Seen a doctor at my practice who actually listened to me and he reckons even before I go to immunology that my immune system will be damaged by sarcoid and could also be none existent with the prednisolone,he gave me antibiotics and preds for the inflamation and phlegm I'm vouching up👍
Well done on finding someone who actually listens to the patient and seems to agree that you need treatment! I take it from what you've said here that he wants to refer you on, which can only be good too.
Hi, I am a great believer in seeing a different GP from time to time is the way forward.
Should of mentioned in earlier message my referral has been lying around docs for 7 wks!...I had to sort it by phoning and chasing up myself!!!...I usually don't see this doc as everything seems to be blamed on your weight but he was a good listener yesterday👍
He reckons there is other things to use instead of preds for immune system........he looked back on my diagnosis and listened to me💯
Well it's about time! Thank goodness you got to see a different doctor. That is appalling that your referral was left lying around. Were they expecting it to grow legs and deliver itself?
He is right there are other things such as cytotoxic drugs used for chemo but they carry their own set of side effects so you owe it to yourself to research any medications offered so that you can make an informed decision about your treatment. Morag is A1 in advising about medication and I'm sure she will be happy to tell you all about any meds you are prescribed. If you've been on prednisolone before and have found that it works for you them I would be inclined to go that route again but it's your decision in the end.
Hope you start to feel better soon. Remember to dring plenty of water while taking your antibiotics - actually drink plenty water daily as it's easy to get dehydrated when you have sarcoidosis.
June x
Cheers for info coz during the night I can drink about a litre of water when I wake up.....I phoned immunology and I might not get app now until jan 15 coz of the hold up.....can I ask does anyone get sore heels on the sole of there feet intermittent ?
any chance of getting the helpful GP to re-refer but as an urgent case to speed it up a bit? Or telling the clinic you'll accept a cancellation if one comes up, its amazing how quickly either of those options gets you up a queue a long way.
Only time I ever get sore heels is because I've overdone it and walked too far in thin soled shoes by the way, but others could be affected.
When I complained about the referral the doctor who wasn't doing his job right was going to phone me.......but a receptionist done his dirty work and said he tried for a cancellation with no joy,now it's sent to the hospital I will ring myself and tell them I will accept a cancelation 👍
Sore feet at the moment. Feel like I've walked to Lands end and back! Have to say I hadn't associated it with sarcoid but hey ho yet another to add to the list of endless possibilities?!
Read it somewhere because a friend said her husband got sore feet due to diabetes........it mentioned sarcoid as a possibility ?
Hi Squarky, Every health centre/clinic has a practise manager and I strongly suggest that you put pen to paper and write a complaint about your treatment to her/him.
I was having a dreadful time with my GPs practise, mainly the receptionists who thought they were doctors! Once you write a complaint your letter becomes a legal document and the practise manager is honour bound to investigate your complaint and write back to you with her findings. If nothing else it will make them sit up and take notice. Saying he tried for a cancellation is a load of rubbish. He couldn't had done that with the letter sitting on his desk because the hospital wouldn't know what he was talking about.
You owe it to yourself to at least get an apology out of them.
Regards,
June
Hi Rachael,
Please be careful not to blame everything on Sarcoidosis. If you are suffering pain then you need to see your GP to get it checked. You don't want to miss another health issue which could cause a long term problem because it has not been treated correctly. You'd be surprised how many different resons there are for sore feet. Please get it checked
June
As I advised Rachael, go get it checked if you are experiencing pain for no obvious reason.
On one of the other sarcoidosis forums we all agreed that it was too easy to blame everything on sarcoidosis which was not a good thing to do.
It could be due to anything from strained ligaments, sore feet from wrong shoes, to poor circulation or arthritis in the joints
I rang hospital today and they still not got referral so I rang doctors and was told letter was only written up on Friday gone and was not signed by doc until mon/tue.........gonna deffo get intouch with manager......cheers!
Hi June,
How did it go on Monday with the dentist?
It went okay thanks Linda but it's something I never want to go through ever again,
I'm still in a lot of pain which is keeping me awake so I'm now on my oxycontin and paracetamol which seems to damp down the pain somewhat. I am feeling really exhausted and a bit unwell so am trying to take it easy. I am a bit concerned that my heartbeat hasn't settled down either. I fully expected it to play up with the amount of licnocaine she ended up having to use to deaden my gums but I did think it would have settled by now. The dental surgeon was excellent I have to say and horror upon horror found a tooth hidden deep in my upper gum. She opted to leave it alone which I am happy to do! I'm shocked really because when I was in my teens I had to go into hospital to have all my wisdom teeth removed because they were lying sideways under my molars and causing no end of problems. I can only imagine that I am one of those strange people who have three sets of teeth! - gnash, gnash! I was probably a shark in a previous life!
I strongly advise anyone who is having any dental work or minor surgery to be aware of how unwell you might feel afterwards if you are already suffering from Sarcoidosis and are on different medications. Just try and take thing easy afterwards and give your body chance to heal.
I'm just going to have a sleep now to see if I feel better afterwards.
Thank you for caring. It means a lot to me.
Big hugs,
June x
Aww poor you June
You always seem to get a raw deal and things escalate for you from
Other things
Glad that the surgeon was good though
Hope it won't be too much longer with that horrid pain
Sleep tight. Hoe you wake with less discomfort
Bless you x
I'm looking for the tattoo that says Jonah! I'm sure there is one. it's probably on an unreachable part of my anatomy ha ha!
Thanks for that, there is diabetes in my family so am aware but hope it is nothing to do with that. Walked for miles yesterday at a fair but made sure I had proper support from trainers. Not too bad today but am taking it easy rather than tempt fate!