little scared

Hi Julie,

I'm really sorry to hear that you have had a long spell of suffering symptoms that sound like Sarcoidosis. On the good side at least your consultant and GP are doing everything in the right order to get a confirmed diagnosis. It's understandable that you are frightened and worried and it is usually the 'not knowing what it is' that causes the biggest fears. Typically our brain starts thinking of all the worst things that it could be and on occassion it can even start throwing out senarios of what might happen. I often wish we could at least turn our brain down a bit when we are presented with health problems. If you are getting yourself upset with the 'what ifs' then I would strongly advise that you don't start reading up on any diseases that you doctor has told you might be wrong with you. The reason I'm telling you this is because you will only make yourself feel worse and will probably feel as though you have every symptom described in the write ups. What you could do while you are waiting for your tests to be done and for results to be gathered is to keep a diary of how you are feeling each day and all the symptoms you are noticing. This will help your consultant to decide if further tests might be needed once a diagnosis is reached. Sarcoidosis for example can affect just one area, commonly the lungs, or several areas such as the skin, the joints, the nerves etc. Sarcoidosis also comes as acute or chronic. The acute form usually affects the patient over a time and then burns itself out whereas chronic sarcoidosis affects the patient over a longer time (the length varies from patient to patient). Not all Sarcoidosis patients require treatment. It depends on how bad the diease is affecting a patient and if the doctor thinks the disease is causing problems or damage to areas like the lungs or heart. He also has to weigh up the risks that go with the type of medication used to treat Sarcoidosis. All medication carries side effects but some can be much more damaging than others so a doctor might wait to see if a patients own system sorts out the problem. If you are already suffering from depression then care needs to be taken when prescribing medication as there are a lot of drugs whose side effects include depression.

To ease your worries and fears let me tell you about me. I was diagnosed with chronic systemic Sarcoidosis nearly 3 years ago. (systemic just means I have it in lots of areas.) My lungs were very badly affected so I can totally get where you are coming from. It's terribly scary when you can't even take a good breath in and when you cough the secretions are so thick and green because it causes chest infection to occur. Blood tests don't always show raised calcium or raised ACE which is the level of angiotensin-converting enzyme in the blood. My ACE test was right off the scale and my chest x-rays looked like two fully lit christmas trees so there was little doubt that I had Sarcoidosis. I also had a bronchoscopy which is when they put a small fibre optic camera into the lungs and take tine pieces of lung to look at under the microscope. They first give you a relaxant and they spray an anaesthetic spray onto the back of your throat so that the epiglottis is paralysed so they are able to put the camera into your lungs. (The epiglottis is a little flap of tissue that covers your wind pipe so you don't choke when swallowing food). The bronchoscopy doesn't take long at all and because of the medicine they give you to calm you down you probably won't even remember having the test. The test isn't sore so don't be worried about having it done. I totally get that you are feeling like everything is an effort that is because it is. You are having difficulty breathing and therefore your oxygen levels will be down. If your oxygen levels are down then your vital organs aren't getting enough oxygen and you get tired easily. You need to try and get as much rest as possible. You know the old saying?  "Don't stand when you can sit and don't sit when you can lie down." You need to put that into practice. Make sure you drink plenty of water too because you are losing fluids when you are coughing a lot and are breathless all the time so you don't want to get dehydrated as well as this will also drag you down. The other reson for drinking plenty is to flush your system after all those antibiotics.

I know you are frightened about what is happening to you and about the future but I can promise you that things will get better. Once the doctors confirm a diagnosis they will be able to start treating you and that will be fairly soon judging by how quick off the mark they were in sending you for tests. So, you have to start the ball rolling by drinking plenty (3 litres a day) and getting plenty of rest while you wait for your doctors to complete tests etc. Out of all of the diagnoses that I could have been told I had, I was sort of glad it was sarcoidosis and not something worse. I have had days of feeling unwell and days of feeling almost normal and as the time goes on the normal days are getting more frequent than the bad days so be positive and try not to get stressed because one thing that an auto-immune disease loves to feed off of is stress. I can guarantee you will feel worse if you let worry and stress rule your life. I have been there and I have felt so ill because I let myself get depressed etc but as soon as I started to fight back and take each day as it comes I started to feel much better and more possitive. I honestly hope this has helped. Please come and join us on the other sarcoidosis page where there are loads of fantastic posts from fantastic people who are supporting each other through their own journey with Sarcoidosis. The link is [url=https://patient.info/forums/discuss/sarcoidosis-not-enough-care-and-attention-given-to-sufferers-37960]https://patient.info/forums/discuss/sarcoidosis-not-enough-care-and-attention-given-to-sufferers-37960?page=25#485843 Almost everyone who has answered you here is on that forum so please come join us and I'm sure you will feel much less frightened.

Best of luck. Big hugs,

June

Sorry , I forgot to say you can just click on the link and it will take you to the forum. Also I wanted to apologise if I have just echoed or repeated the advice everyone else had already written. It's not my intention to stand on anyone's toes I just think sometimes things are more easily remembered or agreed with when more than one person has given similar advice

Kindest regards,

June