Mctd

[sianee]

Hey everybody,
quick update on things, had a letter from the consultant at the chest clinic say that after reviewing the results of my biopsies, lung function test, x-Rays and ct scans I have a diagnosis of Non-specific Interstitial Pneumonia. Despite having 'pneumonia' in the title it's is not a infection problem but a condition that causes inflammation and scarring of the lungs. When I saw the rheumatology consultant, she was swinging towards a diagnoses of Mixed Connective Tissue Disease. (Mixed connective tissue disease (MCTD) is a rare autoimmune disorder. An autoimmune disorder is one in which the immune system mistakenly views the body’s own tissues as “invaders” and attacks them.)
I have an appointment with them again next month with a view to start me on Azathioprine (an immunosuppressive drug) in the hope that it will stop the progression of this condition or at least help manage the symptoms.
I know that it's totally the wrong thing to do but I've have been looking online and finding out as much as I can (knowledge is power) 20% of people that are diagnosed with this condition don't make 10years. I'm really struggling to cope with all this, it all seems so unfair. It's unlikely I will ever have children, that I will ever lead a pain free 'normal' life. I have been feeling so positive lately and it's like all of this has been for nothing. I feel so lost and alone. How am I meant to cope with this?

 

[stephknits]

So sorry to hear this. It is so hard to keep positive when life throws more rubbish at you. We are all here cheering you on and sending hugs. Take good care x

 

[Amigo]

So sorry to hear of this diagnosis Sianee and hope you can find a support group specific to this condition to help you. Please don't be guided by often out of date stats on Dr. Google. It has its place but when you're newly diagnosed with anything, it just spooks and misinforms you. When I was diagnosed with leukaemia, I made the same mistake and read all kinds of terrifying statistics about survival times. Whilst the 20% of people you read about didn't make 10 years, 80% did and there's no reason why you can't have a normal life expectancy. The key as with all things is keeping it under control and receiving skilled medical care.

You now know what's been causing your health problems and hopefully can begin to receive the correct treatment. Get counselling if it all becomes too much but stay strong and focussed. Sending you supportive best wishes x

 

[HOBIE]

Take care ! I hope the drugs work well 🙂

 

[Lindarose]

That must be so hard to deal with Sianee Hope you can stay positive and feel better once you start treatment Sending you lots of good wishes

 

[trophywench]

Yes Sianee - Amigo is right! Cancer kills you, right? - well - the people, it has long seemed to me, that it doesn't kill - are the ones who decide it is NOT going to kill them.

Think of this - for every single person ever conceived - being born in the first place is a Death Sentence ! If you decide there's no point in trying - well there won't be - so don't bother.

So you decide, and make sure you tell it very firmly and very often - to Go Away.


Good luck!

 

[Bessiemay]

Hi Sianee I'm sorry to hear about your diagnosis. Now you know the score you can be more able to deal with it. It's already been said that 80% is a lot more than 20% and now you can get the right treatment to fight it. Don't feel alone as you have many friends on here to give support whenever you need it. Don't give up - the odds are well and truly on your side.

 

[KookyCat]

Hi Sianee
It must be very hard to wrap your head around, and I have no sage advice to help with that sadly, but immunosuppressant drugs have come a very long way in just the last few years and have some amazingly good results in some conditions. I have my fingers crossed they will work their magic for you.