Sarcoidosis

What is a sarcoid or sarcoidosis sufferer? well, sarcoidosis diagnosis was by lung biopsy on Friday 15th October 2010 and skin biopsy on 23rd of December 2010. being diagnosed as a sarcoidosis sufferer was a real shock…

In 2000 my dentist could not fathom out what was going on with my gums though he did ask if I had diabetes? As my breath sometimes smelt and tasted somewhat metallic-ish which are symptoms, I got checked for diabetes and was all clear. Then at the Leeds dental hospital it was mentioned that my gums seemed to be over reacting to plaque and food etc. but no further action was required. In 2001 I told my X wife something felt not right with me, was it all in my mind that I just did not feel ok but continued with work and cycling. I told all this to my boss.

In 2002 I put all my problems down to a difficult divorce and subsequent lack of contact with my sons, without given too much detail I lost my job and began on a spiral the wrong way up. Fast forward to 2006 I started going to my Doctors with many various problems, most of these were put down to the personal stress of the previous 4 years. I decided to return to manufacturing (I had re-trained and qualified as a plumber since 2003).

Managing to get various contracts from CNC machine setter to improvements engineer to manufacturing management, I spent the next couple of years from job to job, some good jobs though still not settling within any of those organisations, to be honest it could be said that my diet (food and drink) did not help. A complete change of working direction – again – was required.

Start of 2009 a friend managed to help me achieve employment as an Art technician within her school, I also started part time employment as a healthcare support worker, towards to end of 2009 I had decided I found the support worker position more rewarding, something else though, while working in the school I could feel a little nervous when shouting and/or conflict happened in class etc. I was offered a full time position as healthcare support worker at Airedale Hospital.

Niche job

Great stuff, found my niche within the hospital, proper enjoyed the work and was able to offer my manufacturing background to help improve the hospital. After 4 weeks a work colleague mentioned my eyes looked terrible, and so did I feel terrible which ended up a few days on the sick, I returned and got on with my role again, few weeks later I had another bout of illness but it was difficult trying to explain that I just felt stupidly tired? Returned again and a few weeks later I had a proper bad tummy upset but it was more like cramps than diarrhoea, I returned again but a few weeks later it was the tiredness again, I wondered how am I going to explain this-unfortunately I made a slight excuse but not a complete lie-I cant lie as folks know, I just dislike lies… Back to work and then it was a visit to the BBC as I was taking part on the Genius program.

Well, my good friend drove us down to London (I have a few good friends!!!), we got to the studios but my eyes started feeling really really not good, this happened through out the recording-haven’t a clue what I looked like on the episode showing as I decided not to watch it. We got back to our hotel and I just needed to lay flat on my tummy with my face tucked well into the pillows, felt terrible.

On the way home he took me to the Accident & Emergency, they tested me and simply stated I was having a migraine! I told them I wasn’t as I just felt really really strange. I went back to work the next day, I felt terrible though but I just could not go on the sick yet again, then work colleagues and even patients started asking me what my strange cough was, hmmm-I had been coughing for a few week but ignored it. I drove home after my shift in June 2010 and haven’t been back since…

Sjogren’s syndrome

In those first few weeks I went to A & E 9 times, Doctors many times, still they seemed to just be guessing but mainly that I was having a prolonged attack of Mumps (my face had swollen massively), after 4 weeks and seeing all my Doctors the senior doc simply put his hands up and said they didn’t know and sent me straight away to the Ear Nose Throat & Eye department as a casualty. In the meantime I had started to really worry and my ankles had started to be swollen and blotchy.

Upon arriving I was seen pretty quick, was well checked and she said that I definitely had Mumps? But she wanted the main nose consultant to check me, he checked me and used the endoscopy to check through my left nostril, said he thinks the Mumps is correct but can I wait outside the room while the report is wrote, I still did not agree with him. While waiting my eyes completely went bonkers, proper painful (I am now glad they did) as by the time I went back in I told him, he had a look and tested for dryness, they were almost completely dry. Upon checking me again he mentioned Sjogrens Syndrome and sent me for x-ray and bloods (bloods again!!!), in the meantime my eyes recovered.

