Going Private, once again

[DaveT81]

Hi all,

Was everybody else's attempts to get some sort of diagnosis equally as frustrating? I mean, I'm not even 100% that I'm an FND sufferer just yet, but I can't seem to get any further along on my way to finding out!

Had a referral (at last) to neurology from my GP, but they rejected that and re-referred me on to rheumatology (with no explanation for). Not suffering any pain, arthritis, etc. so unless it's some sort of muscular dystrophy.. My GP just went along with it.

I'm having to go back to him this afternoon to ask him to refer me to Spire. The frustrating element here is that the 3 neurologists at Spire in Liverpool all work at the Walton Centre for Neurology. Also, Liverpool.

I'm desperate though. I'm not enjoying life at all at the moment, each day is a new raft of symptoms and I wake up wondering 'what will I be able to do (or not) today?

Sorry, just had to let that out. It's bloody infuriating!

[Hidden]

LOL you said bloody! Us americans like the lingo yall (you-all) use. Yes I totally can understand your frustration not know what kind of things your body will do. Since I work 40 hours a week I can really do so much to help my symptoms and body instead of trying so hard to eliminate my symptoms since no one knows if its possible.

I bought these orthotics to help my feet and ankles. In machines that are computerized or have any logic to it, it relys on sensory input to control output. Hence our bodys "senses" to "motor" function.

I put them on and bam I was able to walk! My Heart filled with joy. But as I tried to walk down the street my body swerved to the side and I had fits that stopped me. My position sensors dont work. I didn't know that was going to happen I didnt go to work for an 8hr day yet.

SO like you I have no idea what will happen. But......chin up walk with happiness and love. WE know your pain and the good lord knows your heart.

[DaveT81 in reply to Hidden]

Haha, I say bloody a lot in real life (but also much worse!), particularly at the moment.

I'm doing what I can to stay positive and I've paid for a 'private' neurologist appointment next Thursday so that can hopefully be the start of something a bit more positive.

[DNE92 Moderator FND Hope UK]

Hey just rant away - you deserve it, we all deserve the space to let off steam when no-one seems able to give us a straight answer. I've been seeing a UK specialist for 5 years for my seizures and have had no FND specific treatment whatsoever. And I am quite a vocal person - not aggressive but assertive (I know where the line is). But on one occasion was told I was too complex to treat. But having a hell of a time finding a private specialist. Plus we all seem to be buying things privately - a bit here, a bit there. It all adds up and doesn't seem right either. And I've just got steadily worse over those 5 years.

Cheers.

[DaveT81 in reply to DNE92]

I know what you mean. I was off for 4 months from last September, initially, and got to the point where I felt I should go back to work. I lasted 2 months. I did a 'phased' return for the first month but by the end of the 2nd 'full' month I was almost on my knees.

For me, the biggest issue is that my breathing is - for some unknown reason - buggered. It's making life a misery and I have to have almost perfect conditions to feel like I'm not a 90 year old with COPD (i.e. my dad).

My last NHS GP was awful, so I went private. Spent about 4k of money I don't really have (borrowed from my retired mum) before changing NHS GPs. This guy seems good, he's very keen to help and has agreed to refer me to whoever I've asked since I first met him.

But yeah, like you, I've been struggling gradually for almost 2 years, was mainly neuro issues with my head at first, but has now progressed to arms, legs, stomach, breathing and in the last few days I have now got a touch of vertigo. Lovely. It sucks to be us, right?

[Hidden in reply to DaveT81]

I dont know what my life will be like in a year from now but I understand how you feel. In the USA lingo we say "I feel you" or "feel me?".

I went from having siezures daily to having staring and body jerks sometimes and now i say things i dont know what they are. My feet stopped working and my legs are noodles now.

It was sometimes in the day to now all day everyday.

I recently got ankle foot orthotic on both feet and my walking improved with stability. When I took them off I went down lol. It sucks big time to watch our bodys go down.

There is a bright side. Every day I go to work I show the world that I'm strong in other ways besides physical. Every attack or every person I meet and they see me, I give them hope that people like me can still have happy lives.

I may have to give up certain things but hey oh well time to start something else I CAN DO, I'm not totally f@#ed😆

[Linlechelie]

Hi Dave. I wasn’t happy with my (lack of) diagnosis from my initial neurologist so I paid for a private appointment at Renacres, and although it was £250 that I haven’t got, I did feel like it was the most attentive appointment that I’d had. I was in there for about an hour. The neurologist referred me back to herself at the Walton Centre and is now ordering further tests on the nhs. I don’t think she has come up with a better diagnosis than the one I originally had, but I do feel like it’s changed the dynamic and my case is being looked at a bit deeper than it was if I’d stayed with the first guy. For me it’s just been a really valuable way of getting a second opinion, and the time with a specialist who really looks closely at your symptoms.

Lots of luck