Finally a diagnoses, so why do I feel so sad?

@bluebellsandspring oh I totally agree- which is why I mentioned about support forums that have an international base of posters- some is very US centric and relates to how easy it is to constantly test - but all of course at a breathtaking price if you aren't 100% fully covered off as part of employment etc

I am on a forum for a medical condition and one thing that I think is really poor about the US system is the costs involved. People are worried about the costs of medication and I have read some people say that they are skimping on their tablets and cutting them in half or skipping doses to try and afford their treatment. I also wonder about the people who have medical conditions but who are under insured or don't have insurance and so can't get the whole range of tests that other people in the US will receive almost on demand.

@MrsAvocet yes that's exactly the situation - on the long covid forum the Americans had all been tested for Lyme, had an MRI virtually on demand, multiple blood tests, and electro conductivity tests on muscles and various stuff to rule out MND etc- at that point I had been waiting 6 months for an MRI and over and beyond the initial blood tests if I wanted more bloods specific to certain conditions I was going to need to pay - as it was I paid to see a neurologist - I'm not remotely pro the US system for reasons it bancrupts people and isa huge money making excercise - but blimey from a patient angle if I needed it I can see why they don't get our system either

@BrainWontWorkAnymore so sorry that was the diagnosis- all best wishes for ongoing treatment etc - but yes I understand how you would feel - I too worried about this and I think the constant worry but no immediate action or treatment is in some ways at least as bad or worse than knowing what you are dealing with

I don't disagree with you, but it has happened to me. It depends on the diagnosis. I don't deny that it can be an incredible relief, but there is a balance between that and sadness that life can never turn out the way you expected.

I'm currently undiagnosed and am waiting for genetics testing. I currently have no idea what the future holds in terms of whether my symptoms will get worse. A diagnosis means that my consultant will have a much better idea of what my disability will look like in 10-20 years time. Currently it's just wait and see what happens

It makes it easier to ask for adjustments

The only thing I've noticed on forums with a lot of US participants is because insurers make money each time, they seem to get every test going in pronto time, which is I know reassuring as a patient with real issues, but costs totally through the nose- hence their huge premiums and has them wanting tests at first sign of a sore throat etc
This is very true and when I commented upthread about participants on US forums giving advice that conflicted with UK practice I didn't mean to imply that I thought the treatment they were receiving was necessarily better. I did suspect it was often financially driven. For example, my DS needed regular investigations which because of his age he needed a general anaesthetic for. His first couple were at 3 monthly intervals and then he moved to 6 monthly then annual. There were American parents in the support group I was in whose kids were still on 3-4 monthly years down the line with them happily reporting "no change, all good" each time. I would not have wanted DS subjected to that.
It's just worth knowing that if you have a rare condition and your online support group is international that there will be differences. On one occasion when DS was unwell and I'd taken him to A&E I was met with a barrage of comments like "Why did you take him to the ER. Just call your paediatrician's office and schedule an urgent CT scan." It could be very frustrating, but I still valued the support from others in the same boat when most people in my real life world were still saying "Never heard of it. How do you even spell that?"

I really relate to your last paragraph ❤️

Because it gives you a reason why you’ve been feeling the way you are, that confirms in most cases that it’s not just all in your head (although mine was - brain tumour!) and they may be able to do something about it and manage it. For me, (very very unbelievably so) it was the best news. I now knew why I was feeling the way I was and that there was treatment that would hopefully help. Until it happens to you, you have no idea how you would react. Trust me on that

Whilst I get the point you are making, it is also incredibly frustrating to have a physical cause for your symptoms but be told over and over that it is in your head. Not because that is lesser or because you perceive that as negative but because

• it's often a lazy diagnosis when further tests and questions would reveal a physical cause.
• it means you miss out on potentially effective treatment
• it means you miss out on the understanding of the physical cause and how to help yourself
• there is a gendered element with doctors more ready to tell women the cause is psychological

I think one issue too is there are so many chronic conditions that straight forward blood tests , blood pressure checks or even MRIs can't pick up without a very very specific test and you often only get that if your symptoms all point towards one diagnosis. That includes things like Lyme disease, coeliac , non coeliac gluten sensitivity, and often some thyroid disorders where even though it can be picked up in bloods you might be 'on the borders' of normality and GP says 'not at the level for medicating' or post viral issues ( long covid being one) - all of these can have a whole range of ongoing debilitating stuff that takes years to get to the bottom of - if ever. Hence you get situations like OPs who has been mentally struggling for 3 years knowing something ''wasn't right' -

The only thing I've noticed on forums with a lot of US participants is because insurers make money each time, they seem to get every test going in pronto time, which is I know reassuring as a patient with real issues, but costs totally through the nose- hence their huge premiums and has them wanting tests at first sign of a sore throat etc

I think there also needs to be some general reframing of the idea that ’it’s all in your head’ is a negative thing. It may well be that an individual’s mental health or neurological condition is manifesting as physical impairment or pain. Just because the pain is generated from the brain for whatever reason doesn’t make it any less real to the sufferer. This is obviously a very complex and emotive subject as previously anything that was due to mental health was widely perceived as a personal failing or something an individual can choose to resolve if only they tried harder. That is quite clearly untrue but public perceptions take a long time to change and even though mental health conditions are now more widely understood, less stigmatised and have better treatment options being told ‘it’s all in your head’ still has very negative connotations to most people.

