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

[Alifetimeofdiagnoises]

Three years ago, shortly after the birth of my child I started to get physical symptoms. Horrible, debilitating symptoms that have floored me some weeks. I have probably seen the gp in excess of 15 times, had multiple tests at the hospital and was still left with no diagnoses. (My gp was absolutely convinced it was all in my head and I just had anxiety.)

I have been desperate to prove my illness tbh. Well today, 3 years and 5 months since the initial symptoms I finally have a diagnoses after further medical testing. I thought I would feel relieved, grateful even… but now I just feel so bloody sad. I’m 33 years old and I have a life changing illness that I could have never predicted. I was completely healthy before this shit! I just feel so bloody unlucky. I want to be normal and reverse the clock! I want to work, and exercise and live.

Posting in the hopes someone else who has been here can tell me the acceptance sets in and you learn to live with your new normal? Just need a slither of hope…

Because when you have been living with the symptoms for years and everyone is implying they are all in your head you really want answers and confirmation your suffering is as real as it feels

This is where the NHS really falls down - great at giving these life changing and at times life limiting diagnosis but give absolutely no back up or counselling to deal with it.

I remember I was given my diagnosis very quickly over the phone by my Consultant, I could tell that he really didn’t want to have to talk about it! when I got off the call, me and my DD’s googled it, having not heard of this particular variant, when we did, we sat there in a total state of shock. Then comes the depression and trying to come to terms with what it means and the implications on your life going forward. So I do understand OP and everybody else on this thread that are going through the same.

I can understand why someone might feel relieved when a life-changing diagnosis had been made. I had a diagnosis last year which provided an explanation for medical symptoms I had. The diagnosis didn't change the symptoms, but in a way it was a relief to know why I had them. It is however something that has taken time to accept as there are aspects of my life that have been changed. I had always hoped to do a lot of travelling in early retirement and now realise that this is likely to be impossible due to insurance costs. I have to rethink my plans and aim to visit every corner of the UK instead. Although diagnosis can bring relief in that you can have more certainty about what is going on, it can also cause a grief process as you realise aspects of your life or dreams for the future are now impossible.

@ShadowCalls I do get that - it's just difficult to gauge how to come to terms on reactions/ emotions to a diagnosis when no idea of how life changing it might be.

I think my own thing would be to follow professional advice rather than spend hours googling , find any support groups out there - some Facebook ones are very good- I know myself when I had terrible neurological stuff post covid that I found the long Covid forum very helpful and quite reassuring

I agree that the OP's diagnosis is completely irrelevant. If she'd wanted to share it she would have done. Posters who have chosen to share their diagnoses in response have presumably done so because they wanted to - they were under no obligation to do so, I didn't include my son's diagnosis in my reply. It doesn't matter what is wrong with the OP in this context, it is entirely about the conflicted feelings that come at the end of a long diagnostic journey and those of us who have been through that can relate even if we all have very different conditions.
But it is silly to suggest that it's likely to be something common or trivial anyway. For all the deficiencies in NHS care it doesn't take years to diagnose high blood pressure and you don't get told fungal nail infections are in your head!

Yes all of this.

There's a real gap in care.
Some conditions have their own specific charities that will help but the support varies wildly

And if you have a condition family and friends haven't heard of/ don't understand their reactions can be painfully underwhelming too

Although I know this was meant to be a positive comment not all chronic illnesses are linear. Many are degenerative. Which can be very hard to accept this

I think I understand OP. I understand the anticlimax element. I was very ill for a long time after having DS, lots of vague odd ‘in your head’ symptoms. Is your diagnosis autoimmune? Seems to often be fobbed off as in your head as they can all present so oddly. Anyway when I finally got a diagnosis 5 years later (lupus), I was a bit like ‘huh’!. But also found it very very validating - it’s not in my head, I’m not making it up! And now we know what to do about it!
Good luck op!

Definitely this too. All my family were initially quite unsupportive as my condition is rare and rather bizarre as far as neurological movement disorders go. The closest most people can relate to it is Tourette's or something like Michael J Fox with Parkinson's and his dyskinesia he gets as side effects from his meds.

I think my family do understand my condition somewhat better these days, but I've felt like an exhibit by medical professionals who most likely won't ever see someone with my disorder. My obstetrics doctor said he'd only ever read about it in textbooks, while a student doctor wanted to write a case study on me after my ectopic pregnancy operation, as he had never seen anyone with it either 😳😆😱

Sorry to hear that, OP - I had a brain bleed during the birth of my last child which damaged my pituitary gland. It took a year of me being very ill and nearly dying on several occasions (basically each time I got a bad cold) for them to pick it up and stop telling me I was just a tired mum!

I'm on several types of tablets and daily injections for life, and when i go abroad it's a massive rigmarole as I have to carry a cooler unit for medication - and I travel a lot with work. You go through a stage of thinking 'why me - this is so unfair' but it passes and you get used to it. If you could tell us the diagnosis someone might be able to help with the practical side, if they've had the same.

When I was in a similar situation, it helped me to think well I'm actually no worse today than I was yesterday and tomorrow, I won't suddenly get worse.

Depending on the condition though,.that's not always the case.

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.

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

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.

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.

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 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.

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 💗

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 😆😂

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

Lol I think you'd have 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

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.

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