An Episode of Sarcoidosis
The first month – In the first month of my episode, the initial symptoms were not entirely unwelcome. I had a loss of appetite and felt full all the time, and I was losing weight, but I wasn’t complaining, at least not initially! There was a slight cough but nothing more than that. Nothing that stopped me working or living normal life.
Second month – By the time that the second month arrived I was having fevers with extremely high night-time temperatures. My symptoms did not give my GP anything to go on especially as when I saw her in the daytime I had no fever! Blood tests showed abnormal ESR levels but she was not worried. She felt I would shake off whatever it was and the old scapegoat ‘a virus’ was blamed!
Month three I saw my temperature spiking during the day as well, so I rushed to see my GP and she recorded it at 41-43 degrees. She sent me straight to A&E! I had joint pains too along with body aches and fatigue and my cough was worse.
Into month four following my visit to A& E, I was referred to a respiratory consultant and had X-rays and blood tests all the time, and I now had chest pain as well as the temperatures. I had been on pain control medication but was told not to take anything until they arrived at a diagnosis. Life was rough! I shuffled along like a 90 year old and I didn’t even have the strength to drive.
By month five I was still having joint pains, body aches, chronic tiredness, coughing, chest-pain and fever. Finally sarcoidosis was being considered as a diagnosis but more tests were needed to confirm that. A biopsy of a couple of the lymph nodes was done along with a Mantoux test to rule out TB. I turned to Dr Google and frightened myself half to death! The online material suggested that sarcoidosis could possibly just knock itself out and I prayed hard for that.
Now in month six the joint pains, body ache, fatigue, coughs, chest pain and fevers were my constant companions. I switched to seeing my GP as a private patient to lessen the time between appointments, tests and the results.
By month seven there were longer gaps between spiking fevers. The other symptoms were still there, but less severe. I could walk reasonably normal again. The Mantoux test was a false positive result. (A positive is measured by the size of induration and a false positive can be caused by non-tuberculous mycobacteria or sometimes from previous administration of the BCG vaccine. A false positive can occur even many years after vaccination with BCG.)
In month eight, finally I was fever free and had biopsies from the lymph nodes under my right arm and from my left groin.
Month nine finally brought the diagnosis of Sarcoidosis and I was advised to start on steroid treatment. I was starting to feel a bit better, and scared of the side effects of steroids so the medics agreed to monitor my improvement before starting steroid treatment. Thank God I felt better and stronger. By the time that the symptoms finally all disappeared I had dropped 2 dress sizes from a 14/16 to 8/10. Every cloud they say! I breathed a huge sigh of relief but what I didn’t know was that I was in remission.
I thought I was all better.
I had no idea that it could come back, but it did, twice more with different manifestations. Sarcoidosis is always full of surprises! In the next blog I will look at the medication that is used to treat sarcoidosis and at other, more current health issues.
