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.

I am Coeliac thanks, very familiar with the symptoms.

There are certain key symptoms of DH that are not typical of Coeliac - hence the medical focus on sarcoidosis and lymphoma; and Coeliac is often seen with other AI disorders such as IBD, RA, Sjogren’s diabetes, AI thyroid etc. So my point was he could have Coeliac + something else.

That’s why I was interested to know about the contact of @SweetSakura

Obviously I haven't dug into the medical details in great depth but it was myositis and other complications of coeliac, no other autoimmune condition. (I know that element because I have sjogrens and was in the process of being diagnosed with myasthenia at the time so part of the reason we were chatting was to do with the impact of living with undiagnosed autoimmune disease and the struggle to be diagnosed)

Very interesting. I know someone with inflammatory myopathy + coeliac, but in that case it was the other way round - the myosotis came first and then Coeliac (or at least they were diagnosed with myositis first).

I’m sorry you have Sjogren’s and MG 💐

I don't think there's any point us speculating about whether/what nasty diseases he might have.

OP said he's stopped gluten for a few weeks.

If I were OP I think people suggesting diseases he might have would make me more scared IDK.

I hope it gets sorted soon @MyCake xx

New week MyCake and new hope. Has the neurology consultant re-contacted you again with fresh appointments? Wishing you both a better week. Eat and drink well to keep your strength.

But the point is that these are all treatable. And in my experience there is huge relief in finally getting a diagnosis after months of going downhill.

I have been thinking of you and your DH @MyCake

@MyCake I’ve been watching and hoping that you and your DH would get answers, with solutions to how he is feeling. I can’t believe how long you have waited 😔

Sending you both strength and hoping you find out soon what it is he is dealing with, at least then you will have a plan. It must feel quite hopeless just now without that.

Thinking of you and your DH.

OP in case you're still looking at this thread, know there are still people thinking of and praying for you both. Hang in there. I hope there has been some progress.

Hope you've got some answers this week @MyCake thinking of you and your DH

Just read the whole thread and really expected after 7 pages of OP’s comments that you’d have a diagnosis by now. Really sorry you don’t. I spent nearly 5yrs chasing a diagnosis for my pancreas disease and was at one point told I was obviously born with high enzymes that are secreted by the pancreas when damaged. Told this by a pancreas specialist at a top London hospital. I spent a fortune seeing consultant privately, so many endoscopies and other investigations before I was finally diagnosed with a pancreas disease. Scans don’t always show the full picture. I had a CT just 6wks prior to a major surgery to remove the head of pancreas and replumb ducts, it didn’t look that bad but the surgeon knew this happened sometimes. When he opened me up it was a different story, really inflamed and damaged. I know the frustration so well. I’m a lot better than I was though, back to working full time, still on a lot of pain relief as the damaged remaining organ won’t change but compared to how I was pre surgery it’s a big improvement.

I wish you so much luck with finally finding out what’s wrong, getting a diagnosis is such a battle sometimes and when you know what you’re dealing with it’s so much easier. I was happy to get a diagnosis in the end, which is mad, but I’d rather know what I’m dealing with rather than the unknown

He is seeing the consultant Monday and I have a huge list of questions, family history details and rare autoimmune disorders to ask about.
The endoscopy is at the end of the month so he’ll have been back on gluten for a few weeks and we explained the gluten situation to them.

This will be the same consultant he saw last time, great he seems to be doing something. Don’t leave without understanding things fully, Dr. google is not good place to explain medical treatment. Roll on Monday.
Look after yourself and hope OH has not taken too bad by eating gluten again

This will be the same consultant he saw last time, great he seems to be doing something. Don’t leave without understanding things fully, Dr. google is not good place to explain medical treatment. Roll on Monday.

Look after yourself and hope OH has not taken too bad by eating gluten again.

How is DH in himself OP? Has he stabilised at all?

I’ve got Covid. I’m so sad. It caused long term chronic fatigue and breathing problems when I first had it. I still use a mobility aid but I’m getting so much better.
Now I’m terrified because if it affects me badly again then my dc won’t have any functioning parents.
Also not sure dh will be allowed to go to his appointment Monday now. I’m also worried he will have Covid too as he’s so weak at the moment. We are quite a kissing/cuddling couple so I may well have infected him 😞

Ah so sorry about the covid OP. If it provides any hope I have had it twice and each time was completely different in how it affected me.

I’m sorry to hear that OP. You might find you have better immunity this time round.

Can you hole up in a spare room and keep away from him? As long as he tests negative on Sunday night he should be ok for his appt, but equally he could change it to a telephone appt instead.

That's the last thing you need, I'm so sorry to hear that. Sending all strength and quick healing vibes.

Oh mycake that's such rotten timing. Impossible not to worry when you know the impact it can have. I hope it is only a mild dose this time and you can bounce back.

Covid can be different each time - if that is any comfort!
Wishing you well very soon and hoping it is a really mild dose.

UGH. I'm so sorry. What a rotten turn. I hope you don't feel ghastly. Hopefully it will be a mild case. I also hope you can have a tele visit with the doctor on Monday so you can get your questions answered and hopefully set your mind at ease.

As they say "It never rains, it pours" I am so sorry to hear this, what rotten luck. As a PP said try and keep away from him, and see if he tests negative on Sunday night.
Don't worry about the DC's you will probably find that they discover their inner resilience.
Do look after yourself hopefully, this time round it won't be so bad.

I know some people with long covid symptoms who got covid a second time around felt they really improved afterwards - something about resetting the immune system.
I hope you feel better soon.
Hope your DH feels better and gets some answers
X