COVID

Sorry to hear this latest update, all the very best going forward.  You are right to stay away from Google.

Getting fobbed with that 'pain, it's all in your head' thing from you GP! Hopefully the rheumatologist can help.I hope you're not going to be permanently disabled and in pain.

It's quite visibly not in my head, my toes are curling and snapping back when pulled straight! There are some weird genetic neurodegenerative conditions in my extended family (cousin just died from metachromatic leukodystrophy), and extremely high rates of MS where I grew up, so I'm quite scared and getting very limited support. I am really hoping if it isnt rheumatology related (have also had joint swelling and stiffness) they will know enough to refer me to the right consultant.

KFDancer, definitely stay away from Google for now but you've got a great community around you and you are in good hands. Keeping all the positive energy going your direction.

AUK, I hope, like me, that the MRI “for reassurance” creates an “oh f*ck” moment and helps you be taken more seriously in the future. While no one should have to fight that hard, I hope your results validate how you feel and you can get proper care.

And you were right!  I was certainly not dealing with asthma! 

Thank you all for the well wishes. I’ve received many texts and PMs.

Things are a bit scarier than I had expected and I’m trying to wrap my head around it all. GP was a bit flustered but wants me in to a consultant ASAP.  He did blood draws himself so that they would be done.

Hospital called and due to us (hopefully) going away for a week next Sunday, they hope to get me in for a CT scan or MRI Monday or Tuesday as the consultant runs clinics on Thursday.

Not going to sugar coat it, I’m nervous and scared. I think it’s highly unlikely I won’t be hospitalised at some point to drain my lung. 

Short story, trying to stay away from Google. Nothing good there.

I think there is every chance this wasn’t related to Covid. But I’ll know more next week.

I’ll keep you guys posted.

I think it's absolutely natural to be nervous and scared, but sounds like your GP is being quite proactive - so that's a plus at least.

Thinking of you, and let us know if you need anything! Hugest hugs!

It's quite visibly not in my head, my toes are curling and snapping back when pulled straight! There are some weird genetic neurodegenerative conditions in my extended family (cousin just died from metachromatic leukodystrophy), and extremely high rates of MS where I grew up, so I'm quite scared and getting very limited support. I am really hoping if it isnt rheumatology related (have also had joint swelling and stiffness) they will know enough to refer me to the right consultant.

Argh, I'm so frustrated on your behalf!  

I'm sure you've already thought of these things, but to throw them out there anyway:

Second opinion from another GP? At my surgery, there are quite a few GPs. Most are okay, a few are outstanding, but there are 1-2 I've run into that are absolutely awful. Everything is depression or anxiety or weight. Full stop. No discussion. End scene. I deliberately try and get appointments with anyone else when possible.

If your GP appointments have been phone based, request an in-person appointment to show a GP what's happening to your body? So they can see it themselves? Or take pictures and/or videos and submit them as evidence?

If you have a condition in mind that seems consistent with your symptoms, get in contact with one of the charities associated with that condition? Some of them can help patients who are running into issues getting referred, suggest what evidence you could prepare to get a GP to take you more seriously, and so on.

Can you speak to one of your specialists and get support from them if you have a good relationship with them? My physio noticed I was having breathing issues, asked if I was going to be having a workup of my lungs, and I said that one of my GPs wanted to keep treating for asthma for a few more weeks to see if that was the culprit. She said she could write a letter to the GP asking for a deeper look into my breathing, saying she noticed it at my physio session and was worried it was more than asthma. Not a guarantee it would do anything, but worth a try perhaps?

As I said, I'm sure these have crossed your mind already, but also for the benefit of anyone else reading who might want/need some inspiration to help with referrals.

 

As I said, I'm sure these have crossed your mind already, but also for the benefit of anyone else reading who might want/need some inspiration to help with referrals.