A few days later I was called to the Hospital, got to the department, went in his office and was told I had shadows in my chest and need a CT scan, I asked was it cancer, he did not know as it was not his department woah my world caved in, I was now naturally convinced its cancer, gone from Mumps to Sjogrens to Cancer in the space of a few weeks (the fantastic lovely guy who sang with my band had died from cancer just 3 months earlier). In the meantime I had my left Colon checked as I had some problems in that area – tummy full of air=erm…

A couple of days later I had stupendous pains in my eyes and blurred vision, went to the A & E again (twice in 6 hours during the night) and to my surprise they did not know what it was, the next day I went to the docs first thing, he said my pupils had fixed and were no longer functioning, so I was sent straight to the eye casualty department, BiLateral Uveitis was confirmed, they said it could be related to everything else my body was doing, no more driving – but I also can’t afford it now.

CT scan wait

That wait for the CT scan was the feeling of forever, one week is all I had to wait which is very fast, I had the scan and was told they will contact me (I have never been so scared in my life-I kept breaking down, I needed hugs). I got a call to go see the chest specialist. I went to see him early Sept, got sat down and he said it could be something called Sarcoidosis and appeared non malignant as amongst other things it is a cancer mimicking and masking condition, I needed a lung biopsy, but he wanted this doing by the top man!!! I told him about my ankles, eyes and other things, he had a look and called in other consultants, seems they had never seen all these symptoms on one person before?

Hmmm, 2 weeks and time for the lung biopsy, those weeks were completely terrifying and in all honestly lonely, I finally realised just how single and alone I was, hey I have the most fantastic of sons but they only stay with me a maximum 1-2 nights a week. My brother took me to the Hospital, finally went into theatre, had some drugs (the drugs should have subdued me so I did’nt remember it-more on that soon!), laid on my left side and oxygen on nose, throat sprayed, mouth vice’d and kept open, then I looked at this massive tube woah, “just swallow normally Stuart”, clug clug clug, arrggghhh, clug clug “your doing fine Stuart”  clug clug clug, thought I was dying and couldn’t breath, “breath nice and easy through your nose Stuart, your doing fine”, then I saw 3 smaller tubes inserted and taken out, wow what a wierd sensation but then they started removing the tube against the swallowing reaction, CLUG CLUG CLUG WOAH WOAH what is that all about. Once out of theatre a nurse and porter were waiting for me, they thought I would be subdued but me, I would not shut up talking about music, my music, Hendrix, Zep-talk about talking I was high as a kite ha.

I should have spent the night in hospital but I got dressed, asked my brother to come and pick me up, discharge notes and off we went.

15th of Oct 2010 arrived for me to go see the consultant, everything was confirmed and still in early stages, though I also needed a skin biopsy.

Shock

Yeah shock at my healthy self was something weird, in 2009 I took part in a government scheme (Biobank), I have all the paperwork stating I was in the healthiest fittest 3% of the age range 40-69 but now I am probably in the 3% unhealthiest. Its possibly that my forcefulness through the docs and various departments might be a reason why we have caught it early?

Think what my full thought’s are more and more, potentially I have had this a very long time hence the dentist in 2000 and my trying to tell my X wife just how ill I could feel, when just having a cold I was absolutely exhausted physically and mentally etc. though never believed by anyone especially the closest one. Did working with very ill folks (who happen to cough and splutter over you) finally trigger it to this?

My (October 2010) battle of adjustment to Sarcoidosis was just beginning, those very ill folks with this-well what do I say, my complete heartfelt thoughts go to you all and I honestly hope you do improve, having this I cannot pretend I hope you recover, it’s a truth of the word “meaningful”…

Stuart.

Back then, no I weren’t bonkers something was wrong with me…

My song titled ‘Sarcoid’ for all those involved with this condition.

