Sarcoidosis - not enough care and attention given to sufferers

Hi Sharon,

I'm sorry to hear you have been troubled with this pain for so long and frankly I am shocked that your GP has not sent you for tests. It is possible that the problem is coming from your Hiatus Hernia, which is caused by the stomach being squeezed up into the chest cavity because there is an opening in the diaphragm which should not be there and can put pressure on vital organs. This type of hernia has the ability to slide back and forth too. Do you sleep with the bed elevated at the head end? You can get special blocks to put under the top end of the bed. Some people just use lots of pillows to keep sitting up while they sleep but as you move around in your sleep you can end up lying flat. If you are not sleeping upright then you really should because when you lie down the hiatus hernia slides upwards causing lots of pressure then when you get up in the morning the pressure is suddenly relieved and consequently you can end up in severe pain. A bit like crush syndrome were someone in a car crash is trapped by the legs for a long period and when the firemen cut the casualty out it releases the pressure and all the toxins flood the body and can kill the casualty. The pressure of a sliding hernia can also cause blueness around the lips etc because it is effectively blocking blood supply. The hernia also causes a reflux of stomach acid into the oesophagus which also causes severe pain because there is no protection on the inside of the oesophagus to prevent burning. Digestive pain and severe indigestion can literally stop you in your tracks and the pain becomes so bad you can only suck tiny breaths of air in. A lot of people liken it to having a heart attack. Even indigestion from an over rich meal can produce this effect. That is probably why your pain is subsiding by the time the ambulance arrives. I honestly don't think it is anything to do with your gall bladder because of how you describe the pain and how it subsides fairly quickly. However I'm a nurse not a doctor and would always advise that you ask your GP to refer you to the gastro intestinal clinic for tests sooner rather than later. Whatever is causing the pain I can almost guarantee you have digestive juices in a place that it shouldn't be and therefore you also run the risk of ulcerating that area and at the very worst causing a gastric bleed. In the meantime make sure your doctor prescribes a good medication for indigestion, don't lie flat, eat small frequent meals rather than 3 large meals a day and take a good look at what you normally eat as you might find a culprit in amongst your diet that you are sensitive to. It's surprising what foods we eat without realising that they are bad for out condition. That little bit of sauce(it has vinegar and spice) gravy (it has fat), strong tea or coffee - you get the general idea. Take a couple of days records of what you have eaten and I'm sure you will find something that is adding to the problem.

Like I said, the important thing is to go see your GP and hospital doctors. It is wrong to try and guess what it is as it could be anything and you could become very ill if you keep putting it off.

I hope this has helped but it is up to you to go to your GP before another attack.

Big hugs

June XOXOXO

Hi Sharon,

I forgot to add that it's classic for the pain to become intense and then go. It hurts because the stones get into the ducts and that causes absolute agony while they pass through. But you do need to get it seen to as soon as possible - even if the symptoms subside for a while they will almost certainly come back!

Hi all x

Yes I will go and see x

I do sleep with blocks under the head of my bed and I also have three pillows and a v shaped pillow x

When I was told about the hernia I was also told about the acid reflux but I was told that it would not cause the pain I was discribing - I do take Zantac for the acid - but I will go back and ask for a few more tests just to be on the safe side x

Thanks

I'm off for my hospital appointment Thursday been taking the steroids two weeks now

I hope I can keep them I'm back at work - just drove back from Luton tonight and feels great when I got out the card normally would not be able to walk to the front door x

Ps has sex for the first time in five years chris likes them too ha ha xxxxxx

What a total waist of time in that hospital today x

I am so angry I could cry .

I went today for a check up I think as I've never been before after been diagnosed and started treatment .

I was expecting to do some tests - so see if the noduels on my lungs have shrunk or gone - I don't know if they do -

I told him I feel a bit down took no steroids to day as I have none left -

I told him I have discomfort in the center on my chest and I feel my heart missing beats -

His reply - I've not met you before - you look well - what noduels are you talking about - you have sarcodosis it will go away in a few month - until then we will reduce the tablets to four a day for the next four weeks -

Have a nice day .

Well I was struck for works

Then before I left he said what kind of sarcodosis do you have -What does he mean by that

Well I still have this did comfort in my chest so I'm going to bed to carm down xx big hugs to you all x

Hi Sharon,

How frustrating for you.

Was this the same clinic as you previously attended?

Surely he had all your notes at hand.

It seems he really dont have much knowledge of sarcoid.

Do you have to go back to 'him' in 4 weeks...lets hope not.

Keep strong and dont let his incompetance get you down.

Sounds like a total waste of your time seeing that one!

Did he even do any blood tests? Thats the main way the respiratory consultant here tends to deal with things. Measuring levels of calcium, ACE (an enzyme that can be affected by sarcoidosis), antibodies, kidney function - a whole range of things that can give an overall picture of what areas are being affected and how they're responding to treatment. Then she can decide from those about doses of steroids and about the need for any more invasive testing!!!!

I'm not a doctor but I'm surprised at the idea of changing your dose of steroids without knowing if your sarcoidosis has started to respond or not. I was on the same dose for about 4 or 5 months before the idea of reducing the dose was even mentioned.

Mean time don't let the whole thing drag you down

Yes this was my first clinic I was diagnosed two weeks back - I have been taken the six tablets a day

I was not sure what to expect but I did think I would see the same doctor each time -

Yes let's hope I don't see him again as I told him next time he might be better prepared if he read my notes before I entered the room as I've sat two hours to see him I think that would be common sense x

Well not a very good experience for you at all being your first clinic visit.

