NML's Disease Sarcoidosis

I get quite a few emails asking me for more information about my illness and exactly what has happened to me, so I hope that I answer those questions here.

What is sarcoidosis?
"Sarcoidosis is also commonly known as just 'sarcoid'. In this condition areas of inflammation may appear anywhere around the body. The most commonly affected areas, however, are the lungs, skin, eyes and the lymph nodes. One area alone may be affected, or many at the same time.
Sarcoidosis is believed to be one of the autoimmune diseases where for an unknown reason the body attacks itself. Why this happens isn't clear, but infection often precedes the first signs of the disease.

Although it may occur at any age, young adults are far more likely to develop sarcoidosis. It sometimes runs in families and those of Afro-Caribbean descent are more likely to be affected."
Source: BBC.co.uk

How long have I been ill for?
I have been continuously ill for almost 3.5 years now (since the summer of 2002) but there apparently may have been indicators throughout my life. Thinking back to the fact that I had chicken pox for almost 2 months when I was 8, I think the writing was on the wall with this one! I have also had a lot of mystery ailments which could probably be explained away with my mystery disease.
How did I know that I was ill?

I had a mystery rash three years ago which covered my upper torso and was blamed on my immune system reacting badly to something as simple as a cold, but no further explanation given. Whilst going through a difficult time with my ex, I started to have night sweats, dizziness, nausea, terrible migraines, an aversion to the pill, really bad stomach aches, terrible fatigue. I broke up with the ex, graduated, went back to my old job, job hunted, started a new job, lived with my aunt for a month, flat hunted and then moved into my new place.

Within 2 months of the break up, my right eye flared up (red and sensitive to sunlight). I had over 15 flare ups and the doctors refused to take me seriously and told me it was a mild eye infection. By Christmas 2003 I could barely read a road sign or a tube map. I had another flare up 22/12/03 and was sent to the emergency eye hospital where I was diagnosed with uveitis (no explanation given so assumed it was an eye infection), given medication and sent on my way, having no clue of what was in front of me. I spent Christmas at home in Dublin with my family just staring at me as apparently I looked so ill and like I could barely see (I couldn't).

What are the official symptoms?
"Organs Involved, Effects and symptoms
Lungs/respiratory tract: Difficulty breathing, which may be severe enough to mimic asthma in up to 10% of patients. Nasal stuffiness
Lymphatic system: Enlarged lymph glands; usually non-tender. Rarely cause problems, unless they impinge on vital organs
Heart: Serious heart problems occur in 5-10% of patients, causing abnormal heart rhythms in half with cardiac sarcoidosis.
Congestive heart failure: causing shortness of breath, fluid retention, etc. Pericarditis (inflammation of the covering of the heart), causing chest pain
Skin: Skin problems occur in ~25% of patients. Vary from small discolouration's to raised nodules. 'Erythema nodosum' (raised, tender, red nodules) is the most common skin effect. Nodules may occur in scars and tattoos
Eyes: 25% of patients develop eye problems - 'Uveitis' is inflammation of part of the eye, resulting in blurred vision, avoidance of light and excessive tearing; it usually clears spontaneously in a year. Occasionally sarcoidosis of the eye causes blindness
Nervous system: Affected in 5% of patients. Facial palsy of one side of the face is the most common. Any part of the nervous system may be affected.
Kidneys and endocrine system: Granulomas rarely occur in the kidneys. However, kidneys may be affected by kidney stones/begin to fail, as a result of hypercalcaemia (excessive calcium in the blood) that occurs in sarcoidosis
Liver: Granulomas involve the liver in 40-70% of patients, causing liver enlargement in 25% of cases. However, liver failure is rare. "
Source: Medic8

How did you they diagnose me with sarcoidosis?
I started on a course of steroid eye drops in January 2004 and on one of my visits there were lots of doctors standing around oohing and aahing and I heard them mentioning the word 'attack'. 'What exactly is it that you're saying I have? Don't I have an eye infection?' to which my doctor answered 'You have uveitus. You're immune system is basically attacking your eyes because it thinks that your eyes are foreign bodies.' I had to leave as I felt like I wanted to be sick. I had blood tests which showed a high level of an enzyme and then they sent me for a chest xray. I was completely confused by this and that's when they explained the link between uveitus and sarcoidosis. The chest xray showed a hell of a lot of shadow in my chest and around my heart.

