/or the patient. Some places take insurance and others dont! I went to a chiropractor and that was 240 US 375 Aus dollars and 175 POUNDS (I did the math for you). Just for one visit. This will be my 3rd. Insurance says oh thats specialty we dont cover that. Oh that practice isnt in our network we dont cover that. SInce this disorder is all kinds of things, theres no right way of treament approach, which means theres no way to lay out the right treatment plan. Think of us humans as means of production. Like other things get it in look at it, treat it, get it out. Hopsitals and clincs are the same as business' theyll never tell you that.

Thats why there isnt many clinics. Besides its easier for them to suggest all kinds of things since they didnt wake up one day and fall to the ground unable to walk. When we have a rich person get sick of FND like an actor we'll get some attention but till then guys (mates) cheers we have our own club enjoying each others company

[Regaining-control in reply to Hidden]

You raise some very valid points... I believe there is still so much confusion with this and as you and bobby wrote, it is a diagnosis for; we don’t know! You make me very grateful that we have a good health system although it is now to the point to find any info or possible alternative diagnosis out we need to pay for private. I don’t wish this on anyone but definitely need some high profile case to bring awareness to the importance of long term help, as there is no quick fix which means no pharmaceutical companies money

[Hidden in reply to Regaining-control]

Pretty much how is the health system in your country? Yes I'll be going to my 3rd visit with a hands on person we'll see what he does.

My foot orthotic have helped my walking. So my theory has proven itself. Since the position sense of my feet are out of whack my brain doesnt know how how to walk and pose. The orthotics help because it keeps my feet stable. In essence tricking my brain.

Even though this man is private pay I got what I paid for so please dont feel discouraged if you need to spend the coin

[Regaining-control in reply to Hidden]

We spend, don’t worry 😉... hoping in the next few weeks to go back to a private specialist who deals with the unknown, I had tests done for Lyme last time and also omega levels which surprisingly the hospital doesn’t test for... the omega was critically low...

Our health system is free for most, in my state ambulance etc is no cost, and you have the option for private health insurance but working in a pain clinic I would never bother with this as I see people pay more than get rebates. If you earn a certain amount you do get penalised and have to pay during each tax year but we put money aside so that can pay for kids dental etc...

I’m really pleased your orthotics are helping and it is just finding that “thing” that helps and works!!!! I use a theraband? That I use for leg strengthening exercises to stop my leg giving way when walking. Looks silly tied around table leg but it works 😌 and on my tired days it is all chair based. I hope you have a wonderful day,or evening

[Hidden in reply to Regaining-control]

Yah I could see that the health system for developed countries is where u still have to pay.

Ambulance here isnt free in any state. In ur amount it's around 790 pounds! People in labor or have something wrong would choose to drive lol. Yes orthotics work and your theraband eh how does that work?

[Regaining-control in reply to Hidden]

I count ourselves lucky then! Sad when basic rights like healthcare are so overpriced, my theraband is s stretchy almost rubber like length which I can tie around either chair leg or whatever to strengthen the leg muscles to not give out... google “sit to stand with theraband “ there are some in YouTube mine isn’t full circle like some so that I can tie it to awkward places if that makes sense...

I’m on cloud nine ☁️ at the moment as two weeks ago my doctor made a referral to neurologist as he had discharged me for another anyway the original one I was told last week could be s 12 month wait and they rang today, I’m in on Tuesday... so happy but also a bit worried as you don’t normally get in so quick unless they’re worried but hey I need this and it is free so really really happy. Let me know if you or anybody else tries out the theraband

[Hidden in reply to Regaining-control]

ok yah I saw the picture on google, ive used it before when I worked out on normal basis, that little thing does the trick. My therapy consists of an 8 hour dayw orking on diesels plenty of sit stand kneel bend. As tough as you could imagine with people like us its probably the best I could get. I mean come on 40 hours every week is plenty of it. lol

Im very happy you got in so quick since its free. Lol yah you kidding me, with insurance my copay could be from 35 to 40 lb and up just for the visit. And I have to work for insurance. Government insurance pays but you'd need to be declared disabled, not work, or be too poor to do anything according to our dumb government. To be declared disabled I would have to not work for at least a year, have to get a disability lawyer to go to court to fight for it, and all that costs money. Why in the world would somebody go through all that?

