Struggling to find a diagnosis in a health system that doesn’t care as much as it should…
It’s been exactly six months and three days since I first visited my Rheumatologist with hands that were sore and unable to do many of the things I was used to doing everyday, like holding full washing baskets and chopping vegetables. He told me I had early stage osteoarthritis and sent me away for blood tests and x-rays. It was right before Christmas, which was probably not great timing (but that’s when these things happen, right?) and he said, “You won’t hear from me unless something crops up in the tests.”
It wasn’t until I was half way home (driving in shock: not recommended. I mean who gets arthritis in their mid forties???) that I realised I didn’t know what to do next. Surely some sort of rehabilitation plan was in order?
Well, I never heard from that doctor again. Things started going down hill very quickly during the next few weeks. Over New Years, I started having trouble walking. At the end of January I was admitted to hospital with suspected MS. Results negative. Discharged with crutches. Still no rehabilitation plan.
A few weeks later my left leg went numb. Neurology pin prick testing showed lowered sensation. I was put on a 6 week waiting list for a private neurologist.
I would fall over without any warning every month or so. I went to three physiotherapists during this time who all gave conflicting advice. I finally saw the neurologist, who said I presented normally. She referred me for further neurological testing (1hr 40 minutes of being electrocuted and stabbed with needles for nerve and muscle response testing). Result: mostly normal. I paid for a private MRI because the public system didn’t want to know and I didn’t want to fall over again. The results came back in a convoluted and barely understandable letter that used words like orthrosis and spinal degeneration. I read it with a medical dictionary at my elbow and made extensive notes in the column. OK, I have arthritis in my spine. I felt relief because I finally had an ANSWER.
My GP popped the bubble later that night when he rang me (nice of him) to say that the degeneration in my spine was normal for my age and didn’t mean anything. Probably just stress (aka probably just in your head).
Back to the land of limbo and self doubt I went.
I saw the Rheumatologist again, under my own steam, because surely those medical terms above meant something? He wasn’t able to “add more to the story”, he said, but he did give me stronger pain killers (Lord, bless him, ’cause pills fix everything).
I saw the Neurologist again (can you hear their cash registers churning over?) who said I had sustained acute damage to my lower back which was irritating my nerve. She put me on Amitryptiline and beta blockers to normalise my nerve responses. Funny, I don’t remember the event which caused this damage. But, OK, I have an answer again. And a cure, to boot. Yipee! However, her follow-up letter to my GP didn’t quite correspond with her words at the appointment and, reading it, it once again made it sound like all my symptoms were the result of anxiety.
Never mind. Only forwards.
Today I got a routine follow up letter copied to me from my (now ex) Rheumatologist to my GP. Down the bottom of it, listed almost inconsequentially, is the fact that I tested positive for the genetic marker HLA-B27 for ankylosing spondylitis six months ago, the evidence of which also showed up in my spine MRI.
At this point the *slight* frustration I’m feeling is probably showing in the tone of my writing. I understand (see how I’m still trying to be reasonable here? Very generous of me, I think) that a full diagnosis takes time and probably nothing can be confirmed at this stage, but knowing my results is incredibly important for so many reasons, most of which I’m sure you are aware of.
I am a person who gives advice to others about how to handle the medical system. When I talk to those working in the system, they say, “Yes, it’s common for it to take months, even years, to get a correct diagnosis. Frustrating, isn’t it?”
But some really useful information about my situation came to light six months ago. Since then, I have wasted a whole lot of time and money (you have no idea and I am not going to do the math at this point) because I wasn’t told that information. Let alone the huge amount of stress of having an array of bizarre symptoms (sore heels is a symptom – who would have thought?) which at times leads you to think you’re going slightly mad.
What If I had never read that letter?
Not only should I have been told about the results, there should have been a conversation about what those results meant and what symptoms to look out for (for example, it never occurred to me to tell the doctor about my sore heels, as it seemed irrelevant, so there’s a piece of the puzzle that was left out due to bad communication).
I honestly don’t know what advice to offer people when this sort of thing is not only is known to happen, but is expected.
The only thing I can say is: be aware that it happens. Negligent or lack lustre doctors, administration muck ups, the mail system – blame it on of a hand full of suspects. It happens.
Keep asking questions and seeking answers when you know something doesn’t feel right.
No news is not always good news.
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