To be scared to death that my OH is seriously ill?

[maz2003]

My OH developed what looked like an eye infection the week before our twins birthday in March. He refused to do anything about it that week but halfway through their party decided to seek advice from the pharmacy (leaving me to deal with the party.)
That was 22 weeks ago.
His whole right face is swollen as is his nose. The swollen area is very red sometimes verging in purple. He has seen his GP ( not the same surgery as me) and she has been consistently hopeless. He has had no blood or labs done. He is a smoker ( smoked 30 a day for 45 years... he is 58). He told her he quit 6 years ago but he didn't.
He has been seen by ophthalmology who say it's not an eye issue. They refused to say what they thought it was. They suggested dermatology. It's taken 8 weeks to get a dermatology appointment.
I am very concerned that this is very serious, however he is old school and thinks the GP always knows best.
I recently betrayed his trust by showing pics of his symptoms to a friend's husband who is a well regarded ENT specialist and he tried to help by suggesting how he could be seen at ENT quickly but my oh is insisting the GP knows best.
AIBU to try and speak to his GP? Is this just unethical. We have 3 young kids and he is a stay at home dad (retired). The children wouldn't do well without him.
I am very scared.

What an absolute mess! Did the blood tests get done, at least? And are there any results from those?

You are right that it's not your situation to own and I think you've done everything you possibly can, given your OH's utter intransigence and refusal to take control of his own health.

However, I don't think it was a mistake to try - you have done your best and whatever the outcome at least you will know you did all you could.

The bloods were for general muscle symptoms- he currently has none and were unsurprisingly negative. The particular ones for skin won't be undertaken by the NHS but he can have them done privately under my work medical insurance but so far he doesn't want to.
I can't make him. It's beyond a mess really.

So basically you sit there now and ignore it? I do wonder what your OH imagines will happen and what he imagines it to be.

However, for your own sanity probably best to let him get on with it in his own way.

I know lots of people ignore symptoms for fear of what the doctor would say, but when it's been going on for nine months it's quite extraordinary. But I can see there's little you can do about it, OP. Are they at least doing tests on the mole they took out?

Have just rttf and I am aghast at your OH. You have private insurance and he won’t engage with further tests that could be done?
I feel bad for you and your DCs. If it were my dh I would also have to seriously think about staying together after this if he doesn’t value being alive for his children and partner.
There was a health scare in our wider family recently and the man in question even paid for private appointments to get to bottom of it quickly. It wasn’t bad in the end but he is on medication now, changed his eating habits etc. And his DCs are adults!!

Also utterly aghast that he is 'happy' to walk around with his face as it is and not take up the tests available to him so he can be treated. I'm sorry it's causing you such issues op

I have just been diagnosed with Dermatomyositis - This has been diagnosed through the NHS by a Rheumatologist, where an extended Myositis panel was taken via blood test as well as numerous other tests.

I have the very swollen eyes, purple heliotrope rash across the eyelids and face and was actually diagnosed by sight before the blood tests came back as there are quite a few subtle indicators with this illness that I had. I don’t have any muscles symptoms as yet... but I’ve just had a CT scan to check if there is anything lurking behind the diagnosis.

It sounds like your OH has had a really rough time with the specialists that he’s seen so far and I am genuinely surprised that nobody has given him the appropriate blood tests, but I hope for your sanity and his sake that he gets this sorted soon.

@somewheresorted - firstly I am so sorry for your diagnosis although its good that you have a plan.
He has the swollen heliotrope eyes and face. The dermatologist is a skin cancer expert and seemed unable to confirm by sight. I feel he doesn't know what he is supposed to be doing. He agreed to the bloods and then said the NHS didnt support the full myositis panel ( one in particular has to go to Bristol and we are in Scotland).
I found a private rheumatologist with a special interest but for now OH doesn't want to go.
Did you have a biopsy? The entry sites were agreed as the heliotrope eyelid and directly below on the cheek, and then he came out of the appointment with a removed mole/freckle. In my mind I feel they have mixed him up with someone else, although this is difficult to comprehend.
He has gottrons sign too, its just recently become visable but the heliotrope and swelling is getting worse almost by the day. He had parvovirus a few years ago and is on statins- both risk factors but no one seems to be considering these.
I am at my wits end, however I accept this is not my battle.

I’m sorry I haven’t read the full thread, but can you go privately at all? If you already age I’m sorry for any repetition!

When we’ve gone to bupa (we have a yearly plan) for husbands health issues they’ve been lovely, it’s a really calm environment.
I hope you’re ok too, it must be really worrying for you.

@Oilyoilyoilgob yes we have PMI with BUPA. OH won't use it at the moment. I have found a rheumatologist that has a special interest in DM and oh is aware of this.

Has he got another relative who would perhaps make him sort it? Mum, dad or best friend? Boss at work?

Actually I see his ex wife spoke to him, maybe she could have another go? Also does his GP know that he has private healthcare?

@maz2003 - any news?