The Road to Diagnosis

June 2015:
I notice that my shoulders and wrists have been making weird ‘snappy’ sounds when I do certain moves (such as rotating them) and after some time, I book an appointment with an orthopedist. Following the consultation, a few blood tests and two MRIs, I am diagnosed with Joint Hypermobility Syndrome, a  condition which implies that my joints are too flexible and can extend beyond the normal capacity.

However, my condition is not painful or severe and at that time, there is no need to start any treatment. I am told to have the same blood tests again in six months, and come back for another appointment to check how the rheumatism is evolving.

January 2016:
As advised, I repeat the blood tests for the rheumatism but one of them indicates something which is out of the normal range.  The laboratory recommends two other blood tests, and they also indicate unusual results. At this point, the orthopedist refers me to a rheumatologist.

February 2016:
First appointment with the rheumatologist who reveals that those blood test results usually indicate lupus (Systemic Lupus Erythematosus). Yet, I have no other symptoms of the disease and thus cannot be officially diagnosed as such. (4 out of 11 symptoms are usually required for a diagnosis).

The doc’ concludes that I am prone to developing the lupus and while I should take several precautions (such as avoiding exposure to the sun), at this point, he does not recommend starting any treatment. Since lupus medication can have serious side effects, it is not advisable to take them unless really necessary. He further proceeds to explain to me the symptoms of lupus and asks that I come to see him immediately if they start to appear.

On the other hand, he notes that I have a mild scoliosis, meaning that my spine slightly bends to the side.

July 2016:
Without any apparent reason, I start feeling quite unwell:  achy joints and muscles, fever, mouth ulcers, nausea, dizziness, extreme fatigue… I spend most of the time in bed or curled up on the couch, realising that these might be symptoms of lupus.
A few days later, I see the rheumatologist and he confirms that “the lupus is getting active“.

That was the turning point: pills, lifestyle changes, regular blood tests, appointments, new symptoms, side effects from medication, emotional ups and downs, this blog…

Lupus is often nicknamed ‘the great imitator’ for the way it resembles other diseases and is often mistaken as such. I consider myself as being among the few and very lucky ones who were diagnosed early, as opposed to lupus patients who suffer for years, going from one doctor to another, before being finally able to put a name to their condition.

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2 comments

  1. Things get somewhat easier per say after you get the disease controlled. Yet, after 16 years with the disease, I still get new symptoms to deal with. Thankfully nothing too crazy, more along lines of inconveniences.

    Liked by 1 person

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