Sarcoidosis - not enough care and attention given to sufferers

Sounds good to me! And an excellent reason for independence!

Hi Di & Morag

Yes I was thinking about buying the annual card last year but then once I was 'taken over' by the hospiatl I didnt bother.

But it looks like that maybe an option this year, unless of course I end up with no medication...ha ha ha!

Wales do not pay for presciptions either.

We have a crazy system, I pay National insurance and still have to pay on top, whereby people on benefits get it all free without any contributions made!!!! [I am not knocking all ]

It is terribly unfair that South of the Border you all have to pay for prescriptions. I don't understand why as I've never gone into the politics of it but if Scotland hasn't yet got it's independence how come the NHS here can afford to give us free prescriptions and why can't the NHS South afford it? At present we are still one country!!!! For you guys, it is almost like paying twice - once for prescriptions and once for your National Insurance which is supposed to encompass the NHS hence the free health so why not free prescriptions? I would however say that the doctors here don't always give their patients the best medication but do prescribe the cheapest. Once again a stupid move because if it doesn't work they then have to prescribe the dearer medication thus costing more than they would have paid if they had prescribed the better drug first! Mind you this has gone on for years. I can remember doctors saying they prescribed the drug of choice for whatever ailment they were treating but in reality they were prescribing the cheapest drug. Recently the papers have reported several cases where seriously ill patients have been denied life-saving drugs because the GP practise has decided it is too expensive. It's truly shocking. Why bother to fund research if at the end of it you are going to tell people "Yes we have a wonder drug that will at least extend your life, but you can't have it".

Exactly June!!!

I could say we here are 'totally financially drained' of our Nhs funds due to overcrowding and so much constant abuse of our 'free' system !!!!

There you go June I've borrowed your soap box to have my rant !!! ;-)

Hi All,

My appt didn't go as I'd hoped. I saw a different resp consultant that was helping out on the clinic. He said my case had been presented to a multi disp meeting & they had decided that it would be in my best interests to have an ebus just to confirm the diagnosis before they discuss treatment options. They may also attempt another lung biopsy if I'm coping with the procedure. I had a lot of chest pain during the bronchoscopy so hoping I won't experience the same with the ebus. He said they were almost certain but due to the number of unnecessary tests/procedures I've undergone he didn't want me to have a course of steroids if it wasn't needed and wanted to make sure it's definitely sarcoids. He also felt the chest & lung pains I have been experiencing is probably due to the joints in my rib age. Has anyone else found this?On a plus he said there is an improvement in my lung function tests which is good.

I'm having the ebus next week has any of you had this done? I've read a bit of info on it.

I am quite anxious about having it done due to not fully being anaesthetised when I had my unnecessary carpal tunnel op which has resulted in me becoming increasingly anxious following any medical procedure. I know its routine to them & everything will probably be fine but I do struggle.

Think I'd hoped to finally get some treatment & was surprised to hear that I needed another procedure.

June no need to apologise for your posts as they are always great & full of vital information.

I also don't understand why us southerners have to pay for prescriptions.

Sorry if sound so negative just disappointed & worried that having another procedure & more waiting after for another clinic appointment before, hopefully, I'll finally receive some treatment 😔

Hi Cassy

I had an Ebus and can honestly say it was fine

I was fully awake the whole of the time and I could even hear them counting each time they got a 'piece'

I had to test for an hour after then went home

But Unfortunately when I went back to the hospital fur my results a week later I was told that the cells were too bloody to be able to get sufficient results. You can imagine how annoyed I was

Although I discovered later whilst being treated fir TB that these were still 'growing' to came as a great suprise to me. Left hand not knowing etc...,,,

Following this they wanted to do a mediathoscopy this was an overnight stay although mine turned into two nights as my op got canceled late afternoon do I was promised it would be do e the next day hence I stayed otherwise it's not of gone back

This all went ok and I've got a vey neat 3" scar. Obviously this was more intrusive as they had to be sure after a 'failed' Ebus and misdiagnosed TB

So all this said I think it is very advisable to have the Ebus to finally get some final results

Hi classy

I have had an ebus - but the results where inconclusive and so had a mediathoscopy - all went very well

No pain and no problems - when I went in for my mediathoscopy I went as a day case -

Went in on the Monday morning sat in the day room and went for all the little tests they needed to do - went home at four o'clock - the next day I went in at eight o'clock another couple of tests and a shower with not so nice antibacterial shower cream - had to removed my nail polish and put on some support socks - I went down at 12.15 and was home by six that evening - I've been off work since about four weeks now but that was