14 responses to “Sarcoidosis

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  4. I have it too,diagnosed 6 yrs ago . It is hell and only one dr helped . I am 72 yrs old but feel 90 . A lot of cruel people around who think I am faking t o control others . I got it in my lungs but since have had heart failure, kid failure , PBC, every bone in my body hurts, have fibryomyaliga

  5. I was diagnosed with Neurosarcoidosis February of 2015. It is definitely a perplexing disease that can leave you feeling alone and frustrated. The Foundation for Sarcoidosis Research has bean a great source of knowledge and support for me. There are support forums on their website where you can talk to others who are going through similar situations and understand.
    Stuart, I think your site is great! It always helps me feel better to see a fellow “Sarkie” who is encouraging others who may feel like they may never see a happy normal again.

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  7. My husband was diagnosed with sarcoidosis last year with it being in his lungs liver and spleen. He was put on steroids and seemed to be making some improvement. He was feeling much better and was told to start reducing his steroids and it wasnt long before his symptoms returned. Whilst waiting for follow up he had a massive heart attack which required him to be given cpr and he was shocked three times before being in a coma. The apparent cause was cardiac sarcoidosis. We dont know what happens next byt having looked this up the outlook does not seem promising. Does anyone know of anywhere we can go or anyone I can contact?

  8. The cause of Sjogren’s syndrome remains unknown, but research suggests that it is triggered by a combination of genetic, environmental and possibly hormonal factors. It is believed that some people are more vulnerable to the condition when they are born and that certain events, such as a viral or bacterial infection, can trigger the problems with the immune system.-,`;

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  9. I have read your story and what you have been through. We have to keep fighting and believing.

    I was diagnosed in 2010. This all started with a dry cough. I was sent for a chest x-ray and they found I had inflamed Lymph nodes in my chest. I was then sent for a CT-scan which found my body is full of granulomas and I had to go for a biopsy. during the procedure I suffered a cardiac arrest. Luckily they was able to revive me.

    I constantly feel exhausted and soon get out of breath. I have had painful spots appear on my face and the top of my head, luckily they are now receding. I am now experiencing swelling and stabbing pains in my neck. I have had problems with my eyes being painful and dry. I have regular checks with an eye specialist. I also have type 2 diabetes and a heart problem.

    I have now had two full lung function tests and 3 CT scans and numerous x-rays. I just have to remain positive and motivated.

  10. I’m on phone so can’t see much but I read what u went through I have been ill 4 yrs with pains all over bad chest pains n coughin doctors at where I was back then thought arthritus after all tests they said unexplained pain , I also feel extremly tired n if wasn’t for my kids I would probly sleep most the time ,well moved just over year ago n caught cough for 3months ,back n forth to doctor over this time giving me antibiotics then finaly sent me for xray then had call of doc sayin he thinks sarcoidosis started seein specialist n regular xrays ctscans then decied biopsy time grab lump near lungs to test it surgeon in a diff hospital said I think lymphoma not sarcoidosis , when I looked lymphoma up all I cud think was I’m guna die what will happen to my kids , had biopsy n just had results back last week defo sarcoidosis just waitin go back to specilist now n been told go on sick by jobcentre adviser which I have started as I had 2month sicknote thing , never once been on sick but I tried gettin back into work and lasted 3months I was in so much pain my legs hurt a lot feel like they guna give way I’ve had days where get up quickly few seconds later they do giveway n head goes dizzy ,tireness is all time ,hip n back is often n my hands am terrible, if go near a smoker I’m bk at docs with chest inf ,I don’t smoke myself ,my hearing isn’t great either n I rub my eyes a lot n get sum horrible headaches ,I’ve lost weight to but if I’m guna be on steroids I’m guna put it all back on :(

    • Its a very strange serious condition, most medics or local GPs don’t really know about it. Frustration is also huge as we struggle to live life how we are used to? Do exercise sarcoid though, not overly but work it, it will help with managing weight as well as breathing.

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