Priscurl's Sarcoidosis Story

I was officially diagnosed with sarcoidosis in April of 1999, but my health was declining from the late 1980s onward, and I believe I had an even earlier encounter with sarcoidosis, with a brief few years of remission before the monster returned.

Around 1988, while working at my first pathology lab as a qualified technical officer, my colleagues in microbiology told me I ought to get an IVP done because there were abnormal numbers of red cells in my urine. A natural therapist had told me this a year or two earlier. At the time, I just didn’t want to know. I also believed I had thyroid disease. I was putting on a bit of weight, going from a size 12 to a size 14. I also was getting cramps, weakness in the arms when driving, constipation, brittle hair and nails etc. Several TFTs showed borderline, abnormal and then normal results, so as doctors had done nothing about, I gave up getting tested. One day I was particularly arthritic, so I called in sick to work. My boss found the blood I had given to calibrate a new instrument and tested thyroid function, as he suspected I had this problem himself. Next day he told me the results. I saw my other boss, a GP specialising in thyroid surgery. He did a Thyroid Abs test and a TRH. The TRH showed the thyroid was not responding to TSH from the pituitary. The problem did not seem to have any cause, so it was deemed “idiopathic”. I was put on Oroxine and have been on it to this day, but now occasionally need Tertroxin as well.

Working in the pathology labs, I was always becoming ill with flus, severe sore throats, vomiting and diarrhoea. I have never been as sick working in other fields such as agricultural research, animal houses or doing clerical type work. For some reason, (?Murphy’s Law) there seemed to be an increase in HIV and Hep C positive blood coming across the desk in broken blood phials. With this potential immune system problem looming, and these contaminated broken phials of blood, it helped me make a decision to get out of the pathology industry. Working in a field where myself and others were in close contact with the bodily fluids of the ill, despite due precautions, it seemed like a wise decision to get out after I was retrenched. I am sure my frequent sicknesses were a factor in the decision to retrench me. Before leaving, I tested myself for Lupus. It was negative – but I still feared I had something Lupus-like, and given the frequent bouts of ill health I had in pathology work, if I ended up on immunosuppressant drugs, I almost certainly could have ended up sicker. I briefly worked at a local high school before deciding to go to university. My decision to go to uni was partly based on the idea of re-training out of pathology, and hopefully getting a job in the public service. I also did it in the hope that I could sort out my health and get on a form of treatment before re-entering the workforce.

I started Uni with pneumonia and severe ankle pain necessitating that I went downstairs sideways like a crab. I had been a Scottish Country Dancer for 10 years by then, and late that year I gave it up permanently because it had become too painful. I also noticed I had begun to get more out of breath than I had in the past. At first I put this down to age, but then I remembered I was one of the youngest dancers of all. I was also getting screaming muscle fatigue climbing stairs. It would come on about 6 steps from the top and last for about 20 strides after. I was a fit dancer and this made no sense to me. Scottish Country Dancing is like Square dancing with Highland Dancing type steps. My calf muscles were rock hard from all the dancing, so it was puzzling why I had this problem with stairs, which would get worse in time. I also noticed that I was really stiff after driving to and from university each day, a distance of 34 kms.

During second year, I started to get widespread inflammatory muscular pain. It was soreness similar to having the flu coming on, or working in the garden for several hours. I was unable to keep pace with friends when going to classes. I was also getting very bad headaches and nose bleeds. I went to see a counsellor and she suggested I see one of the doctors at Sydney Uni Health Service. My timetable did not allow me to get to my normal GP during my first two years at uni. So I went to see this wonderful GP at Sydney University Health Service (SUHS). I told her I had been a pathology technician, why I was training out of it, and gave her a list of the bodily changes I was noticing in myself which, in addition to nose bleeds and headaches included, higher BP, muscle and tendon soreness, malaise, dry eyes, dry mouth, chest tightness and strangely swollen fingers etc. I told her I had many of the symptoms of Sjogren’s Syndrome and was concerned about having it. She sent me to see an ophthalmologist who did a Schirmer’s Test and the antibody tests for Sjogren’s. The bloods were negative but the Schirmer’s showed I had no tear film in the left eye and the right eye was only just in normal range. Despite the negative tests for Sjogren’s, my doctor believed I ought to see an Immunologist who treated these disorders, so I rang the Lupus Association of NSW Inc, and got the name of a doctor at Westmead Hospital. The immunologist I saw agreed that I had some symptoms of Sjogren’s but didn’t think there was very much wrong with me when all was said and done. But the bloods had not been taken at that stage. My weight had climbed after I gave up dancing. In first year, I was became a size 16, but I ended the year a size 20.