What would you be looking for at a neurologist do they do things different than the USA, most likely. Are you experiencing things other than FND symptoms or deny this condition?

[Regaining-control in reply to Hidden]

Hey, I tell you what, working like that you get the kneel bend action and a gym workout ( plus if you are like my hubby, the washing machine gets a workout too 😉)

It’s not fair that you have to go through so much to get any benefits etc from government... I don’t get any financial assistance as own my own home but whilst I can still work it’s ok... 15 hours better than nothing. To not work a year to get assistance you could end up homeless-that sucks. We have the NDIS in Australia which isn’t based on financial situation but haven’t looked into that as whilst still able to do things.

Neurologist on Tuesday I’m hoping to learn about the shakes and what they are

Normally my symptoms ease after a couple months but these have been happening since JAn. I was originally diagnosed MS so we just want to make sure every avenue is looked at and anything I can do to help myself. The shakes are more aggressive and even little things triggering them. I don’t disagree with FND diagnosis, just don’t want to “leave any stone unturned “either. I know I can’t get my old life back but boy heck I don’t want to give up hope of finding why this started either

My dr doesn’t really know much on FND so hard to have someone monitor your symptoms and this is such an unknown

Well I hope you are still awake after reading all this ha ha😴

[Hidden in reply to Regaining-control]

Well ok then yah I wasn't awake lol. I hope u get something taken care of at the neurologist. I go to the chiropractor now not seeking a miracle but more of understanding why things happen to me. He's been the only one to do what I do which was read and test the symptoms. That's why I wear the blue safety glasses. Also my orthotics help with my brain understanding where my feet are.

I've thought about more of getting tests done I just wouldn't know how long after so many dollars if the effort was worth it.

Ive watched THE DIS-SOCIATED DOCUMENTRY on YouTube and alot made sense. One in particular was having traumatic experiences in the past. Have u had any at all? Tell me how that goes with the shakes I want to learn more.

What is NDIS? And also which way does your toilet flush? Are near Brisbane for that rehab center?

[Regaining-control in reply to Hidden]

I’m in stitches laughing thinking of the simpsons tv show where bart rings Australia asking the toilet question and it took ages going to the outside toilet 😂😂 lucky times have changed...

I haven’t looked into the YouTube doco but will check it out. I had no trauma then or in past to indicate this. We were moving house in s few months but I had already packed boxes months earlier so don’t feel this contributed. I hate not knowing why this started but in the end that is the least of my worries. Hopefully tomorrow we will learn more but keep you updated

Oh and I am lucky we only live an hour from hospital for neurologist. I’m just north of Brisbane so that makes it a lot easier. I can drive to train station and make the journey as stress and driving a trigger but hubby take me tomorrow as often by time off train my walking dodgy and speech bad with all movement but I will get dropped off tomorrow. Sadly means I’ll be 2 hours early as leave at 5:30am but I have my sudoku 😉 and I need to have no disassociation

Nearly forgot... NDIS is short for national disability insurance scheme. Apparently it pays for things like aides and modifications, physio etc for those in need but I’m told it is really hard to qualify as lots of paperwork. I believe they give you funds based on your needs. It’s serviced through our taxes. I think I love our health system after hearing yours. Some people do pay but my doctor bulk bills (free ) and I have had most treatments including rehab, hospital, tests not charged so we can afford to pay privately for other specialists when we want. I think it works if my dr or neurologist refers through public not private system then it is free but there can be a lengthy wait which makes sense and if I’m not paying is reasonable but thankfully I only waited a week for tomorrow so for that I am so grateful.

