Chronic illness life

[Helly75]

Only in my world would I get a letter telling me I've to go for a full body pet scan & I've no idea who sent me or why 🤣🤣🤣 panic attacks are imminent!! If I didn't have bad luck I'd have no luck at all

[Hidden]

Hello

Bless you I hate it when they do things like that and why do they an explanation is not a lot to ask for and I do not think they realise how for some this can affect us

Is there a name or number on the letter I would be giving them a ring and asking what is going of

I can join you my panic attacks have been going on for weeks now and getting worse through worry regarding my health and that is my saying if I did nit have bad luck all the time I would have none at all so you are not alone

It could all be nothing they are just double checking try and I know you will struggle but to let your mind run wild often when I do that it ends up been nothing and in the meantime I have made myself ill with worry

Let us know how you get on and let us also know why as now I shall wonder to x

[Helly75 in reply to Hidden]

Hi Bekind , think I've went full on Columbo & worked it out ! I had an autoimmune blood test come back positive, was with a rheumatologist barely 3 weeks ago ,he took 15 bottles of blood at that appointment! So I'm assuming they have showed something up . To say I'm frightened would be an understatement, I've been through hell for 5 years already & now something new has happened. I just can't take anymore physically or emotionally 🥺 the scan is on the 5th April but God knows when I will find anything out. Sending you love & hugs too ,you've been through so much aswell xxx

[Hidden in reply to Helly75]

Hello

I honestly know how you are feeling I don't say to much but they keep finding more wrong with me and my anxiety is of the scale now in fact I sit and cry most days

I am glad you managed to work out why they have sent for you and I know you will but try if you can to dismiss the worse they can have us back for the smallest thing but of course our brains will tell us something else

I have tests to be done I am all over the place so when you are feeling down even though I would not want anyone and I know neither would you to feel this way know you are not alone and if you want to talk we are here x

[Helly75 in reply to Hidden]

It's really like a domino effect sometimes isn't it ?! Often feels like anticipation of what on earth will it be next & this one has hit me like a tonne of bricks . This place has started to feel like the only safe place I've got left to talk to people xxx

[Hidden in reply to Helly75]

Hello

I see it as a roundabout just as I think I might be getting of something puts me back on it again !

Now I dread just the usual blood tests coming back thinking what is going to be wrong this time and they are just routine ones

It is not a nice place to find yourself in especially when you have anxiety and do not deal with things as well and that can even make you feel angry why can you not just take it in your stride ! but for some reason we can't

But you have always got us to talk to and I hope it helps a little x

[Truffles2 in reply to Hidden]

I can relate to both of you I have a doctor/ healthcare professional phobia due to a past experience as a teenager and have various health problems but since may 22 I started with AF which seemed to kick off other heart probs have had to have a triple bypass or else I could of died anytime ( I nearly didn’t go through with it but was pressured by family, husband and work colleagues) and since then have had one thing after another, I have been referred to so many clinics it’s hard to keep track of them and every appointment causes me huge anxiety and panic. I know my fears are irrational but every time there is a new appointment I find myself having sleepless nights and total panic. The worst thing is they all seem to ask what you do for a living so I have to admit that I’m a nurse, which makes me feel even more ridiculous and people do not understand my fears

[Hidden in reply to Truffles2]

Hello

I am sorry what you are going through to

Seems a bit similar to me as I had to have a triple Bypass otherwise they said I would only have 2 years and since the op it just is one thing after another

Because you are a Nurse does not make you as vulnerable as the rest of us I have read Doctors even Surgeons can suffer the same to

I can imagine what it has done though if you are still working is make you a very compassionate Nurse to all those suffering with anxiety that you treat

I do not have the answers how we stop this anxiety but I do want to say you are not alone and we are here when you need to talk x

[jeanjeannie50]

Hi Helly

Sorry to hear that you have this worry, I really feel for you. Lets hope this scan gets to the bottom of why you're having all these episodes of myocarditis - if indeed that's what it has been over the last few years!

Now don't go off and never write here again, leaving us wondering how the scan went. Please let us know how you get on.