It’s complicated as it’s also very dismissive when there are often underlying complex physiological issues that are overlooked. Most people now understand that having something wrong with your mental health can be just as debilitating as physical but there is definitely something about being told your illness is psychological that is harder to accept, especially with physical manifestations of symptoms.

Its paradoxical in a lot of ways and it doesn’t help to frame any causation of illness in a way that makes an individual feel like they should be able to cure themselves or aren’t believed.

It’s a difficult time throughout: waiting for a diagnosis that may not come, or may be different to what you expect, whilst still holding onto some hope that your chronic illness is treatable.

Then post-diagnosis, it’s navigating a new normal whilst dealing with the emotional and mental side of having an illness or disability confirmed and not being sure how much one will regress or improve.

It feels like an eternal sword of Damocles

I totally empathise. Apart from my main diagnosis which means I’m in a wheelchair a lot of the time, I’ve been provisionally diagnosed with FND and referred to a specialist. There’s definitely a link between dopamine, GABA and movement disorders but because I presented with a history of anxiety, trauma and migraine, FND was the go-to.

I have totally different neurological conditions but I felt the same after years of being told it's in your head (I have migraine plus other neurological issues because of it) and was once offered talking therapy as nothing worked so I was clearly imaging the pain.

By that point, I'd seen many neurologists and had so many tests from childhood

Lol I think you'd have to! 😆💗

Thanks for your reply, I think if my husband finally got a diagnosis I would hug the guy too.

Just to add that I saw four different neurologists before the fifth one confirmed almost instantly the symptoms I knew were the movement disorder I have were part of it, and not just in my head. The validation he gave me made me almost want to hug him 😆😂

So sorry to hear about your DH. My first "diagnosis" (before my actual one of my genuine movement disorder) was a functional neurological disorder or FND, which is really a bit of a cop-out for when neurologists don't want to diagnose you (or don't know) what to diagnose you with. I'm pretty sure they gave me this diagnosis as they were gaslighting me, and didn't want to admit psychotropic drugs like antipsychotics can harm people.

Please push for a proper assessment and see a different specific specialist possibly a movement disorder neurologist like I did. They may be more familiar with the types of symptoms your husband has. My movement disorder involves tremors as some symptoms too, but it's because it's owing to dopamine levels dysfunction, and it makes my involuntary movements wax and wane, which also includes tremors (as does Parkinson's which involves dopamine too).

Anyway, I digress... sending hugs. Neurological conditions are hard to live with 💗

I was thinking of conditions like mine (Myasthenia), that can fluctuate daily (but I was used to that pre diagnosis) but the impact of diagnosis was that I discovered that it was not only debilitating (which I already knew) but that various factors (respiratory illness/certain contraindicated medications/severe stress) could cause a rapid and life threatening crisis

Pre diagnosis I was physically limited but diagnosis while a relief in terms of answers brought with it the new fear and reality of life threatening crisis and potentially long ICU stays. That side of it was a shock and rather countered some of the relief.

This thread has given me food for thought. My husband has been diagnosed with anxiety and depression but has a whole set of physical symptoms that are similar to parkinsons but has had a myriad of tests, including scans, mris etc etc and they say he has nothing new (apart from his heart disease and a mini stroke that left a small scar on his brain). He is told that it is all anxiety, the headaches, stiff muscles including facial muscles, feeble legs, strange gait while walking, tremors in neck head area, insomnia, feeling he can´t swallow properly. He wakes up complete stiff and feels he can´t move. He is on an antidepressant and has been to psychologists and psychiatrist and nothing helps. So much so his psychologist thought his problems were physical. So back to square 1. He says how much he wants to be taken seriously and for someone to investigate what is happening to him. He wants a diagnosis but is also afraid of one. I tell him it is all in his head (as the doctors say) but there is always this lingering doubt. The pps who were diagnosed after years and years and were vindicated made me think. We are on year 6.
I am on a med for life, since I was 26, diagnosis was a relief, I got an op after some side effects to medication and now I am 50 and fine really. I didn´t create drama over it and acceptance came quickly.

I'm sorry to hear that, but what I was getting at is that if the OP didn't know how she would feel hour to hour yesterday, then today is likely to be similar to yesterday and tomorrow is likely to be similar. The symptoms, wheteher fluctuating or stable will still be the same.

I suppose if the OP's condition varied day by day previously, then what you say is true, she could have a bad day tomorrow for example. In my case, my illness was a progressive one, so whilst I have since experienced a slow decline and will continue to do so, taking one day at a time, I don't really notice the difference, like I do if I compare how I am now to how I was five years ago.

My condition means that I don't know from hour to hour how I'll feel.

I had a similar situation after birth of my dc. The condition I have affects women and is often dismissed as in the head or asthma.
I found a lot of support on a facebook group for the condition.