After my encounter with the immunologist at Westmead in 1994, the SUHS doc asked how I had got on with her. I explained she hadn’t thought there was much wrong with me at all. The doctor then gave me a copy of the immunologist’s letter and I was gob smacked to discover I had a raised ESR, CRP, immunoglobulins and also an abnormal Protein EPG. The raised immunoglobulins ought to have prompted an investigation which included sarcoidosis in the differential diagnosis. On my next visit, the immunologist told me that I had an inflammatory condition. She said the pain I was feeling was real, but that it would not kill me. She said when it was bad, all I needed was a couple of ibuprofen and a cup of tea and this would make me feel better. The immunologist helped in other ways by diagnosing the headaches as migraine, and sending me to a neurologist to get them under control (I had started vomiting with them). Once I got onto treatment for Migraine (Imigran, Amytryptaline and Verapamil) they decreased in severity, frequency and length. This Westmead immunologist also discovered my abnormal urine red cell numbers. I explained I had known about it for at least five years by then. She decided to do further tests in order to find the source of the cells. The red cells were found to be dysmorphic or crenated cells coming from the kidney. So she then referred me to a renal specialist. During my second year at uni, I ended up in emergency with pleuritis and night sweats. The only normal tests I had done in the hospital were the VQ scan and chest x-ray. Every other test they did was abnormal. Two weeks after this, I got the first bout of bronchitis I had had since the age of five. I lost 10kg because breakfast never stayed down.

The renal doctor I was referred to did GFRs and imaging. As my kidney function was normal, he decided not to risk a biopsy. He said he would review me for five years and if nothing eventuated during that time that I wouldn’t need to see him again. My inflammatory markers remained abnormal between 1994, when I first saw the immunologist, and 1999 when I was diagnosed with sarcoidosis.  The Westmead immunologist kept me coming back every three to six months

As immunologist at Westmead had not made any progress toward a diagnosis, and I seemed to be getting worse, late in 1998, the SUHS GP sent me to see yet another immunologist recommended by the Lupus Association. I told him about the strange kidney issue, the facial numbness and swelling which began in 1995, the sweats and fevers, the dry left eye and my fears of an immune problem. He said he thought I had cluster headaches and obesity problems. He did allergy skin tests which were negative, a cholesterol level, which was abnormally low, and also a Schirmer’s test which showed the right eye had now joined the left one with having no tear film. He said my kidney problem was probably thin membrane syndrome. The test results were enlightening for me, if not for him.

In early 1999, I began to feel worse than ever. I started to sweat much more than usual and had a slight fever. I also started to become much weaker than normal. The pain began to ramp up also. I was having difficulty walking and had to stop every ten yards or so. I decided to go to a doctor at SUHS, even though my usual doctor was on holiday. I told the doctor about my very painful muscles and not being able to walk far without stopping. I begged him to do a CPK in order to see if there was any chance I had myositis. The CPK was normal, ruling this out. At this stage I began to believe they would figure out what was wrong with me on a mortuary slab. Too sick to get back into uni, I had to cancel a Public Service Board exam, the last one ever done. Feeling a failure about not making the exam, I didn’t know within a few weeks the diagnosis would be sealed.

I had developed a tremor, and I was so weak I could not pick up a mug of tea. I also had dreadful pains in the head which were so bad; I had to lie down where they hit me. I was really afraid, but kept distracting myself with tasks. Then one night I noticed these lumpy bruises on my legs. Too sick to make the uni doc, I went to my old GP. He didn’t know what the lumps were, but offered me prednisone. I told him I wanted a diagnosis, I didn’t want something which would mask the problem.

As I drove home from the doctor’s, I remembered I had read about these lumpy bruises called Erythema Nodosum in a family medical manual. I looked it up when I got home and discovered they were related to sarcoidosis. When looked up sarcoidosis in the same book, I knew I was onto something. After finding out more on the internet, it all seemed to fit like a glove – the sweats, fever, muscle soreness, malaise, ankle pain, tightness in the chest, cough, erythema nodosum, pleuritis, bronchitis, facial numbness and swelling, migraines, but most of all – so did the elevated inflammatory markers, the negative antibodies for Lupus and Sjogren’s Syndrome, the raised immunoglobulins which should have been a red flag for the doctors, the erythema nodosum and the dry eye problem all fitted. I told my mum, who happened to be a triple certificated Clinical Nurse Specialist that I had figured out my health problem. She told me I couldn’t have sarcoidosis because I hadn’t lost any weight. I told her I would wait for her to come back to Sydney before I saw the doctor again to ask for a chest x-ray and/or an ACE test.

