Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

Have they biopsied or removed any of the lymph nodes for histology? This was always a first line procedure back in my day.

I'm not fobbing anyone off and I'm not arguing with anyone. It's a legitimate query. I'm sorry you were fobbed off.

I have never heard of psychosomatic lymphadenopathy. I have a collection of autoimmune conditions and have been very ill with them, but this really does sound more like sarcoid than anything else. In the end, I wonder if they might just try treating him and see if he improves? I am so sorry OP. It sounds a complete nightmare.

I think it's a dangerous route to go down. It can my fatal for myasthenics who go into crisis undiagnosed

It assumes that medical knowledge and testing is somehow complete, when it just isn't

The far more likely reality is that these people are suffering from something which doesn't yet have a sufficiently complete diagnostic test. Take myasthenia for instance. Far more people are being diagnosed rather than dismissed since new antibiodies have been found in recent years (Lrp4, MusK), previously these people were often made to feel that their symptoms were psychological. Even now, there are a group of patients who have classic symptoms (fatiguable ptosis/speech etc) but are seronegative. Some get dismissed and told it is FND, even as they can barely speak /swallow etcm others are lucky like me and have an expert neurologist and access to the SFEMG test (but even that produces a lot of false negatives so a negative SFEMG test still doesn't mean it's all in their head). The idea that tests being normal means it is psychological is such a harmful and silly narrative when new discoveries are still being made.

Sorry to detail @MyCake but it got my hackles up, and I am sure the last thing your husband or you need right now is to be made to feel like it is all in his head. I hope the consultants stay on the case and keep digging .

Have they considered the possibility of something tropical or travel related? Infection or parasite? Has DH ever travelled anywhere potentially risky?

I'm really sorry that you didn't get any clarity today. Just sending you warmest wishes. This is such a worrying puzzle for you all .

Even if it were something like FND or ME, knowing that it's nothing sinister would be reassuring.

You learn to work with your body and mind instead of against it, and can get better.

Learning to look after yourself comes late to some of us, and takes a hefty kick up the arse from our body.

I’ve got ME/CFS it’s not flipping CFS. It’s not a FND - which simply a label that gets slapped on any neurological symptoms that can’t be explained.

Doctors owe a massive apology to people with ME I think. It's quite clear to me that there are so many parallels with the rhythm of my disease (eg the cause and pattern of flares) that I cannot see any so many people get made to feel it is "nothing sinister" or " all in their heads". In fact many myasthenics (just as one example) have spent years being told they have ME/FND before finally getting a diagnosis. It's lazy, sloppy medicine

Completely agree. I have a friend with ME. While our symptoms present somewhat differently (myasthenia is weirdly specific eg.ptosis, slurred speech, etc) there are so many parallels in what makes our condition better /worse. Yet she is made to feel it's psychological. It's so obvious to me how unfairly people with ME are treated and stigmatized

Sorry @MyCake this has derailed a bit but I am always alarmed by people trying to dismiss the 'hard to diagnose ' as psychological and I hope then medical professionals you come across have more integrity and scientific curiousity

@MyCake I'm sorry to see by your updates that you still don't have any answers. At the risk of being annoying, I just want to repeat that B12 deficiency can cause all these issues and be commonly missed, and I haven't seen any mention of what his level is or if it has even been checked. I don't know if you watched the YouTube documentary I posted the link before to, but I'm hoping you have or will. I obviously don't know for sure that this is what is wrong with your DH but there is a chance that it is

Yes I do think the B12 route needs to be investigated and vitamin D levels too. But those are so basic surely they would/ should have been done first?

@MyCake i know I’ve said it before but have they checked for Addisons , aside from the enlarged lymph nodes he sounds exactly like I was

@SweetSakura and @Mirabai I'm not saying it is FND, I am not qualified, just that it isn't the end of the world if that is the diagnosis.

It's certainly not all in the mind. I've seen friends' children massively disabled by it.

I was disappointed by my diagnosis, because it wasn't 'fixable'. However, time and care, and I'm recovering. It's not 'all in my mind' at all, it's the body's response to overwhelming, sustained, stress.

