Tuesday, 2 July 2013

30 Day Chronic Illness Challenge Day 3

Day 3: How did you get a diagnosis?

Apologies for a late addition today! I have in fitting fashion been, as a friend of mine rather aptly terms it, "flaring all over the show".

(Diagnoses are a little like dragons to me - elusive, a little mythical but probably hiding somewhere. You're judging me, I can tell. Stop it.
My favourite of the D&D dragons, the Lawful Good Silver. Courtesy of draconika.com)

In my case as previous readers are aware this is in fact "diagnoses". They happened quite separately and in entirely different circumstances. I'll start with the Interstitial Cystitis as it is by far the simpler of the two.

I mentioned in a previous post my time spent under Gastroenterology, and during this time I had a fair few visits to hospital and in routine tests I kept showing up with an apparent water infection. Having had a run of actual ones in the previous couple of years I was a little skeptical - I'd describe the symptoms as similar but with enough difference that the sweeping ten second diagnoses were starting to pray on my mind. It took five courses of antibiotics doing not a damn thing for a previously unseen doctor at my hospital's GUM clinic (I'd long since given up hope with my GP of the time) to raise an eyebrow and write me a referral to Urology.

Which my then GP surgery promptly lost. Now I don't swear habitually, but I think I probably swore more in that moment than I had for the rest of the year up to that point put together. I was not a happy lady.

This prompted a very successful change of doctors surgery to a newer once which opened locally. I find it somewhat amusing looking back at how I approached my first appointment. I probably resembled a tightly coiled spring and was ready to bite at the slightest provocation.

My new GP gave me absolutely no provocation whatsoever. He listened to me recount the symptoms and talk about the lost referral, drew up a new referral request on the spot accompanied by words to the effect of "this nonsense has gone on long enough" and as I left feeling a little foolish he said something so utterly out of character from my experience with doctors thus far that it virtually floored me:

"Don't worry, we'll find out what's wrong with you. You're not going mad. Keep your chin up."

Two months later I went for an initial appointment with Urology, who diagnosed me with Interstitial Cystitis based on symptoms alone in under five minutes. A cystoscopy was considered for absolute confirmation but as I'd just recovered from a run of three internal cameras (all of which had caused problems in the aftermath) it was decided to my lasting gratitude that I didn't need anything else put in places it probably shouldn't go. Also, the rather frank and earthy description given of the aftermath of a cystoscopy rings with me to this day:

"Fair warning, it's like pissing glass for a week."

Remembering that discretion is the better part of valour I beat a hasty retreat.

(Baldur's Gate's Minsc on retreat - "There is no shame in returning another day with bigger swords!" - a nugget of rare wisdom found in the midst of screaming "Go for the eyes Boo!" at every opportunity.
Image courtesy of mmo-champion.com)

Diagnosing the Fibromyalgia which is by far the greater of the two in terms of effect was somewhat more long winded. I don't think this was anyone's fault really as it took a long time for the muscle and joint problems to be looked at in a separate light to the bowel issues. Once that decision was made (again under the new doctors surgery) then a long haul of tests began.

As my Dad has Rheumatoid Arthritis this was first on the list to be checked for. No inflammation markers at all, so onward!

Lupus? Really? But that's a joke on Hou- apologies doc, I'm sure you've heard this one already.

After the round of Lupus antibody tests came back clear along with several others (having five vials of blood taken made me seriously wonder if they were secretly farming it...) my GP seemed a little lost on returning for my next visit. In doing a general search for information on chronic pain she stumbled upon the tender point test which I'm sure fellow Fibromyalgia patients are probably familiar with. My understanding is that a definitive diagnosis is reached if a patient reacts to pain in at least 11 of the 19.

I forget how many the GP had tried when she had to pick me back up having fallen over and curled up in a ball until the pain subsided. She put a negligible amount of pressure on each point with two fingers, and the only description which comes close is like having white-hot fire pushed through the skin and into the muscles and tissue underneath.

Let's just say I never want to repeat the process. However I'm hugely grateful to that second surgery, as I firmly believe I'd be lost in the diagnosis loop to this day if they hadn't stepped forward and been prepared to think outside the box.

Sometimes a fresh pair of eyes and innovative thinking can be beneficial beyond words.

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