I asked my old GP for an x-ray and then worried for a few days wondering if it was going to turn out to be a crock like the Lupus, the Sjogren’s and the myositis!!! At the Radiology, the radiographer popped back in to ask if I had a cough. She then came back to tell me the films were OK and that I could get dressed. Then came a bombshell!

“Are you thinking of returning to the doctor this afternoon?”

“Not necessarily”, I replied.

She explained she would personally deliver the films to the doctor when they were ready. I guess she was signalling to me she had found ‘something’ which needed attention ASAP. I took the hint and asked my nurse mum to go along with me. The doctor’s instructions on the referral to the radiologist had been “exclude sarcoidosis”. The radiologist’s conclusion was that sarcoidosis, lymphoma, malignancy and TB could not be excluded. The radiologist suggested a CT scan which also showed hilar lymphadenopathy. The old GP sent me to a chest doctor in Westmead who got me into Concord Hospital within two weeks for a mediastinoscopy. I was in the first year part-time of Honours at Sydney Uni in April 1999.

My supervisor had refused to take me on unless I did honours part-time, because she didn’t think I was strong enough to do it over a year. She had to put up with me coughing through seminars, but the doctors took several years to put it all together, and it the end, it was me who put the pieces together for them! Doctors don’t see what others see, or indeed what mothers see. At Concord, they told me the frozen section done in theatre looked like sarcoidosis rather than anything else, but it would be about six weeks before they could confirm it after excluding cancer, lymphoma and TB with histological and microbiological testing. The Chest doctor also suggested I get my eyes checked by an ophthalmologist. They found I had uveitis, so was given steroid and atropine drops for it.

After I was diagnosed, my GP gave me a letter for the immunologist at Westmead. The doctor had to admit that it was probably sarcoidosis all along, but relations between us, which had been strained from the start, degenerated. I decided to find another doc, but it was like jumping from the frying pan into the fire. The rheumatologist I saw in Sydney never believed I had sarcoidosis from the start, though she agreed I had bursitis which was beginning to blow up and get worse. One day I was unable to lift the leg from the ground and she diagnosed me with trochanteric bursitis and gave me a steroid injection. After the injection, I felt the best I had ever been in the last five to seven years. I was going to give this doc up and find a new one... someone who would give me the magic steroids; the relievers of pain and fatigue; the drug which was always suggested as the drug of choice for sarcoidosis on US web sites. I was told my sarcoidosis was NOT bad enough to require steroid treatment. But the doctors didn’t have to live with it day to day. There is nothing worse than lugging a back pack with 10 library books several hundred yards in the heat to a seminar, when you have sarcoidosis!!!

I finally found an immunologist who was recommended via a sarcoidosis support forum in the US. This immunologist surveyed the data sent to him by my SUHS GP, and decided, based on tests and history that I was indeed ill enough to require treatment. He decided to put me on pulsed prednisone 5 mg and 200 mg of Plaquenil. The Plaquenil was raised to 400 mg after two weeks. I went into a brief but welcome remission for a few months. It was the best I had felt for ages, but the Plaquenil and Prednisone had a sting in the tail. Psoriasis runs in my family and these drugs triggered psoriatic problems. I developed psoriasis, nail onycholysis and pitting, koilonychias, enthesitis etc. These were all confirmed by a skin specialist or my GP. These problems always flared when I came off prednisone, a drug reserved only for the most severe cases of psoriasis, as it known to flare the disease. The Plaquenil is also known to exacerbate these conditions.

Unfortunately, the remission didn’t last. By now I was deep in a PhD at Western Sydney Uni and preparing for a research trip overseas. As well as trying to continue work on the PhD and not fall behind, I was trying to get finances, flights, accommodation etc. sorted out prior to leaving. The stress of this saw me back on prednisone for a few weeks about two months before departure. I had lost 17kg during my remission and put 4kg back on while on this prednisone.