Because my work did not want my back until I had a diagnosis and a treatment plan -

One week after the opp I phoned for my results and with in a week after that I was given the steroids -

Which I told them I wanted and gave the name of the type I wanted to try -

So don't be disappointed as your results may come back inconclusive and you have to have a mediathoscopy because once this has been done you should move forward x

You can hardly see my scar - keep your chin up big hugs x

💐💐💐💐💐💐

Hi Cassy,

You sound like you need a big hug, poor thing. I'm really sorry to hear that they are putting you through yet another test. It is important that they get it right before treatment but that doesn't help the patient feeling any less anxious. On the plus side nowadays they are far more tuned in to patient's fears and stress and they should give you a good sedation prior to the test but if there is no mention of this then you can request it. Tell them you are feeling terribly anxious and would like something to calm you down and if it is not already on the menu they will get the doctor to prescribe you something. It is not in their best interest to have a patient they first have to detach from the ceiling before doing the test! I totally get how you are feeling and I wish I could come hold your hand and make thing easier for you. Don't let them fob you off with "Oh you'll be fine there's nothing to worry about" It is totally up to you what you allow them to do and what you don't. Just tell them no sedation, no test! It makes me so angry when I see medical staff bullying patients into having tests. I actually refused to have the carpal tunnel operation because the nerve block never works on me. I often wonder how many of them have had these tests. They wouldn't be so quick to judge if they had it done. Having been a nurse I usually know what is coming which actually makes it worse. The funny thing is that I remember saying when I worked in the endoscopy theatre, "I hope I never have to have any of these tests." Now I have had them all ha ha! I think someone was exacting punishment on me!

I think your chest pain, like mine will be due to swollen lymph glands in your chest. It is very painful and you can literally point to the exact place where it hurts. I also get a lot of pain around my neck and ears just like mumps and that area has always been swollen even before I went on steroids and ended up with a swollen moon-face!

You don't sound negative or disappointed, you just sound like we've all felt at one time or another - frightened and that is very natural. Perhaps if they describe exactly what will happen it will make it easier for you. Every ones pain tolerance is different. Some people can bare lots of pain and some feel every little scratch but it is nothing to be ashamed of and you have every right to request pain relief and sedation or even to refuse to have the test at all. It is entirely up to you. I'm sure everything will go okay. Try and keep calm because as you know being stressed always makes pain worse.

We will be thinking of you

Best of luck

Huge hugs,

June XOXOXO

Linda, you can borrow my soapbox any time you want

Hi all

Just wanted to ask a question. X

Last year I went through a stage where I got really very very bad pain in the centre of my chest - I was unable to breath - I could not move I just sat in the chair and made small breaths I could not move my arms or legs - I went white and blue around my lips - this went on for about three month about two three times a week - no doctors could tell my what was the problem - I do have a hiatus hernia but I don't think that could cause this type of pain - I did phone an ambulance three times but each time the pain started to go when they arrived and I refused to go to hospital - has any one suffered from such pain in the centre that travels around your back -

Xx 😿

Hi Sharon, I had a pain like this with gallbladder stones. years ago.. Couldn't breathe properly, really painful right in the centre of my chest, and across my middle back, when I took small breaths pain eventually gave in. Has to have an operation, keyhole, when I was just 23.. There was no rime or reason when the pain came on but quite often couple hours after eating something ( could be just fruit), every time the pain came on felt like I will pass out ( face white as sheet)

Maybe ask for an ultrasound, thats all what's needed to check for stones

Good luck

MM

Hi Sharon,

I have not had pain that severe, and I must say it does sound awful for you and no doubt quite worrying.

When they were doing investigation to determine why I was feeling unwell initally one of the ultrasounds I had were for my gallbladder, so there maybe some kind of connection.

Dont leave it and continue suffering ask for an investigation.

Take care

Linda

I agree this sounds like gall bladder pain which is called bilary colic. It is said to be worse than child birth! It hits the stomach and travels to the upper right hand side of your back. Please go to your GP and get it checked out at once. I had my gall bladder removed in 1999 and you can live perfectly well without it, but living with bilary colic is hell.

I agree Di, worse than child birth. I developed mine while I was pregnant, so you can only imagine. Also forgot to mention, my arms and legs also got really sore when pain came on, like one big cramp. .. Also agree you can live perfectly without it, more work on liver but with little watching what you eat, it is fine

MM

Speak to you all in couple of weeks when I am back,