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.

OP I don't presume to know anything and am just throwing things out there in the hope it's something that may not have been investigated because you are in a bad situation. But the reason I mention it is, when folic acid is low, often doctors assume correcting that will solve the problem but in fact the folic acid is low because of the methylation problem. I cant pretend to know enough about it but I do know my friend has horrific issues and was in a bad way with similar issues. This site may explain it better. In other words, correcting the folic acid wont solve the methylation of b12 www.b12deficiency.info/author/tracey/

Hugs

Sending you a handhold OP. It sounds unbelievably stressful but you will get through it, one step at a time.

Just wanted to suggest a coeliac blood test too. Gluten ataxia is a more unusual presentation which causes mobility issues. Is there a history within his side of the family of autoimmune disease?

Sending you lots of hugs OP

I was going to say B12 as well, I have lost nearly all the feeling in my legs & feet & struggle to walk with it. Join one of the B12 groups on Facebook to get more information.

Hugs to you OP.

I found myself thinking of you at Christmas OP. I never normally take MN threads ‘home’ with me. Best wishes for the scans, - diagnosis can’t come soon enough.

He has had all of his scans now and we have to wait. He looks so ill now. He has lost nearly 2 stone, probably since early November.

Big hugs, it's truly awful that the wheels are turning so slowly

Holding your hand and thinking of you and your family.

I’m so sorry OP.

So sorry! Especially that this is dragging on for so long with no real answers.

I’m so glad things are moving @MyCake

Another person who has been thinking of you- but of course please don't feel obliged to update. I really hope you get some answers soon.

Have just read the whole thread OP. Here to handhold and sending good wishes.

They still booked the wrong scan though so despite the consultant being very concerned and pushing everything through as urgent, they still haven’t done as detailed a scan as the consultant wanted. I’m sure it’s the same registrar who booked it wrong - who also refused an mri to start with, didn’t link dh’s symptoms with other pre-existing conditions, didn’t spot the numerous swollen lymph nodes when he examined him and told my dh he didn’t have weakness in one leg when in fact it was not only weaker but had muscle wastage.

I honestly feel like they would have left him to die if we hadn’t been so persistent. I’m exhausted and back at work this week, which is a great distraction but tiring.

I don’t feel optimistic this evening. Instead I’m thinking very practically about how I’d be able to manage without him.
We can’t afford our bills from next month and this month is tight. I’ve had to cancel so much stuff - our holiday, music lessons, a weekend away. There isn’t much else I can cancel to save money.

My poor dc are watching their dad get more unwell, have 2 terminally ill grandparents and now no holiday - the holiday is a shallow thing to be upset about but I’m so fucking sad about it. We love our holidays as a family. They are fun and life feels so bleak now. I keep wondering whether we will ever have that again.

I’m catastrophizing again as I know that he could well have something treatable. I’m somehow panic stricken but also completely numb.

sorry for ranting but we also had a serious illness in the family a couple of years ago and I hoped we wouldn’t have to go through it again so soon with the dc so young. I’m so sad.

Sorry for my long and depressing posts but I’m feeling so anxious and overwhelmed this evening.

Please don't apologise at all. It is perfectly understandable with everything you're going through. Wishing you the best and hope you get answers soon. Maybe after that things will look up and you may eventually get that holiday to look forward to

Thinking of you and so sorry you've had such bad treatment. Praying you get some answers soon x

Still thinking about you and DH
Such a painful wait for results and then treatment
Sending you both Love and strength

Maybe ask DC to arrange an activity or film ‘family time’ once a week. Has to be free or under x amount and all be able to participate. This may end up being a movie night or games night at home or a walk or picnic in a garden or park.
Our city has a what’s on website for free activities.
This will distract them but also ensure family time that you are missing out on from cancelled holidays.
If this is too much to think about, ignore the suggestion.
Hoping you get some answers soon. 💐

Whereabouts in the SE are you @MyCake

im SE and happy to try and help in some way if you are local xx

I'm so so sorry you're still going through this. Do you not have a friend who could start a fund account for you? Sure there would be so many people who would want to help you if they could as this is really tough. Even if it only got you some money to give you some breathing space for a month or so? Xx