But now there were other things occurring. My nails were going white and lifting from the nail bed (onycholysis). I had severe pains in my ankles again, and my skin was blotched, scaling, inflamed and itchy. I thought I had a fungal nail infection and treated the nails with Daktarin, despite the fact nothing was found in nail scrapings. I wore nail polish to hide them while overseas. The flight to Singapore nearly wiped me out (radiation). I had a whole day there until my flight left for Frankfurt. The heat made my skin burn and I felt shattered. I was also severely constipated. I didn’t eat and cried myself to sleep wondering if I should pull out and go home. I knew the weather would be more conducive to sarcoidosis in the UK, so I pushed on. I was, in fact, very well in the UK with its cool temperatures and cloudy days. I took prednisone with me, just in case, but I didn’t need it.

I arrived home to a hot, unbearably bright Australia in early December. I saw my immunologist the following day, and because I had been so well in cloudy old Edinburgh and London, he cut my Plaquenil dose back to 200 mg. This was 2003, the world’s hottest year on record!!! Within 20 days of my return, I had glands up under my chin, round the back of my neck, in my groin and under both arms. I was wreaked, and everyone noticed. I also had a nice dose of night sweats. I’d awake between 2 and 4 am every night wringing wet. I was so wet on the first night of these sweats, I had to have a shower and wash and dry my hair. I then had to change the bed and put on a fresh night gown. It happened night after night. I went to the local GP, who was new. The doc who had help diagnose my sarcoidosis had retired. The new GP did nothing. I was appalled! I had to make an early appointment with the immunologist, with a wait of three weeks before I could see him. In the mean time, I had facial numbness, pain and swelling of the face to contend with. I had difficulty eating, and was living on Frosty Fruits. When I finally saw the immunologist, he saw the remnants of facial swelling, and also found the glands still up in all the places I complained about. He was satisfied it was sarcoidosis, but didn’t know what the facial swelling and numbness was. His best guess was shingles, but I had no evidence of blisters. He gave me some Acyclovir and Tegretol, but these didn’t help. He put my Plaquenil dose up to 400 mg, but didn’t want me on steroids. I was worse now than ever!! No Steroids?? I really freaked when I had a glass of water and noticed it turned pink. My mouth bled at the drop of a hat. The immunologist sent me to a facial surgeon and then an ear, nose and throat man who was a specialist on the facial nerve. The ENT diagnosed the facial swelling, pain, and sweats as Heerfordt’s Syndrome, a form of sarcoidosis. He also noted that I had episcleritis of the eyes and suggested I saw an ophthalmologist and get some steroid drops. I told him I knew it was Heerfordt’s, but I wanted to hear it from a doctor.

As soon as I went off the prednisone the following spring of 2005, the Heerfordt’s began to rear its ugly head again. I was now seeing a pattern with sunlight and heat exacerbating the sarcoidosis, and I had discussed it on sarcoidosis forums with people who had noticed similar problems. I had heard that vitamin D wasn’t the best thing for this disease. The immunologist I was seeing did not believe the problem was occurring again so soon. His attitude was that I had been on medication, therefore, how could it be happening. This non-belief is a frequent problem for many sarcoidosis sufferers. Despite the medication, my blood results were now showing evidence of sarcoidosis. I was anaemic; I had an eosinophilia and lymphopenia. All these suggested chronicity, despite the fact I had been on Plaquenil and/or prednisone at times.

As I seemed to be getting worse through 2006-2007, I asked my SUHS GP for a referral to another specialist. This time I let her choose. She sent me to a top rheumatologist at Concord Hospital. He took my history, examined me and then announced that he thought I had Sjogren’s syndrome. I thought, “ we go again that old chestnut”! At least he ordered a chest x-ray and some blood tests. When I went back, the report on the chest x-ray was that the sarcoidosis had spread to the lung proper, with parenchymal changes apparent. The bloods showed raised ACE and inflammatory makers, but Sjogren’s and other markers were negative. I also had a low iron level.

As by now I had been on Plaquenil for seven years, as well as odd periods on prednisone, the rheumatologist wanted to rule out gastric bleeding as a cause of the low iron. The rheumatologist wanted me to see a gastroenterologist and set up a gastroscopy and colonoscopy. He told me to stay off Plaquenil, Celebrex and prednisone until I had had these tests done. It was six weeks, heating up and late spring before I got the tests done. They found I had a helicobacter pylori infection which had caused gastritis and resulted in an inability to absorb iron. I also had eosinophilic infiltrates in the bowel, but had had a peripheral blood eosinophilia for two years. They suspected I had worms!!!! My treatment for this was Combantrin, followed by HP7 for the H. Pylori, and finally iron pills.

