Hi guys update that i promised

[terry9griffins]

Well i officially give up if you have read my other posts you will know that since before lockdown i have waited for an appointment with an fnd specialists.

Well what a waste of my time that was the paper work tells you it should take around 1 and a half hours.

When in actual fact it lasted 20 minutes.

1 and a half hours makes you think that there might be some sort of physical examination.

Let me tell you there was none what so ever.

So i drove just over 40 mile for a 20 minute chat to be told nothing that i didnt know and when i asked if there was any exercises i could do other 5han what i am doing which is basically boxing fitness on the nintendo switch and darts to work on balance and arm strength which is my own routine i was told sounds like you know what youre doing. And when my partner asked specific questions they had no answers what so ever.

So by the sound of it there pissing in the dark just as much as i am.

In the end what they told me they could of told me over the phone.

For 2 years I've had this feeling of hope and now i have the feeling of being back to square 1 no scrap that im at about - 6 as the pain in my lower back and hips is getting worse i try to do the washing up just to help my fiancée out with the house work and it stuffs me up for literally the whole day and my sex life is none existent because of the pain i feel and to top it all off my gp doesn't want to up the dosage of my tramadol because i might get addicted to them never mind it looks as though im going to be on them for the rest of my life anyway.

I dont mean to scare anyone I know that there are doctors out there that are trying to make a breakthrough and that there are people on here that do seen to get the right help and i do wish you all the best.

Sending my love to you all. good luck xx

[MONIREN]

I'm so sorry that happened, it is frustrating, they are playing with your life. Pain can be debilitating, takes away from living, its not like you are asking for a pain free life, just a life of some sort. This should not happen at your stage of life with so much to give to your family. Its not that the general neurologist knows or not know, its just the uncaring attitude, if there was money in it for them, maybe it would charge things. So many things not known about the brain. Wish I could at least offer you hope. Thinking of you!! Moni

[pollybanana]

Which specialist centre did you go to? My neuro offered to send me to one but fof the moment I declined.

[Batty1]

It’s awful to wait for and appointment to get answers and solutions only to discover you have wasted your time and the doctor was useless…. Don’t give up find a different doctor.

[Jillymo]

Was this the same neuro who diagnosesd you with FND ?

You have diagnosed spinal abnormalities together with other ailments which come with many unpleasant symptoms. These symptoms are real and not in your head ! I have come to the conclusion the NHS should be renamed ( The No Hope Service )

Was FND discussed with you when diagnosed ? My neuro handed me a piece of paper and told me to google the condition. If I were you I would be asking for a second opinion from an expert who understands and has speciality training with regard to the conditiont. It sounds to me as if you have been fobbed off so that they do no further tests. You are entitled to a second opinion.

I would be asking what proof and what findings they have of their diagnosis. Basically your just another they have shifted off of their books. I no more have FND than a boil on my bum. Confront them, ask questions, demand answer's. I have long winded case open at present with Pals because the Neuro I saw was a complete ass. 🤬

Personally I think they are full of cr💩p.

virology.ws/2019/12/30/tria...

[terry9griffins]

Hi guys thankyou for your messages. Nice to know someone's listening

The specialist centre was the Barberry centre apparently specialising in FND and neurological disorders,

Unfortunately this guy was a specialist its why i waited so long to see the waste of space.

My original neurologist was not that bad she described Fnd as an umbrella the top of your umbrella being fnd and all the runners being the symptoms when put all together make up fnd what she believes is that you should treat the symptoms individually as single illnesses to dissolve the symptoms which in turn should dissolve the fnd. Sounds sensible enough but unfortunately people with fnd have multiple symptoms and of course that means more money for each tablet for each symptom and we all know there's no way the government would ever allow it as it Would cost the NHS to much.

Don't know if it would work i mean she could of fed me a load of B/S but at the time it definitely sounded like a sensible enough solution.

Also when it comes to further tests as far as I know there are no more i can have ive had.

MRI , EMG, CT. X RAY. I went through my gp which started with being fobbed off then on to rheumatology several scans later i was moved on to neurology then another several scans to then be told ive got something possibly called FND now the specialist tells me ive definitely got FND whoopee finally an actual diagnosis but by the way theres the door dont let it hit you on the way out. So after 8 years im no closer to sorting my life out i mean does anyone know if we can die from this bastard of an illness now i mean i dont mean to scare anyone but it doesnt seem like anyone has a bloody clue what this illness does and i dont care what doctors say it definitely is degenerative. Ive gone from working to not working to walking with a stick to walking with a frame and even on the odd occasion questioning about getting myself a wheelchair but I decide not to for my own bloody insanity.

Thanks again for all your messages keep safe.

Yours sincerely

Terry.

[Adventure_Nana]

Did they evaluate you for spondyloarthritis or Ankylosing spondylitis? You have some symptoms that would point to that. They often don’t show on scans until they’re pretty advanced.

[terry9griffins in reply to Adventure_Nana]

Apparently i do have spondylosis of the spine and my spine is also flat as i have no curvature at the bottom of my spine its basically the shape of a waking stick my C3 and C4 or C4 and C5 vertabrae towards the base of my neck has narrowing but according to doctors this shouldnt be bad enough to affect me. Yet ththetheY tell me one is a mild case and the other an intermediate. I did ask them what the difference is between the two and how it shouldnt worry me that on is an intermediate considering the other is only mild but as usual roundthe houses and weren't t till i got home that i realised that they hadnt actually answered the question but this was going back about 3 to 4 years ago.

[Adventure_Nana in reply to terry9griffins]

I would recommend going back to a rheumatologist, if possible at a university hospital. Best of luck!

[terry9griffins in reply to Adventure_Nana]

I went to walsgrave uni hospital when i saw rheumatology before iwas told my symptoms didn't meat there criteria for them to deal with my problem.

But thanks for all your advice its been really helpful just to have someone that doesn't mind listening.

Thankyou.

[FindingNewDreams]

your story sounds much like mine and tbh it's worrying how even with the presentation of a clear organic cause to at least some of the symptoms they are still using FND as a get off consultant list playing card.

my MRI showed a 10mm cyst in the pineal gland deep in mid brain. All of my symptoms are commensurate with this and yet its waved away by my ex neuro as not of any significance because that's traditionally taught. Specialists now realise after numerous successful operations to remove them that patients symptoms resolve and they can live again but not in this country unless you have hydrocephalus. And worrying - no further scans required according to that omniscient neuro. Meanwhile double vision caused by esotropia, tinnitus, intercranial pressure, neck weakness, headaches....

and of course if your symptoms are not "severe" or archetypal FND presentations then they don't really meet the remit for specialist FND input in terms of physio, neuro-psych etc., just label you with this Emperor's New Clothes of a diagnosis which then makes looking at anything else impossible.

I have continually low ferritin levels, regularly have a flare up with a clear malar rash recognised as such by dermatology. It's clear this is something beyond functional and yet...

and the irony that if you do have contributory psychological trauma, neuros wash their hands while psychologists deem you to be functioning outside the threshold for services - hell yeah. I'm so mentally ill my whole central nervous system is giving up on me but apparently not ill enough for treatment.

neuros to tthe right of me; psychs to the left...stuck in the middle with you frustrated as anything.