Monday 24 March 2014

It Hits Home When You See It In Black and White

My GP's office called me to come in to help my doctor fill out the latest report requested from my insurance company.  Every few months they request a questionnaire to be filled out to see how quickly I can be removed from disability and back to work.  Because I see so many doctors Kelly (my case worker) did call me to tell me they were sending this report to my GP as they know he will receive reports from all the doctors and this will save them  time from writing to each one individually. 

I haven't seen my GP much these days I see lots of specialist but he seems to be out of the equation. I do enjoy my GP he has a wonderful sense of humour and we are able to banter back and forth but this time as I walked into his office and he started to talk to me he was so serious it caught me off guard.  He explained that he started to fill out the form as best he could but wanted to see me he had started to research what they now figured out was wrong and wanted to apologize for not hearing what I was telling him when I first became his patient.  How can I be upset with him?  I was appreciative for this show of compassion and told him he did not need to apologize as we talked we both realized that discovering one has a condition no one in this province had ever seen until  "me that special person walked in the door" ;-) is nothing to be apologetic for nor was it his or anyone else's fault.  I was grateful to him for knowing a wonderful neurologist he could send me to that figured it out so soon. As you know if you read my other posts I had many years behind me of not knowing and misdiagnoses. It was by chance that he was able to have an inkling before I left his office on the first appointment we had.

 We then talked about the difference between a syndrome vs a disease one question I did have and here to clarify the difference for those of you who may have been wondering too is a short synopsis:
The big difference between the words disease and syndrome is how they relate to the understanding of the medical community. A disease is a condition that has a known cause, a fairly consistent set of symptoms, and a quantifiable alteration of a person’s anatomy. A syndrome is a condition where there are a set of signs and symptoms that often go together, but the cause is unknown, and there isn’t always a measurable anatomical alteration. In some cases, a syndrome ends up being reclassified as a disease when scientists eventually understand the underlying cause and full effect. There are also cases where a syndrome is actually the result of a diverse set of different causes.

From a patient's perspective, there really isn’t that much of a difference between disease and syndrome effects. Patients suffering from a syndrome may experience all the same difficulties as people suffering from a disease, and it may be even more difficult for them because of treatments. Many syndromes can’t be cured, so the treatment is usually focused on symptoms only. Disease and syndrome conditions can both make people sick, and they can have a huge detrimental effect on a person’s quality of life.

As we finished filling out the three pages of questions I will share the last question asked: Describe the prognosis and your timeline for functional improvement or resolution of symptoms, and indicate when you will reassess your patient for progress in functional improvement.

The Answer:
Unknown prognosis for improvement or resolution.  More testing pending with neurophysiology.  Unfortunately likely poor prognosis, condition may be permanent and degenerative.

Question to my insurance company...Think I'll be off disability anytime soon and back in the workforce? 

Me: I already knew that answer, and I like how he gives me hope by saying "may be" but it still hurts and hits home to see it in black and white.

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