All this while, I was off sarcoidosis medication despite the fact I had active sarcoidosis. Summer had arrived with a vengeance. The Heerfordt’s was blowing up with greater pain and numbness than I had ever experienced before. I had to take 3 months sick leave from the University because sitting at the computer made the problem far worse. It generally made me nauseous as well. I was lop-sided and it affected my balance. Once again, it took several weeks before it was attended to properly. Most docs take time off at Christmas. I saw the rheumatologist, who gave me a script for Neurontin, which I never had made up as I knew it would not help. He also put me on Methotrexate just before Christmas. This was the very low point. Firstly the Mtx caused terrible mouth ulcers even though I was taking folate with it. Then I began to get UTIs. Everywhere I went, I had to make a bee-line for the ‘bathroom’. Mtx also made me severely depressed, so I felt worthless in a way I had never experienced before. Just before Christmas, I had blood drawn for the first time on Methotrexate. As I was beginning to bruise and get petechiae, the nurse at the hospital was very concerned and took the blood without a tourniquet. I would get several other large, black and long-lasting bruises before I gave this drug away altogether. I would get a burning sensation on the skin and a few hours later a black bruise would appear there.

My migraines were far worse and lasted longer while I was on methotrexate. The next nasty symptom to appear was numbness of the soles of the feet, and from the elbows down to the hands. Finally, I could take no more when I began to get this odd spasmy straightening of the feet when I was in bed of a night. Needless to say, the rheumatologist was very sceptical about all this. He sent me to a neurologist for an MRI, but I believe the methotrexate was the cause of all this, and not sarcoidosis. In the beginning of 2007, I had an appointment with an oral surgeon at Westmead about the Heerfordt’s, but I didn’t realise it would cost a bomb to see him. I didn’t have that kind of money on me, so I had to cancel the appointment and make another for three months hence. Chances were the problem would have cleared up by then. This was a low point. I didn’t realise methotrexate could also cause severe depression. I felt worthless and after a family argument, I slashed my arm with an odd, but handy shard of glass. I had a raging migraine and felt extremely unwell. I got up and checked more about methotrexate on the internet. That night I threw the lot down the toilet and started taking the Prednisone I had left over from the last outbreak of Heerfordt’s. Within two weeks, the Heerfordt’s had cleared and so had all the methotrexate side-effects. I believe had I not stopped taking the methotrexate when I did, I would have ended up with nerve damage and possibly even seizures based on the way my feet used to point at night. I know people who have no problems taking this drug, but I never would take it again. As methotrexate takes 6 months to have any effect, it was ridiculous taking me off drugs, and leaving me off them for six weeks while I had proven active disease, during summer, and expecting methotrexate to alleviate the sarcoidosis quickly!!  Mtx can take up to 6 months to moderate disease.

I gave the rheumatologist away and went back to the immunologist. He started me on Imuran as well as the prednisone I was already taking, because he finally admitted the psoriatic problems were caused by the Plaquenil.  The Imuran alone had no affect on the sarcoidosis which remained active most of the year. My ACE continued to rise on Imuran and liver function tests were not good. In late 2007, I had a routine dental exam where the dentist broke my tooth with a probe. Two weeks later, I broke a different tooth twice in one day. I had told the USHS doctor that my heart had been racing lately, with a pulse rate over 110. She referred me for a halter monitor test. When I went to see the immunologist, he told me firstly that my vitamin D was low (it was about 20nmol/L) and that the halter monitor test showed a QT wave abnormality. My phosphate level was also abnormally raised for the first time ever. I feared heart sarcoidosis, but a bit of research on the internet drew the abnormally high phosphate and QT wave abnormality together. What I was experiencing for the first time with sarcoidosis, was vitamin D dysregulation, but I only realised this with hindsight. For the first time, I was on a drug which did not control sarcoid 1-alpha hydroxylation of 25-D to the hormonal form of D called calcitriol. Both Plaquenil and prednisone could control this hydroxylation.

By now I had completed my PhD in History at Western Sydney and had been on Prednisone and Imuran for most of the year without my ACE level returning to normal. I had also put on substantial amount of weight from the prednisone. The doctor wanted me to take vitamin D. I bought it, but didn’t take any until I had fully investigated what both the Marshall Protocol people had to say about it, and also what other researchers had to say about it. I already knew too long in the sun would make me ill for days. When I returned to the immunologist, he knew I had not been taking the vitamin D. I realised, if I decided to the Marshall Protocol, I was not going to be able to continue with the immunologist. I had no time for forums or for researching other treatments while I was doing the thesis, but now I had time to investigate things properly. As the four key drugs used to keep sarcoidosis in check had failed to do so, I decided it was time for thinking outside the box. Plaquenil kept sarcoidoaia in check but had triggered psoriasis and psoriatic arthritis. Prednisone helped while I was on it, but when I came off it also worsened the psoriatic problems. Prednisone also caused weight gain, fluid retention, stretch marks, indigestion, insomnia and ‘roid rage’.  It was not a drug one could remain on indefinitely because of the numerous serious side-effects like diabetes. Imuran was obviously useless, and I have already outlined the problems I had had with methotrexate. My USHS doctor and I decided to give the Marshall Protocol a go.

