ILD review letter? After Lung Function Tests

[Otto11]

Good morning all

This is a letter I’ve received from my Respiratory team after Lung Function Tests in December As some of you may recall I’ve had CT monitoring since 2017 when lung nodules were found & then the final scan showed mild Bronchiectasis I have not been seen face to face since this diagnosis but have had a few telephone appointments It would appear from the letter that I have been discharged although not 100% sure as the letter isn’t clear I have no idea why I’ve been seen in an ILD clinic either since 2017 I did ask the consultant once why but he didn’t know & said he would change it Anyway it would seem that I should leave this lovely group as it’s obvious there are no concerns I just wanted to say thank you all for such excellent advice over the past year or two & I wish you all the best for the future. Take care everyone

[GD53]

Well that is good news. 👍 Hopefully all will settle down with the lungs. Good luck. I have a question for you. My daughter has an underactive thyroid, takes levothyroxine daily. No other medical problems. I have been looking at supplements for her, totally amazed what she could be lacking in. Is there a supplement you use which you recommend? I would appreciate your input. Thanks 😊 Best wishes. Dawn.xx

[Otto11 in reply to GD53]

Thank you for your reply. I’m not too sure about supplements as I don’t take any. I occasionally take multi vitamins x

[Troilus]

Good news Otto! And now relax 🍰

On a side note, no need to leave us. You can stay if you like.😁

[Otto11 in reply to Troilus]

Thank you. I may just lurk in the background for a while regarding Bronchiectasis posts as it could be helpful x

[Izb1]

I too have mild bronchiectasis and rheumatoid arthritis ( I am sure they go hand in hand) and was discharged from the hospital saying there was nothing more they can do for me. Its pretty shoddy care and leaving you on your own to fend for yourself but seems to be the norm nowadays. If you have any further problems go back to your gp and ask to be referred to a specialist in bronch. We seem to be fighting a never ending battle to get the right care or any care in some instances. We are here for you if you need to talk in the future, no need to leave the site and hope all goes well for you x

[Otto11 in reply to Izb1]

Thank you so much for your reply. My care has always been a battle unfortunately. RA having been missed locally for years I got diagnosed out of area 23 years ago. I’m still being seen out of area but as they referred me to Respiratory when they found the nodules that’s also out of area. 5 years ago I started having funny turns which GP diagnosed as depression! It got to the point where I was having up to 3 daily & not knowing my hubby’s name or unable to speak which was very scary. A & E told me my shoulders were stiff & to go & get a massage!! . I was seen privately during lockdown & diagnosed immediately with Epilepsy. That took 5 years! As you can imagine I’m worried about the Bronchiectasis diagnosis even though it’s mild as I’m not being seen they prescribed Carbocystine & that was it. I think I will try to discuss it with my Rheumatologist at my next appointment. I don’t want to be a nuisance but constantly seem to have a battle on my hands. Take care xx

[Izb1 in reply to Otto11]

Its disgraceful really. Are you being treated now for the epilepsy. I have been having a problem with my ear, eye, teeth and the neurologist suggested it maybe neuralgia and put me onto Tegretol, which is an epilepsy drug but have found these to give me serious headaches so have stopped them and take Gabapentin for the nerve pain which is helping, although adding to the fatigue. Carbocystine is to thin out the mucus if you have a problem with this, they dont really do much for me so dont take them often, same with unhalers, I have Ventolin for when my chest is tight and Seretide for when I have problems, again inhalers dont do much for me, so take them when I need them. My rheumy doctor is wonderful and has helped me out so much when my gp failed and isnt afraid to get involved x

[Otto11 in reply to Izb1]

Hi yes diagnosed with Temporal Lobe Epilepsy & started on Lamotrigine in 2020. I’d had dreadful memory problems for 6 years & then started with the funny turns which we now know are seizures. I’m sad as I’ve forgotten my children growing up & don’t remember being at events or places at all. I have so little faith in drs anymore. Sorry you have been having problems too. I’m lucky my Rheumatologist picks up the slack. She always has. Take care xx

[Izb1 in reply to Otto11]

So sad that you have no memories of children growing up and have had a lack of proper care that could have stopped this years ago with the correct diagnosis. I despair that there are so many people in this position nowadays. We can only move forward and deal with things step by step, but must say it has left me with little to no patience with the medical profession. Keep your chin up x

[Otto11 in reply to Izb1]

Thanks. I have lots of photos & those are my memories but yes very sad. I'm also angry with myself that I didn't push harder with both my RA & Epilepsy diagnosis but when the so called professionals tell you there is nothing wrong you believe them. GP's is a different matter all down to money unfortunately. Take care x