It's been a tough and rough road so far, 15 sleeps til I'm a patient at Freeman hospital in Newcastle, desperate to know what's wrong with me and how it can be fixed but terrified of finding out too.
Useless appt at Aberdeen tomorrow with consultant but at least I'll get to see an up to date chest X-ray before Freeman.
If anyone has any ideas re: oxygen 24/7 versus sores inside my nose, would love to hear them.
Sleep well everyone xx
I'm at Newcastle RVI later today for my first appointment with more specialised consultant and I'm suffering with mixed emotions and unable to sleep. I feel excited but at the Same time nervous and sick to pit of my stomach. I just hope to find out more than I do already about diagnosis and possible treatment. I have already been on a high dose of steroids to no avail.
Good luck when your appointment comes around but till then stay strong xx
I feel exactly the same way only still have no diagnosis, they've been throwing steroids in liquid and tablet form at me since June to no avail yet apparently I can't come off them either!
Good luck for tomorrow and I hope you get the answers you need, try to get some rest tonight, you'll want to be at your best for tomorrow. Let me know how you get on?
It's all just about taking one day at a time until you find out what's in front of you xx
I was given a diagnosis of Sarcoidosis and Erethyma Nodosum and similar to yourself I have been on steroids since June to no avail but have been told by local consultant to stay on a 5mg daily dose, not sure why as they haven't helped.
I know all about taking things one day at a time and having life as we knew it ripped away from us... I'm 51 and now use a mobility scooter as unable to walk very far.
We have to stay strong and fight for ourselves if only to make our conditions more well known.
Hugs xx
Catherine
Hi Catherine, I know it's hard but try if you can not to rely too heavily on the scooter, are you using oxygen?
It's important you keep your body as strong as you possibly can as with all the steroid use, you need to keep weight bearing to prevent further damage to the bones. I'm 48 so we're very similar age, don't even need to walk at first, just stand then gradually add some steps, do a little more each day, keeping your body strong is so very important.
xxx
I only use the scooter when I have to as know I need to keep as mobile as possible.
No I'm not using oxygen even though I get very short of breath and suffer chest pain.
Hope to know more from appointment later today xx
You could maybe put oxygen on your list of questions for tomorrow?
Ambulatory to start with when you're out & about, it makes a massive difference to what you can do without feeling anxious, experiencing chest pain etc.
Recommend is perhaps not the correct word as I'd really rather not be using it at all but it's helped me so much to be able to do things I used to be able to do, albeit a lot slower but it helps a little with the feeling that your life as you knew it is being stolen away xx
They might walk you down a corridor to see how you get on - they did that with me at my first appt. Although that was at the freeman
Ahhhh the 6 minute walk, can't wait!
hope everything goes well and you get the answers you want. Take care jan x
Good luck - they are a great bunch.
What a nightmare you are living through. I am nowhere near as ill as you and have a very different condition, but it is horrendous not to have a diagnosis. The degeneration of my condition is very slow, started nearly six years ago, but against a background of doctors telling me there was nothing wrong with my lungs it is utterly demoralising. (Big change — August 2014 when chronic thromboembolic disease was diagnosed) But still struggling to work out what the small airways disease it. I can understand the ambivalence and fear, but I am sure you would rather know what is going on, even if it is bad news.
All the best for the next appointment.
K xxxx
P.S. Love the way you describe it, '15 sleeps'. I count mine out in TV programmes, two more episodes of 'Holby'... 15 episodes of 'The Archers'...
Good luck and I really hope you get a definitive diagnosis and there is a treatment that will help you.
Good Morning Elaine hope you got some sleep. The waiting is awful not know, but hopefully there will be a positive out come. I'm just of to bed up half the night with my granddaughter. Best wishes Nan
have you had a diagnosis yet? Freeman are excellent. Great people. I am back there next week.
No diagnosis yet Marie, hopeful when I'm there 7th -10th December there's a breakthrough. Good luck to you for next week! xx
I can't wait to hear how you get on, holding your hand all the way,huff xxxxfor sore nose I use KY jelly it does help 😉😘💕
Hi Elaine, my best wishes go with you to Freeman. I hope you get the news you want & the treatment to help you.
Thinking of you all the way 💐
Hi.......have you tried a cotton bud. rolled gently in a fresh pot of vasolene.
Just enough to give a fine layer of grease , then applied to the sore areas in your nose......... no large dollups that could clog your oxygen tubes. .......it was just a thought.
Have you talked to the pharmacy that supplies your oxygen ?
Good luck with the hospital apts.
I understand you should not use Vaseline if you are on oxygen, please check this out before you do
KY Jelly is o.k. to use and recommended by my Respiratory Team you can get it from the chemist.
take care
polly xx
You are so right Polly. The other name for Vaseline is petroleum jelly and that is because it has an element of petrol in it. Oxygen is highly combustible and therefore should not be in contact with any substance that could trigger explosion such as lighted cigarettes, matches, petroleum jelly. Xx
Don't worry about the diagnosis it's just a word once you have it they will be able to treat you. The Freeman is a fantastic hospital and will soon get you back on your feet.
Sores in the nose I get these not through the use of oxygen I use Vaseline
I have just checked and Vaseline is petroleum based so should not be used with oxygen it is a fire risk.
polly xx
Yes, you are absolutely right Polly. I've been on Oxygen for almost four days here at the hospital and my nasal passages are badly swollen and filled with dried blood. My sister handed me some vaseline on Saturday and I leapt in alarm. What a wonderful resource this forum is and how informed we are by sharing our knowledge.
Elaine and Catherine, we are all here holding your hands, as Huff so aptly said. One day and one sleep at a time.
Nasogel works really well for me.
Good look with your appointment at the Freeman and hope positive results come from it. Don't be worrying to much about it, look at it as a big step forward 
(think it's going to be Mid Jan before I get my date 
With regards Oxygen I keep the cannula's clean and dry (difficult with a running nose but like others some times use KY jelly ( NOT any petroleum based products) which helps
Stay positive and stay strong good luck and let us know how you get on
Owen
Hope all goes well for you tomorrow .
14 sleeps Elaine... Hope you are going to get some serious shopping done while you are in Newcastle. Have you got support from family/friends while there?
Xx
Hi Catherine, I wish there could be shopping but unfortunately I'm too ill for that now, would've been lovely if I'd still been well enough but I guess Freeman wouldn't be seeing me if I could still go shopping. A friend is coming with me to Newcastle, will be more than a bit boring for them but I have to find out what's wrong with me and the way forward.
How did you get on at your appointment? xxx
Hi Elaine,
I don't feel any further forward other than they are testing my blood for vitamin D deficiency, sending me to see a eye specialist to check for Sarcoidosis involvement there and sending me for a sleep test to check for sleep apnoea. They are also taking me off steroids. As for the Sarcoidosis in my lymph nodes it looks like a wait and see what happens situation.
Catherine xx
Oh I do feel for you ElaineMair as I also get sores in my nose from the oxygen tubes. Was told never use Vasoline but Sudocream is a good one. But for me because I'm using the oxygen for hours on end any cream just gets blasted away and the sore never seems to get any better. Sorry I've not got a solution for you but at least onin weeks you'll be at the Newcastle Hispital, getting some answers eh? Good luck.
How did your appointment go with Aberdeen consultant Elaine?
Catherine xx
Hi Catherine, was just a routine check up, he acknowledged I'm getting worse, ended up being ambulanced in to hospital on Friday, scary times for me, desperate to get to Newcastle for diagnosis xxx
Hope you are feeling a little better Elaine after your trip to hospital. How many days now? Are you staying in Freeman or there as a day patient? Xx
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