Best go as Monday my worst work day of week and usually has me wrecked by the afternoon with a two day recovery ( plus it is winter and really cold... 14 degrees right now ha ha . ) lucky it will reach 22...

[Hidden in reply to Regaining-control]

Dang your health is way better! Too bad I'm not Aussie lol. Well at least you're near by and you got your hubby. That's the same with me walking, speech, movements, etc.

Stress, driving, and other things get my symptoms going too the eye movements slow down my movements and go away after 100 times but back up again once I stop. The sudoku helps and so does engaging into things like typing this entry and doing tasks. Today I'm going to clean, do laundry, do mrear brakes on my vehicle and build my "floor side tool box". Its so hard going up and down to service these trucks, I never want to get up or down once I made the transfer so I'm building a box that'll hold my tools so itll be a one time deal. My wife drives my to work and I just move the trucks in the yard so the danger level is really at 1 out of 10.

Yes please keep me posted. What work do you do? Is yours cool and interesting like mine?

[Regaining-control in reply to Hidden]

My neurologist was great. Best of all, she was on time!!!!

She diagnosed my shakes as myoclonic jerks/ seizures but no fix just time for these to decide to go. They kept happening whilst I was in there so at least she knew what was going on. Going to have a sleep study as she thinks sleep apnoea May play a part. Could be a wait time for free but if too long s wait we may pay privately... she is the first person to take my weight gain seriously so ordered heaps of bloods and go back within 3 months

I have put on heaps of weight, 15kg alone since hospital in September plus the rest and I am moving and walking now so we left the appointment positive and best of all I can still drive as long as I am safe and use commonsense which explained I do anyway

Your wife sounds fantastic driving you so that you can still get to work and do the things you need which is so important when if like me it feels so much has been taken from you. I love the idea of tools carrier. Anything to make life easier and most important stress free!!! I’m no way near as interesting, I ironically work admin for a pain clinic. It is a small business with only 6 of us including admin but they are so supportive and thankfully all the clients love my cheekiness so they covered the four months I had off snd changed everything to make it less stressful and easier for me to keep my job

Even bought me a Roomba home vacuum cleaner to take pressure off home jobs. They are fantastic and I think I big reason I didn’t get really depressed when diagnosed

Plus my hubby bought me 4 baby calves after hospital so I had to walk each day to bottle feed them and the cheeky things calm me when I’m having a bad day and make me smile. About 9 months old now...

Let me know how the toolbox goes

[Hidden in reply to Regaining-control]

Yes she's fantastic for doing that, I wouldn't be in a good place without her. I will be building this carrier today and I will let you know. And yes like you things have been taken away from me. My mobility, my ability just to sit and not have myoclonis or dystonia. It has taken my ability to hold onto a conversation without having an attack (no convulsive siezure). A lot has definitely changed.

My wife does admin for a health clinic too! Go figure, I think it's a part of natural gender behavior (not sexist) where you see men more of the heavy lifters the get-down-and-dirty people while women are more the carers and they do things like hospital work.

Im glad you got support I did small business work and it was great but many things I didnt get that I knew I was worth getting. So I went with a big company Ryder. Good thing too because yesterday they sent me home AAGAIN for medical leave pending approval from my doctor AAGAIN. Last time they took my sick time. This time theyre giving paid leave until I get approval. Seeming how its totally a surprise on me. Yup show up to work and boom yah we have to hold on your work..

And 14 degree in farenheit is 57 here in the USA. Where I live in the winter it can reach -3 celcius! LOL I guess down under means down under the hemisphere.

AND Cows are pretty cool theyll definitely will keep you busy.

I will keep you posted on my box.

[RobertWT in reply to Hidden]

If you ever hear that a celebrity has been diagnosed with FND, please let us know! Seriously, we (FND Hope) also recognise the impact that this would have and the forward impetus it would bring.

Robert at fndhope.org

Thanks

[bobbybobb]

FND is a bad explanation given by bad Doctors, who don't admit to saying, they don't know what's going on. That's it in a nutshell.