I must say I do always see the same doctor in each clinic I go to.

It may say on your appointment card who your consultant is, and check if that was who you saw.

Then maybe you can speak to someone priopr to your next visit...which I assume is in 4 weeks?

Morag

He told me to reduce my own tablets -

He said you carnt take steroids all the time so reduce them -

If you feel well for a few days then take a couple less but if you feel unwell add a couple on

I'm just going to take four a day for the next four weeks then get some more from my own gp and keep taking the four a day until I go back which he said week be in about six to eight weeks x

The other doctors told me I would be seen every two weeks for the next three month - we will monitor you and hopefully reduce the tablets which I thought great -

But this doctors well - I hope he eats a bit of nasty food today and does not feel well tonight x 💉💊

Gosh his attitude is a bit worrying to say the least.

How can he say 6-8 weeks when you were previously told two weeks, this needs to be addressed.

I think you should see your GP to put him in the picture, hopefully he will be more professional.

Not exactly the same as what my consultant said; she'd be dead against upping and downing a dose yourself and I know she said something about at least 3 months on the initial dose to give the steroids time to take effect and start to reduce the condition instead of just giving you extra energy.

Taking the same dose for 4 weeks then seeing your GP sounds like a sensible plan. When you see the GP ask to see the letter the clinic sent out after this appointment. Its your right to see anything in your medical file and maybe he's said something more useful in it than he has to you.

Oh I feel so lucky that the respiratory clinic I'm at only has 1 doctor so you know you'll see the same person every time.

Hi Sharon

The doctor you saw sounds lazy and incompetent. I recommend you see your GP and explain to him the conflicting information you were given when diagnosised and at the subsequent clinic visit, and ask him to write to the head of respiratory medicine at that hospital, requesting clarification for your ongoing treatment.

Di

Thanks for your support &comments, Di, June, Linda & Sharon. I found out that the dr that doing the EBus is also an anaesthetist that works part of week on intensive care and apparently quite good which has helped a wee bit with my anxiety. I'm going to chat to him about my worries/ fears before hand to hopefully make appointment run smoother. Do tend to feel abit daft how this fear has built up especially as I mainly treat dental phobics myself but guess I'm only human.

Finally got my appt through to see eye specialist as well. The SPR I saw at the clinic the time before forgot to refer me 😡

Sharon I can't believe how unprofessional that doctor was. If your resp clinic is anything like mine then there are a number of doctors seeing patients & if you ever get him again I would refuse to see him & say you would rather wait to see someone different or the original doctor who gave u the diagnosis. What a incompetent idiot Like the others have said id see your GP and ask for clarification on how to manage the steroids.

Cassy xx

Sharon you need to go to your GP ASAP and tell him what happened and that you want another emergency appointment with a different consultant (preferably at a different hospital). Do not stop taking your steroids suddenly either as it can cause you serious problems if you do. If you have run out of them then you need to go to your NHS 24 for a prescription to tide you over until Monday. You must not let your prescription run out like that especially at a weekend as stopping steroids suddenly is dangerous.

I imagine his question of what kind of sarcoidosis do you have, meant whether it was acute of chronic. Acute being sudden onset and often doesn't need treatment as it burns itself out. Whereas chronic is a gradual onset of a variety of symptoms that goes on for a long period and causes more damage and therefore often requires treatment. Although he might also have been asking what part of you it was affecting but if you were at the respiratory clinic then it should have been obvious that you had pulmonary sarcoidosis so I think he was asking acute or chronic. Either way it is appalling how badly you have been treated and you certainly don't have to put up with it. Him stressing you out like that will not help your sarcoidosis either but remember you don't have to see him ever again and you need to make that clear to your GP. You also need to discuss your medication with your GP and let him tell you what to take because if anything is wrong and you are just following your own regime, you will have no come back on the hospital because the consultant can easily say that he gave you a regime to follow and it's your own fault if you didn't do what he said.

I really am so sorry you have had to experience such bad care and I hope you have a good GP who you can talk to. Who did you see who put you on steroids in the first place? Maybe you should ask to see them again and explain what happened. Even if the consultant you saw decided that you shouldn't be on steroids he should have given you a reducing regime to slowly stop the steroids. He had no right to tell you to work it out for yourself and I strongly recommend that you put a complaint in to the Hospital's Administrator ASAP. If you phone up the hospital's regular telephone number you can ask the switchboard operator what the person's name is for dealing with complaints. Write down everything you can remember him saying to you now so you don't forget anything, then put it in a letter and send it to the hospital. They have to investigate any and all complaints and you might even end up saving someone's life or at least stop them from experiencing what you went through.. If he is this negligent with other patients it is high time he was at least suspended. Even if you are not happy with the way the hospital handles your complaint you can go to the British Medical Association with your complaint and I can guarantee they will deal with your complaint seriously.

Try and stay calm.

Hugs

June XOXOXO

Hi all

Thank you for the great advise x

I have been to my gp - his advise was to take four a day for one week

The second week - take four one day and three the next day

The third week take three all week

The fourth week I take three one day and two the next

The fifth week I take two all week

I should then take two a day until I see the hospital - and I should keep a record of how I have reduced them and a record of any problems - and when I go ask for a chest x ray - and blood test and 24 hour urin test

And my gp thinks I should continue taking two a day but ill I get the results back x

Much better plan x

😀