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.

Not that they fit with the neurological stuff but by now I’d want both those ruled out.

@Mirabai I think they have ruled out leukaemia but they were actively looking for lymphoma in the ct scan over 2 weeks ago which we haven’t got the results for. Lymphoma and Sarcoidosis were the 2 things he thought it could be. He’s have 2 scans, an X-ray and blood tests ‘urgently’ since we were told that and these are the results that still haven’t come back.

@endofthelinefinally I will email tonight. I have a full list of all the phone calls I’ve made and visits to hospital. Also notes from each consultation.

Thank you all for sticking with this thread xx

That makes sense, I recall they thought it could be sarcoidosis. But even if it were, it can be fatal in a minority of cases so you’re totally justified in chasing up and taking him back to A&E if necessary.

As it has been mentioned, I immediately thought of sarcoidosis, but I also wondered about lymphoma. Diabetes and B12 deficiency should also be considered, but I simply do not believe those initial test results are not back. There are further specific tests that need doing, but you need to make much more noise about the follow up on the ones that have already been done. Those results should have been looked at within days, not weeks.
Nobody can diagnose over the internet, but those symptoms are all indicative of urgent investigation, so I would worry that somebody has dropped the ball.
Please get proactive OP and don't let your DH minimise things.
Get onto all the people I mentioned and don't be fobbed off.

Another vote for addisons disease/ adrenal insufficiency. Ask g.p to do a 9am cortisol test. I was so poorly before diagnosis, similar symptoms to your husband but no swollen lymph nodes. I really hope you get answers and a plan soon.

All the best OP, sounds like some good advice in above posts and I really hope you can find the strength to kick up a fuss

@endofthelinefinally
I have rang up the hospital so many times and we have both asked the gp to try to find out. It has been exhausting. I’ve written an email now which I will send and I have records of everything.
Every time I’ve rang the hospital they have said they would email the doctor and they’d call. The emails were sent as I checked when I next rang but no one rang dh.
It feels like I’m living in a nightmare. I feel like I’ve failed him but on the other hand I can’t believe how many times I’ve rang and chased things up. I’m working full time and juggling the children as dh can’t drive.
I am so frustrated with dh for not being proactive too and being so despondent.

Agreeing with this. Call ambulance. I'm of the mind that in your husband's state he is not able to think straight and see that get must get to hospital. I wish I could help. 🌹

Also, the hospital said it could take weeks if the scan results weren’t classed as urgent. His secretary told me that the doctor had the results but they weren’t marked as urgent even though the scans were put down as urgent.

He isn’t critically ill so I don’t think I should call an ambulance (he’d be furious) but I do want to take him to a and e but he won’t go. He is sat up now and chatty/up beat but earlier was really nauseas.
I am making him sound really stubborn but he isn’t really. 2 months ago he was willing to try anything to see a doctor; a and e, emergency GP etc but now he has given up hope.

I was going to book a private consultation but the nhs process seemed so hopeful just before Christmas with the urgent pathways etc.
I will call the GP myself tomorrow and I will ask about a private consultant referral. I will ring the private hospital back too.

The irony is that the consultant is found privately is the same man we saw on the nhs. He’d probably have the results by now if we’d paid. It makes me feel sick with guilt and anger. I feel a mess tonight (but have spent this morning with bereaved families and come home to dh being cross with all of my suggestions).

It is much more likely that the consultant just hasn't received any reports and already has a massive workload. A family member was left hanging for ages for some important results and it turned out that somebody had filed them without actually showing them to the consultant. Once we contacted his secretary she went looking and retrieved them. My relative was called in the same day for treatment.
This is why writing and emailing everyone is so, so important.
Things are not running smoothly in the NHS at the moment, so you have to chase in writing.

As I mentioned before, OP, telephone calls are a really unreliable way of communicating in the NHS. You have no idea if the person you speak to will write down the message/understand what you are asking/pass it on to the right person. That is just the way it is.

I just started reading through this and I was hoping u wld have answers by now. Our nhs is in a terrible state. Being passed from pillar to post and having to constantly chase for scans, results etc. It's ridiculous. The pressure on the health service must be immense.

My mum has just gone through something similar with scans and waiting on results etc. It all started in July at the first scan when they found a shadow on her lung (they weren't looking there but the scan covered that area) so they wanted detailed subsequent scans etc. Then it went to more specialists, different consultants etc etc. I was convinced with her symptoms she has cancer and likely advanced. Basically it took until just before Christmas to rule out cancer and now she's going in soon for an operation related to what's actually wrong with her.

Ur dh sounds really unwell so I totally understand why u feel so worried an anxious. It must be a horrible situation to be in. I really hope u get some answers soon. Would it be possible for a gp home visit if he can't make it to the surgery. They cld then decide if he needed to go to hospital and either contact them telling them u will be arriving or arranging an ambulance if needs be.

@endofthelinefinally i can’t find an email address for the hospital department. Any ideas?

Are you on the local Trust website? Search the name of the consultant and see if there is a contact for the secretary. If no email address, write a letter and send it recorded delivery. I will just have a look at my local trust directory and see what it looks like, but they are not all the same.

What hospital is it and I’ll have a look for you

On my local trust website you can search by department and by surname, then click on the consultant's name and there is a phone number and email for the PA/secretary.
If there isn't anything like that on yours, there is a contact address for the hospital, and you can preface that with the consultant name and department.
Alternatively you can email PALS and ask them to assist you with the contact email for the secretary.
I found PALS at my hospital helpful in that regard.

@MyCake

OP, Haven't read to end but I'm on page 15 I think. thinking of your DH's weakness, weight loss and nausea, have his kidneys been checked? Thinking of you and your family.

Have any of the doctors looked into a condition called Cerebellar ataxia?

This sounds very similar symptom wise. Somebody in my family has suffered from this, the symptoms escalated quickly like your DH.

In the first instance I’ve just sent a detailed record to the GP and the practice manager.
I will send a similar one to PALS and to the hospital if I can find the details.

I am not sure whether the GP email will help but at least it’s something. It looks pretty awful when I write it all down.

Good luck OP.
I didn't like to ask you to name your local trust, but I hope you get somewhere with the emails. You are right, it does look pretty awful written down, but hopefully you will get a response.
I will be thinking of you and your DH and hoping you get some feedback asap.

@endofthelinefinally I have asked for that post to be deleted.
I’ve sent an equally/slightly more detailed one to PALS and asked for it to be either forwarded to the correct place or for them to send me the details of where I can send it.
I feel a bit less guilty having written it down, as I have documented every time we’ve tried to get him help which has been quite a lot!