Friday, May 9, 2008 by Susan.

I can be very outspoken when it comes to matters having to do with the health care system and there are certainly many different approaches to take when analyzing what goes on in regards to our health.

I was recently browsing one of my usual forums the other day when the topic of cyberchondria came up. I had not heard this term used before, but I can’t say that its appearance surprises me. There was even talk about it being added as a diagnosis in the next edition of the Diagnostic and Statistical Manual for Mental Disorders. Now this concerns me. Not because I don’t think that this may be a valid problem for some patients, but because I think we will all (anyone who consults the internet for help with their medical problems) somehow manage to earn this label, and perhaps not be treated appropriately by our health care providers.

With the complexity of many medical problems, and the focus of medical specialties, it can be difficult to get a medical professional to look at the big picture if a patient is suffering from a multitude of seemingly unrelated symptoms. Why should we not try to get some guidance anywhere we can if we are not getting timely, satisfactory answers from the medical community? I am not suggesting that we diagnose ourselves, but what is the problem with coming up with some of our own ideas and approaching our physicians with our thoughts? Some of the better physicians will actually ask you what you think your symptoms might point to.

I have been seeking a diagnosis for several years now. At first I was happy to just let medical care happen to me. At this point, however, I am getting more involved in suggesting my own ideas for further testing and rule out of conditions that the physician may not have been familiar with. Personally, I plan to continue this way until I have an answer.

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Wednesday, April 16, 2008 by Susan.

Well, I managed to live through waiting for the testing to happen and now I wait for the results.

Tom and I arrived at the medical center at 7:45 am yesterday for my 8:00 appointment for my Autonomic Reflex Screen. Naturally, they weren’t ready for me until 8:20, even though I was obviously the first appointment of the day. I had very carefully followed the prep instructions that they had sent me by mail. I was off of some medications for a week, some for a few days. I had no caffeine, or anything else that might mimic ANS issues. I was glad to be getting the testing done, because I have been working towards a diagnosis for several years now, and now I was anxious to get it over because I wanted to be back on my meds.

It was an interesting experience and the autonomic technician (Ken) and I shared some humor over some of the seemingly Sci-Fi inspiration for some of the tests.

Ken was very good about explaining each test and how some are used as an indication of small-fiber neuropathy. The first series of tests involved my bare right foot and indicating to him when I notice ‘Just-Noticeable-Differences’ in various sensations. The instructions required following a display of a green light and the number one with a ‘Yes’ or ‘No’, and my brain-fog caused a challenge right away, as I had trouble the first time out with this seemingly simple instruction. It did not seem as though we got off to a good start, but I rallied, and the rest of the test went smoothly from that standpoint. The first test of this series was checking to see if I noticed a vibration in my foot. The second was checking to see if I could feel a cold sensation on my foot. The third was a little more complicated, because it tested for heat/pain sensitivity in my foot and I had to use the 0-10 pain scale. There was one particularly painful moment, but all-in-all was easy enough to get through, though I could feel my ANS trying to act up in my queasy stomach reaction to some of the heat/pain portion.

On to the second room and the bulk of the testing.

Ken informs me that we will be doing a sweat test, some breathing tests, and finish up with the tilt table portion. He starts by having me sit on the table so he can begin attaching monitors for heart-rate. I then lie down so he can attach the electrodes for the sweat testing, and he affixes a cute little blood pressure cuff to my finger to monitor my pressure throughout the testing. One, little problem with the cuff, it can’t pick up my pressure because my hands are too cold. (The rest of me is quite warm at this point.) No Problem. He warms up some little heat-packs in the microwave and places them under and on top of my hand and the cuff comes to life.

For the sweat test, the skin is irritated by the electrodes and acytelcholine to stimulate sweating. They want to know if I am sweating properly. This is an odd sensation, sort of like pin-pricks for about five minutes, then I get to wait another five minutes while I am hopefully sweating the three small areas of my skin chosen for this task (one on arm, one leg, and one foot). When he removes the devices, they leave odd, circular marks on my skin, which leads to some joking about alien abductions.

Next, I get to do some rhythmic breathing. They are assessing how my blood-pressure and heart-rate respond to the deep, rhythmic breathing. I am lying down, facing a series of green bars and synchronize my breathing with the blinking of the bars. This is followed by breathing into a tube to maintain a certain pressure for 15 seconds. I have to do this three times, with time between each round for my vitals to recover to baseline. This portion is leaving me very lightheaded, which explains why they have me lying down for this.

After this, Ken prepares me for the big finale, the tilt-table test. Another technician and the neurologist join us in the testing room for this event. Once again, I relax to get back to a baseline, then when everyone is ready, I am tilted up (not sure how far, but not to a full 90 degrees). My vital signs are monitored for a time before the table is put back down. The testing is done, and the wait for results begins. I leave the lab feeling woozy, nauseous, warm, and a variety of other symptomatic ways. But I am also starving and get Tom to take me out for some brunch before we head home and I sleep for several hours.

Hopefully this will give us some answers. My internist is to be calling me sometime in the next week with some feedback. In the meantime, I am back on my meds, and more tolerable to be around.

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Sunday, April 13, 2008 by Susan.

My apologies for being MIA for so long. My focus these last few months has been quite narrow as I have been seeking out answers for my health issues. At this point, however, I am seeing some progress (although that may be premature) and am expanding my day-to-day activities somewhat.

I thought I would take this opportunity to let you know what is up with me.

This week, I am going to be having an Autonomic Reflex Screen to assess how well my autonomic nervous system is functioning. I have pretty much already diagnosed myself as having some sort of dysautonomia, but am looking for confirmation from the medical community. Throughout my life, I have had periodic ‘odd’ episodes. They are odd, because it can be difficult to relay to others exactly how I experience them. The fainting is straightforward enough, but the trigger for the faints is a bit more tricky to understand. I can see the faint coming, and have learned pretty well how to ward them off, but there seems to be a mis perception among others as to the cause.

But, like I said, the fainting is really only the most obvious manifestation. What is harder to explain to others is the general unease, the fatigue, the light-headedness and nausea, and the myriad other symptoms that seem to go along with this. As I mentioned, I have had these issues all my life, but when I got mono in 2004, the symptoms seemed to get to where they were much less manageable, and I have been seeking help ever since.

So, while interacting with the medical community has never been high on my list of fun things to do with my time, it has somewhat taken over my life lately. I am hoping that this test will give me a firm diagnosis and treatment plan, and that I can get back to a more regular life.

Thanks for your understanding and patience. I really do hope that I will be up to more regular posting in the near future.

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Friday, December 14, 2007 by Susan.

I thought that it was about time that I get going with my blog. I am hoping somebody will be interested enough to take a look from time to time. This particular entry will serve simply as an introduction.

Those who know me well know that I can have strong opinions in a number of areas, and that my current rants change frequently. To give you an idea, I really get going in areas of healthcare and politics. Mental health is an area of interest as well as various forms of entertainment. However, nothing is necessarily off limits. This blog may serve primarily as a sort of journal for me.

My hope is to have at least one entry per week.

Enjoy,

Susan

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