There are thousands of us living daily with partial or no diagnosis at all. Mix or undifferentiated connective tissue disease seems to be the "go-to" title when many of us show symptoms but really haven't met all the checked boxes that are seen in the large percent of people living with a particular diagnosis. Then there is a group having labs and x-ray studies showing one thing but symptoms don't go along with the criteria. It really can get frustrating when trying to receive help or start a treatment to help make you feel better.
Had a doctor who asked how important is it for you to actually have a diagnosis? At that moment my reply was "You can call it toenail fungus for all I care what I am needing is something to prevent it from getting worse". After some thought, a diagnosis is almost necessary for Insurance to pay and have validation for family, friends, and employer explaining why you feel so bad. Sad it has to be that way. There seems to be two groups of physicians though, one group who is dead set on meeting all the checked boxes before even a simple form of treatment can begin; the other are those that realize that even in medicine there are unexplained gray areas. These doctors realize that there are a group of us that the symptoms are so pronounced that they feel the need to look over the couple of insignificant labs that may not support a diagnosis.
Was reading a case study on a 40 y/o female who presented with all the symptoms of SPS, Stiff Person Syndrome but had a few blood results that didn't confirm. This doctor was one of many sought by the patient over a 6 year period of having significant symptoms. 6 YEARS of obtaining nothing at all to assist her with feeling better. He decided to go on and try some of the recommended treatments for SPS. Within a short period of time he and the patient recognized an improvement. I can only imagine how grateful she was that she finally found a treating physician who could actually THINK OUTSIDE THE BOX! My first response would have been on my knees thanking God for an answered prayer. Personally there isn't much I wouldn't give up to feel almost normal again. It's not hard to understand a little bit of jealousy for those who can do whatever they want when they want without advanced planning or rest periods. My norm is what they can't seem to understand and to be honest most of us search for new ways to explain our symptoms so they can understand. Example would be fatigue. Most want to say just go get some sleep but it isn't about sleep. It is like running on a low battery daily blinking red. The feeling most experience when having or recovering from the flu is the only way I have been able to explain this type of fatigue.
The last visit with a specialist I had ranks up in one of the worst top 5 in my entire life. It was a third visit, pain level was a 8, could barely walk without assistance, experiencing major tremors, nauseated, had recently experienced a major fall when walking along with a few other issues. It had been 3 months since he had ordered labs which I completed immediately and hadn't heard a peep from his office. I did call and request this visit which didn't sit well with him because his first question is why are you back? It was at that moment I wondered the same thing. Most ppl even without training realize that steroids are an anti-inflammatory and are used to help manage pain along with other neuro related disorders. A medrol dose pack is even handed to those with respiratory viruses. He evaluated my condition then started talking about ordering more tests without even going over the last lab results. I questioned him about ordering a medication being careful not to suggest anything so it didn't offend him. His reply was anti-inflammatories do not make you feel better or stop or slow down a disease process. That was when I realized not only did I find that brick wall, I crashed into it. So I stood up, gathered all the paperwork I had brought in and turned for the door when he asked if I was leaving? I thought that was apparent but obviously this required additional comments. The frustration was so overwhelming at this point that tears started flowing. My reply was we had reached the end of the road and felt that I needed to search for a different doctor. Laughingly, that was when he said, he could no longer treat me. I thought I had just made that statement but it goes along with how little he actually heard anything I said from the beginning.
I told this story so it could be understood that we all have to be in some type of control over our own treatment. It's ok to say goodbye to those MD's who have a hearing issue, refuses to allow you to be a party of the decision making, or even provide suggestions. It is hard enough going through what we do without the long waits to see a specialist, not be heard, not taken seriously. It is unfortunate that many feel they are doing us a favor by seeing us but in reality we hire them to treat us. Maybe soon we can have a list kind of like the Angie List for specialists in our areas that not only have a brain but functioning ears and a heart. Yes I am aware of a Dr list now, I am speaking specifically for those of us with chronic complicated disorders. Fingers crossed.
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