How did I end up on a year long course of steroids?
By the time I ended up on my steroids, my spleen was grossly enlarged, I'd had another attack of uveitus, I was extremely short of breath, I struggled to walk without being in pain, my body was covered in lumps and a particular lump on my back had left me in pain for 2 months but to name a few of my symptoms. My weight had plummeted even more and I was a very scrawny 6.5 stone (91 pounds).

Did the steroids help?
No disrespect to the makers of Prednisolone, because they did keep a lot of my symptoms at bay, but steroids don't resolve the issue, they just suppress it. My body became bloated with water and I also got a moon face. I have stretch marks all over me and I still had a lot of pain and a number of infections for which they didn't want me to take antibiotics for. My hair went really thin, then really thick, my joints were quite inflamed and I had a sore throat for 2 months. I finished the steroids in June and was quite ill initially but have settled down.

How do I feel now? (May 10, 2006)

I found a lump in my neck on my 28th birthday last year which explained the nagging pain I'd had for 10 days in my neck and shoulder. I found other lumps and I have struggled on and off to walk without pain. I've been told by friends that stay over that I react to pain in my sleep.

I do believe that the symptoms were bound to return to an extent once I finished the steroids and one way or another, I will get my immune system to rally. Going back on steroids, which is what the doctors said would happen if I was ill again, is not an option.

I started kinesiology and reflexology in August 2005 and the impact it had on my illness within days was scary. I started drinking two litres of water a day which stopped the pain in my joints within two or three days of me starting, plus I had a drastic change of diet. I don't drink alcohol, fizzy drinks, or eat chicken, pork, white bread, nuts and quite a few other things. This is not something I recommend for everyone as they are personally the things that put my immune system under stress due to an intolerance.

My company gave me a slightly shorter week for a couple of months as I really struggled with my energy levels but from December 2005, I decided to return to normal working hours. I returned to work in January 2006 after the Christmas and New Year and for some reason something had shifted and I didn't feel so tired and stressed out about work and started to feel normal again.

At the beginning of February 2006 I started acupuncture and the complete turnaround in my health is startling. I am now leading an almost normal life with weekly sessions of acupuncture where I have had needles in some very embarrassing places… Every single needle has been worth it because I have energy again, I can wake up without feeling like I have been run down by several buses despite 8 hours sleep, I LOOK healthy and even though I am black…the colour has returned to my skin! The inflammation is settling down, I can walk and do normal things without being in pain and I feel mentally and physically like a different person and no longer have that malaise where you constantly feel unwell.

What now for NML and sarcoidosis?
My illness or disease (my friends and family hate me calling it that) is quite 'mysterious' as they don't know what causes it and there isn't a cure and they seem to know very little about it. Did anybody know that one of my favourite comedians Bernie Mac has been hospitalised with my disease? Also Tisha Campbell-Martin from My Wife and Kids has it and I read recently that a famous American sports person called Reggie White died of it.

Because I go to work and grimace my way through the pain and do my best to get on with life, people take it for granted that I'm fine. If I had taken long term sick leave from work then I think people would understand more, but I refused to, as I believed that it wouldn't help me to get better.
I was petrified that I'd end up battling this illness for years and I don't want to be on steroids again, hence my foray into complimentary medicines like acupuncture and kinesiology as I don't believe in chucking medicine at things in the hope it will go away and not actually get to the root cause. I would also like to create more awareness about this ridiculously mysterious disease.

If anybody has any suggestions about alternative therapies or raising awareness, please email me or post a comment on a post.

Please note that whilst I have tried complimentary medicines they are the things that happen to be working for me and anyone suffering with this disease or anything similar should make the appropriate choices for them. I am not an alternative medicine evangelist!

Created May 10th 2006