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- Sun May 24, 2009 4:26 pm
I'm going to list everything unsualy about my health for the past few years. Whether they are all related or not, I don't know.
I went to the doctor a couple of years ago for headaches and because I was just feeling so tired. I could sleep for 12 hours at a time and still be exhausted. The first thing she did was get some bloodwork done on me. When the results came back, it showed I had a positive reading for ANA. Because my father has rheumatoid arthritis, she prescribed me some vitamin B for the fatigue and referred me to connective tissue specialist. I had more tests done, and it was negative for RA, lupus, and basically every other connective tissue disorder. That doctor then sent me to a neurologist, since my primary complaints were neurological in the first place. I was examined for Parkinsons and it was immediately dismissed as a cause of my symptoms. The neurologist said it was just migraines, and that would also be why I've been having fatigue.
Now, I had migraines in my adolescence, and they were BAD. I would feel sick to my stomach, my hands would go numb, and I had lights "following" my eyes. My headaches aren't debilitating, just a nuisance. The best way for me to describe them are "pressure" headaches. Usually in the back of my head, or on the front above my (usually right) eye and around it. The Topamax I was prescribed didn't help, and I'm fed up with going doctor to doctor and wasting my time and money when I don't seem to get anywhere.
I've been trying to count up everything I can as far as health issues, and a couple of other things that I've thought might relate to this bigger problem: blindness and bad vertigo. 3 years ago, I was admitted to the ER because my right eye suddenly went half blind. There was nothing but a big splotch in my line of vision. The optometrist had no idea what happened. I've also always been a big rollercoaster fan... over the past couple of years now, I've been getting more and more dizzy spells. I even wake up in the middle of the night if I fall asleep completely straight on my back with such nausea it takes me forever to get back asleep. Often times, if my head moves too quickly in any direction, I have to steady myself and close my eyes.
Now, in the past few months, I've also noticed twitching in various parts of my body. At first it was mostly confined to my thumb and my eyelid; they would just twitch a few times. Now, I fell them elsewhere. Different places in my arms, and my thighs. They also last much longer, sometimes a couple of minutes at a time. Most of them are visible too.
I've also noticed I'm worse during the warmer weather/heat. I get so heat-exhausted and tired, I slug through most of the day, and my headaches are even worse. I've even been preferring cooler showers to warm ones.
Is there any chance these are all related? And how do I go about pursuing all this to a doctor? It seems I'm not taken seriously enough, but on the other hand, I don't want to be pushy or seem like one of those patients who thinks a splinter is somehow a precursor to cancer. What should I do?
| John Kenyon, CNA
- Fri Jul 10, 2009 9:53 pm
Hi there --
While some of your symptoms can be grouped into sub-syndromes (such as migraine) you would seem to have a larger galaxy of symptoms that are likely related in the sense that people with certain autoimmune diseases and/or dysautonomia have interlinked sets of problems. This requires a very astute and interested team, usually of rheumatologist and neurologist, as well as an internist to serve as quarterback and sometimes tie-breaker as well. It's a huge nuisance, usually no more than that, but can be a big drag on one's functioning and enjoyment of life. There's no clear single factor that ties these things together except the fact that many of the symptoms and groupings are seen in similar patterns in random patients.
In other words, it is poorly understood and sometimes difficult to manage, while not usually a major threat to life or limb.
A huge part of getting a handle on this sort of problem (which may someday arrive with its own clear-cut name and set of diagnostic criteria) is managing to find at least two doctors with equally high levels of interest. For instance migraine is never "just" migraine. It is always highly annoying at the least, and can at times be debilitating. A doctor who confuses quality of life and sustainable life isn't who you want managing a challenging condition. While work on this phenomenon has been going on for well over 40 years, the ball gets dropped often. If you can find a doctor who specializes in dysautonomia you'll be ahead of the game.
I wish I could give you a more concrete answer, but this is where we stand with this cluster of problems. They are severally recognizable, but also related. The problem is finding what that relationship is. Meanwhile you'll need enthusiastic medical help. I hope you're able to find it. Good luck to you. Please follow up with us here as needed.