Whilst I 100% reckon AnotherUKYankee has most likely tried all of these things and more, that is excellent advice overall for anyone trying to navigate the NHS. We have to be our own health advocates!  (Struggling to get my FIL to be his own health advocate these days! He needs to learn or he will struggle!)

Uggh, definitely there are good GPs and not so good GPs at my surgery too.

Sometimes we want to just scream at how difficult it is to just have someone take us seriously too though. The struggle is very real.

Whilst I 100% reckon AnotherUKYankee has most likely tried all of these things and more, that is excellent advice overall for anyone trying to navigate the NHS. We have to be our own health advocates!

 

Uggh, definitely there are good GPs and not so good GPs at my surgery too.

Sometimes we want to just scream at how difficult it is to just have someone take us seriously too though. The struggle is very real.

It's such a shame though that it can be so random. There's definitely a spectrum of quality out there.

Whilst I 100% reckon AnotherUKYankee has most likely tried all of these things and more, that is excellent advice overall for anyone trying to navigate the NHS. We have to be our own health advocates!  (Struggling to get my FIL to be his own health advocate these days! He needs to learn or he will struggle!)

Uggh, definitely there are good GPs and not so good GPs at my surgery too.

Sometimes we want to just scream at how difficult it is to just have someone take us seriously too though. The struggle is very real.

Exactly this. My physio and specialists told my GP I needed to be assigned to a single one because I wasn't getting the support I needed, passed from pillar to post, and that it was having a drastic impact on my mental health. So I was supposed to be introduced to this GP to become "my GP" and instead they focused on my mental health and none of the other ongoing issues. After kicking off and nearly walking out of the appointment I was referred to social prescribing in the end, and guess what - there's nothing that can help me from them either because of my disabilities. It's all walks, yoga, and other physical activities. This is the most toxic country to anyone with a disability.

This is the most toxic country to anyone with a disability.

That was our impression when we were there. It was one of the major reasons (among many others) that we left. With what is happening now, and what is still coming down the pipeline, it's only going to get worse there. It's not going to be a good decade to live in the UK unless you have significant financial resources to be able to pay your own way and keep above it all.

So, so sorry to hear of all going on with you. Lighting  a candle  for you, and hope you get the care you need. Soon. Our offer stands - if you need something shipped over, and haven't got family/friends who can manage it for you, let us know.

I'm sending best wishes to everyone struggling with health right now, but especially @KFdancer!  Really hope you are feeling better soon.  I'll give you a special exception to post some cat pictures if it makes you feel better.

Hospital called!  I go in Thursday for the Full Monty.  All tests will be done and they plan to drain the fluid then (not just take a sample for biopsy).  They will still have to diagnose the cause but I'm very hopeful that Thursday will bring serious relief. 

That’s great and glad they’re moving quick. Try not to panic and hopefully they can get you answers.
You will be breathing much better once the fluid is out of your lungs!

Good news, and good luck 

My GP has since called as well, letting me know that my blood tests were "unremarkable" and was very pleased to hear I'm being seen on Thursday and they plan to drain there and then. 

One question that I had for him was "what should cause concern for me to go to A&E?" prior to the hospital appointment.  He admitted that he's very surprised I wasn't admitted when they did my chest x-ray.  He also warned that it's likely going to be a journey for them to figure out what's going on.  But I'm still very excited for some hopefully symptomatic relief on Thursday.

My GP has since called as well, letting me know that my blood tests were "unremarkable" and was very pleased to hear I'm being seen on Thursday and they plan to drain there and then. 

One question that I had for him was "what should cause concern for me to go to A&E?" prior to the hospital appointment.  He admitted that he's very surprised I wasn't admitted when they did my chest x-ray.  He also warned that it's likely going to be a journey for them to figure out what's going on.  But I'm still very excited for some hopefully symptomatic relief on Thursday.

If it's a pleural effusion, your breathing will feel much better as soon as it's tapped as your lung will have room to inflate properly again.
It's quite a big deal though so take care of yourself, before and after!