I really hope they identify something fixable. There are worse things than some of the annoying diagnoses, though.

Ugh. I spent 5 years being fobbed off with this kind of argument before my diagnosis. Just because a test doesn't show something doesn't mean it isn't real.

Some things are psychosomatic, many people suffer from psychosomatic symptoms. It is a thing that happens. It doesn't mean the person's suffering isn't real. My sister had constant vomiting a few times for a period of weeks/months which was psychosomatic, it was very distressing for her, and for us to see, as she lost so much weight. Once well again she is fine.

@MyCake There are things people can try even for psychosomatic illnesses, many different medications and treatments, and the symptoms usually resolve either with treatment or by themselves, and the person goes back to normal. It really would be a good thing if he was found to have no physical cause for his symptoms. You thought he might be dying but then he definitely wouldn't be. x

Time and again throughout medical history things thought to have psychosomatic causes have, after better research, been found to have physical causes.

@SweetSakura Maybe occasionally. But psychosomatic illnesses do exist too, it can cause all sorts of symptoms. Thankfully it clears up- or may emerge a couple of times in a person's life when they're distressed, then they go back to their normal healthy selves. Often medications help clear it up completely, as can counselling etc. Would you rather OP's husband had an illness with a physical cause? Dying of something? I know I pray that he doesn't and that his symptoms resolve ASAP.

I'd rather he got a proper diagnosis. I nearly died because doctors spent far to many years dismissing my symptoms because blood tests were negative. So many people with my illness have a similar story to tell. So many went for years or decades with a misdiagnosis of FND/CFS

I've posted before about being in a similar position with dh. He currently has a working diagnosis of FND. This follows many tests and seeing how the illness progresses.
I wanted to say two things. OK, maybe 3.

Doctors can't diagnose something they haven't found.

Sometimes a non diagnosis is not a good thing (I had to run through those possibilities of CJD, MND etc, all things they tested for). Would anyone seriously want that....no they wouldn't.

Sometimes with FND, a diagnosis can help recovery once the removal of a 'physical' cause has been ruled out.
The diagnosis can change in the future.

Sometimes there is no magic test.
Sometimes a wait and see is part of it.

Op- I know it's awful, but try and see that there MIGHT be a positive in them not finding anything yet. Sometimes the very worst things are easy so see (sadly).

Sorry typo
Sometimes a non diagnosis is not a good thing

I agree they can't diagnosis something they haven't found. But a good doctor would acknowledge that just because they haven't found a physical cause yet doesn't mean there isn't one. I expect in time more research will lead to more knowledge of the different physical conditions that cause FND and CFS and similar bucket diagnoses.

That doesn't mean I am wishing a dreadful diagnosis on ops DH and I am shocked anyone would think that.

But I know my own immense relief at finally belong believed and having medicine that works and I hope for that for her DH

Well sweetsakura my dh is a medical doctor himself and I am a little defensive perhaps of people that saying that a lack of curiosity / integrity may have ever been the case for him and any of his colleagues. And that he might be labelled a 'bad doctor' because he didnt find something yet. Doctors are also people, doctors do want to help people, they want to diagnose people, they want to treat people. Doctors also get sick themselves. Perhaps you are not aware of the anti doctor tone of your posts. My dh's colleagues would love to cure him I'm sure. A 'proper' diagnosis is one backed by the appropriate knowledge.

3 of my grandparents were medical doctors @CottonSock . I am not anti doctor. Just frustrated by the attitude of some to assume that negative bloods /test results means you aren't ill. I sent 5 years being made to feel it was all in my head /my lifestyle. 5 years getting more ill. Spent the pandemic unknowingly with an untreated condition that put me at the gravest risk. Was days away from a myasthenic crisis at the point I was finally diagnosed. And I now am part of a community of people many of whom have had similar journeys, or years being told it was FND/CFS only to find they could have been treated all along. I am rightly angry and further there are many doctors out there who agree that the speed of some doctors to assume negative test results means nothing is physically wrong is a problematic feature of modern medical practice

A diagnosis of FND doesn’t actually rule out a physical origin and I’m sure your DH knows that if he’s a doctor. It just means the cause is not one that has shown up on medical tests to date.