Wishing you well and sending you a big healing hug.

Jean

[Helly75 in reply to jeanjeannie50]

Thank you ! Just the shock & not knowing why really . Think it's now an autoimmune thing now on top of all the other stuff but still up in the air with a firm diagnosis, the rheumatologist seems very thorough so we will see ,I will let you know when I get any results xx

[Gumbie_Cat]

Sending hugs and good luck wishes. These times of not knowing what is happening feel like the worst, when just that bit of extra communication would make all the difference.

[Helly75 in reply to Gumbie_Cat]

Thank you so much , I've had 5 years of unanswered questions & being told its all in my head / anxiety. I just wish someone had of let me know why I need this scan instead of just getting a letter ,I was so shocked xx

[Gumbie_Cat in reply to Helly75]

I’ve only got atrial fibrillation, so not the same worries, but over the last year I have found the communication (or lack of it) the worst thing. It adds so much to our anxiety. Really hoping that you get some answers soon, and a good way forward.

[Catkin-blake]

hard that it is try not to worry, on the positive you might have answers to everything. I have a few autoimmune disorders, one of which I’ve just been told probably caused my myo, and poss my mvd. The good thing is the rheummy will get to the bottom of it, and you will get the right treatments . Once you know, there are some lovely supportive groups , like this one, on HU, and on FB.

[Helly75 in reply to Catkin-blake]

Thank you , the funny thing is my ANA tests over the last 4 years were negative but I've now got a positive for a particular condition,only for noticing skin changes & my vigilant gp the test would not have been done again. I think rheumatologists are so amazing & can look for things no other dr would even think of ,it's wait & see for now though xx

[Catkin-blake in reply to Helly75]

it took 15 years for my bloods to be positive for ana and RO before that I was what they call sero negative. I always think for the rheummys it’s like a jigsaw with missing pieces which they eventually find for a diagnosis .

[Helly75 in reply to Catkin-blake]

It's so frustrating, I knew myself my symptoms had went way beyond any diagnosis that I already have but as usual was brushed off ,I've literally begged for someone to help me to no avail. My scl-70 is now positive 🥺

[Catkin-blake in reply to Helly75]

one bit if advice I would give, if you need to see a rheumy, the average wait is very long generally, 15 + months, it is well worth getting an initial private consult if you can afford it, just to discuss the diagnosis of any tests and treatment plan ( they will contact your GP to tell them what meds need to be taken so through the NHS) - just make sure the rheumy you see is one that works in your local hospital as you will get transferred on to their NHS list.

[Helly75 in reply to Catkin-blake]

I'd already made a private appointment as soon as my gp told me but my nhs appointment came through really quickly which made me more scared because rheumatology in Northern Ireland can have 2 + years waiting lists so I've already been seen thankfully xx

[Catkin-blake in reply to Helly75]

try not to be scared they will sort you out, sounds like they know what it is and just need to see what’s happening involved so they can treat it appropriately with meds to stop it. They will sort you. Good luck xx

[Hidden]

I know it's hard when everything is stacked against you,but you have to think positively when you are at rock bottom otherwise you'll go off your head.So let's get this scan done and find out if there is anything wrong then you can confront it.As the song goes,things can only get better.Good luck x

[Helly75 in reply to Hidden]

Thank you , I'm just in shock at a random letter turning up with no warning but I will get over it , been having to get over lots of medical instability for 5 years so I will just have to do it again 😊

[World1inmotion]

Easy for me to say, I know, but try not to worry about the scan and any outcomes before you have it. As you pointed out your GP has been vigilant and other doctors have been amazing. They are doing their best to get a diagnosis in what sounds like a very complicated medical condition. It would have been better if someone had explained what is going on and why you have been referred for the scan but if it means they can treat your condition more effectively then it is for the best. I hope everything goes well and you are soon on the road to recovery.

[Helly75 in reply to World1inmotion]

Thank you so much ,its knowing something is really wrong & not being listened to that's caused me huge distress over 5 years but I can't do anything but wait now xx