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.

That's awful @MyCake I'm so sorry to read this. Your poor family, wishing you every continued strength.

So sorry about your MIL, it's so hard

I'm so sorry @MyCake , thinking of you and your family

So sorry for the loss of your MIL

So sorry for your loss x

So sorry for your loss OP

So sorry to hear about MIL, glad DH was able to be with her.

He had an endoscopy today and a biopsy. Apparently he has gastritis and also a fungal infection (candida) in his oesophagus which apparently is common in people who are immunocompromised.

His nerve conduction tests are in 3 weeks.

I am glad he had got the clear PET scan results before his mum died because she was a nurse and had been worrying dh had cancer. I still can’t believe she’s gone.

I am pleased for you both that DH has finally got some results and that they able to put a name to them. Has he been given treatment?

Of course it a sad situation regarding your MiL, it is only natural you are all under the shock. Take care of yourself

Glad you have got at least some answers today. I am sure it must be so hard to take everything in at the moment

Sorry I hope this isn’t stating the obvious but has he been tested for HIV?

It’s just thrush infections, weight loss, gastritis, opportunistic infections are all common in people with HIV.

I had similar symptoms years ago and was tested but it was actually undiagnosed type 1 diabetes (guessing that would’ve shown on blood work by now but HIV wouldn’t unless specifically tested for).

They’re common in anyone with any kind of immune compromise.

I can’t believe you’ve had to wait so long for nerve conduction studies.

Yes but non-cancerous conditions which can
cause this level of immune destruction are quite rare. The most common cause of oesophageal candida in an otherwise youngish ‘healthy’ person is AIDS.

You don’t need a huge amount of immune compromise to get a candida infection, they’re very common, although oesophageal is not the most common form. Diabetes is relatively common, AIDS is comparatively rare.
(Also don’t believe it wouldn’t have been tested for).

You do for oesophageal candida, which is what OP’s husband has. It’s moot discussing candida in general as he doesn’t have it ‘generally’ or in a more common location, he has it in the oesophageal tract and that is indeed rare and takes severe immune compromise. It’s been established he doesn’t have cancer (thankfully), diabetes shows on routine blood tests, HIV doesnt (although I like to think it would’ve occurred to them to test for this by now). So I thought it was worth suggesting 🤷🏼‍♀️ not sure why you’ve taken exception to that?

It would also tie in with weight loss, gastritis, and nerve damage. I don’t think its an unreasonable suggestion?

OP's DHs has had an HIV test.

👍🏻 Sorry must have missed that post!

Good start to some answers by the sound of it!

I've been quietly reading and hoping for better news with each update, I'm so sorry about your MIL, you've all had such a terrible time.

It sounds like you are moving closer to some answers, everything crossed that you get them quickly.

Been following this thread for a while. I’m so sorry about your mother in law and that you’re still without answers xx

He’s had an HIV test but the symptoms do look like HIV. What conditions mimic HIV? I really hope the biopsies or nerve tests show something conclusive.

I’m no medical expert before I continue pouring my thoughts out. But neurological disorders don’t cause immune side effects do they? I thought the other way round would be much more likely. Neuropathy is a side effect of diabetes but I’m unaware of any neurological disorder that would cause oesophageal candida and opportunistic infection. Hopefully somebody can correct me if that’s wrong. But I hope the doctors are really making an effort to join the dots here as it sounds like some critical thinking is needed rather than just running endless tests.

@Cuppasoupmonster i think they’ve ruled out a neurological disorder and think it’s some kind of autoimmune diseases that is affecting him neurologically.
I am sure they tested for HIV but I’m starting to worry now as many of his symptoms fit.