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.

Did they specifically mention an HIV test or just regular blood tests?

They did mention HIV. He’s had hundreds of blood tests over the past 3-4 months and I’m sure that was one of the earlier ones.

They asked about HIV in the first appointment because of the weight loss, lymph nodes and sweats etc.

I would double check they’ve actually tested for it, and received the result - rather than just mooting it without a follow up. And possibly ask for a retest just to make doubly sure. I would say I hope it isn’t that but it sounds like you just need an answer at this point and HIV is incredibly treatable compared to other things 💐

It isn't necessarily caused by something as serious as HIV. It might not be related to whatever is making him ill. If he's not eating right, then he is going to be deficient in certain vits and minerals which will weaken his immune system. It can also happen after taking antibiotics, smoking, eating a lot of sugary foods, bad dental hygiene etc.

Remember that "smell of death" you mentioned a while back? It was probably that. Stop letting MN wind you up.

Has TB been ruled out?

Hope ypu get some answers soon Op.

@BadNomad i agree. A deficiency in anything can make you feel horrendous. When my iron ferritin levels were extremely low, I had a whole myriad of unusual symptoms including neurological and immune system related: depression, anxiety, aches, pains,tinnitus, gingivitis, etc and I felt pretty tired too obviously. The last thing I thought it would be was low iron.

Yes, there is always a possibility of a serious diagnosis but equally it isn't helpful to jump to the worst case scenario either. Many differential diagnoses are of course feasible and won't mean a serious prognosis or something dire.

@Hollyhobbi I don’t know if they’ve tested for TB and it’s on my list of queries for the consultant.

Yes, there is always a possibility of a serious diagnosis but equally it isn't helpful to jump to the worst case scenario either.

So the doctors shouldn’t have tested him for cancer? 🙄 HIV is a simple blood test and really not something ‘very serious’ or life threatening these days (under treatment) so it’s hardly scaremongering.

A deficiency making a person this unwell is rare.

They will have tested for HIV early on as soon as he said "weight loss and night sweats". Plus, advanced HIV would show up as low white blood cells in the blood tests. But his bloods are all normal except for raised inflammatory markers. Which means it is most likely to be an inflammatory condition.

And of course deficiencies can make people this ill. Your body can't make micronutrients, so if you don't get them from your diet, or if you genetically can't process them, you will die.

CNS vasculitis is autoimmune but can cause neurological issues as well as a lot of the symptoms you're describing. Other vasculitis types inc Giant Cell and Polyarteritis Nodosa can also have the same. They can be tricky to identify but usually though by bloods and a ct via rheumatology

@BadNomad exactly 💯 👏. The body needs a whole range of natural vitamins and minerals to function properly. Something like low iron or even B12 can compromise the immune system and cause a lot of inflammation from being susceptible to other infections etc. So it absolutely could cause a lot of problems @Cuppasoupmonster

I think applause is a bit OTT @NooNooHead1981 we’re all just taking guesses here.

Anaemia would've showed up in the very first bloods they did if it was that. Same goes for most other deficiencies.

How are things @MyCake ?

This thread will soon be full. Will you start a second thread?

Sending love ❤️

How are you @MyCake? Sunday nights are very hard for many people, and I'm sure you are the same, especially working in education and with all that you're going through.

Take care.

Hope all is well, Cake.

He is on medication for the gastritis and candida in his oesophagus. He should get biopsy results this week but he’s feeling very unwell. The dizziness is horrendous as is the headache and he’s still exhausted from the week at his mum’s house. The funeral is in a couple of weeks and it still feels quite surreal. On 20th he is seeing the consultant for nerve conduction tests and hopefully started on steroids.

I am not in a good way sadly. I’m trying to hide it and fight it but my latest Covid has set back my long Covid - hopefully temporarily. I’m so miserable about it and feel such pressure to be ok because of dh being unwell but also I lost a year of my life when I was completely debilitated and the thought of going back to that is unbearable.
My work are great as I think they’d like me to have time off but they also know I want to keep going so I’m doing some half days this week so I can nap and using a mobility aid at work so I don’t have to walk too far.

I am worried about money now too even though we are managing ok we are running out of reserves.
I have seen my psychologist again recently which helps keep the anxiety and trauma at bay but that is expensive too and I feel guilty about it even though I need it. I’m so bloody resilient but FFS even I have a breaking point and it’s been one fucking thing after another.

Another cheery update!!

The numbness, tingling etc is still just as bad and the visual disturbances are worse if anything. It has been over 4 months since he started deteriorating but 18 months since the first numb patches on his leg and back of his neck started.

@momtoboys @Ladybug14 and h0rsewithn0name thank you for checking in. I feel so lonely and my work involves me being very much on display and looking like I have my shit together whilst having an ill dh, being unwell myself and being bereaved!
But I do love my job and not sure what I’d do without my amazing colleagues and the constant distraction it brings as it’s so busy.

DH not being able to drive is the thing that is breaking me the most as I’m exhausted from doing everything with the dc.

Just

So glad you have a supportive workplace. I'm sure, once you have the results you will feel completely differently, whatever the outcome, I'm certain this dragged out eternal not knowing situation is just making everything harder - it would for anyone.

So sorry that things seem to be getting even tougher! Thinking of you.

I'm so sorry @MyCake , i've been thinking of you. I am not surprised you are crumbling, that's so much all at once.

Doing a mix of work and rest sounds good. But if you need a proper break then take it. Better to take a short break than keep going and need a longer one (I am terrible at taking that advice though!)

I'm so sorry. I know you have so much on your plate but could you have a look online to see if you're entitled to any financial help and support? Check out entitledto as they can work it all out for you. Might give you a bit of breathing space in that area if so x
Sending you so many positive thoughts x