The first six months on the MP were very difficult. My muscle strength declined and muscle pain increased several fold. However, it was what I expected on the MP. Once through the first six months, I began to pick up a bit. Getting out of chairs and into cars was difficult, and getting off the floor was almost impossible unless I had help. Making the bed was a huge exhausting undertaking. Walking from one side of the house to the other was exhausting without having to sit down somewhere. Shopping Centres were another story. I had to swing my upper torso wildly in order to move my legs. Things have picked up a little since then, but I was about to get a lesson in why it was important to follow guidelines in the ferocity of the Australian summer sun. After beginning on Olmetec in February 2008, I didn’t get a migraine until the December, but it was a bad’un. After the migraine subsided, I still had the scotoma which occurred during the migraine. The next day I decided to see my mother’s doctor, even though my USHS doctor had referred to a more Immune Therapy or MP savvy doctor in the city area. Mum’s GP sent me to Westmead hospital with a note saying that he thought I had a detached retina. It turned out to be sarcoidosis growing near my optic nerve. Two weeks earlier, I had a biopsy done on plaques on my knees which also turned out to be sarcoidosis. The hospital gave me a script for 75mg prednisone and calcium. I emailed my new doctor, and of course, she was horrified. She helped me get off the prednisone within two weeks. The prednisone helped the scotoma and it disappeared according to my ophthalmologist, whom I still see from time to time. I discovered I could not modify the MP to lower doses which would allow me to do gardening, and I also realised I needed to darken the house, and stay indoors.

I have had difficulty getting onto MP three antibiotics, but I am still persevering. Last summer the old phosphate problem struck again along with calcium. It started with a dive in 25D. I have realised just how dangerous D is, and am more than ever convinced that the problems I had on merely Imuran with phosphate and QT abnormalities, was also related to D and calcium problems caused by sarcoidosis. It was incredibly lucky I had not taken D on the immunologist’s insistence; otherwise I could have wound up with hypercalcemia. I think I did have hypercalcemi in January of 2011. I had had problems with constipation and gastric reflux, which I had been putting down to a helicobacter pylori infection. I then fell sick late in January, with a horrible metallic bitterness in my mouth, and vomiting. It was only in hindsight I realised that these problems were all due to elevated calcium and phosphate. Stupidly, I went off minocycline in order to do the helicobacter breath test. I began getting Heerfordt’s Syndrome, severe pains all the way to the waist, and my ACE hit a record high at 218 u/l. I learnt I needed to be more careful at blocking out light, and never go off or onto too low a dose of minocycline during summer.

I now dread the summer. But I’d rather take minocycline than drugs like Plaquenil, Prednisone, Imuran and Methotrexate. All these drugs have potentially as horrendous side effects as the disease themselves. Diabetes, blindness, pneumonitis, cancer as well as potentially fatal infections, just don’t stack up against a few bruise-like marks on my shin where iron has accumulated due to the minocycline.

What I have learned in my journey is if you have persistent symptoms which are not believed by a current doctor, either pester them until they take you seriously, or find another doctor. In most cases where symptoms persist, a cause will be found for them eventually. Just because a test or image is negative today, does not mean it will be negative next week. Imaging depends on how good the reader of that image is. Radiologists are incorrect in around 30% of cases.

Really, I believe I have got off rather scot-free with sarcoidosis, though in Australia, we have no strategies for finding the extent of the disease in our bodies like people in the USA are used to (if their insurance allows it). But we don’t know what the future holds remission, decline, early death...?

All we can all do is keep hope alive. I believe I had my first encounter with sarcoidosis at 21 when I was diagnosed with a pituitary adenoma. Along with having ‘sun flares’ strange attacks which cause temporary paralysis or blindness, sarcoidosis has affected my thyroid, pituitary, lacrimal glands, left parotid gland, thighs, skin, lung, lymph nodes, possibly kidneys and who knows what else. Perhaps I am probably best off not knowing.