The story so far (Part 1 of… several)

I should have started this blog two years ago. But since I didn’t, here’s how this whole thing started:

2011. What a year. In June I was bitten by a tick, while on a friend’s farm in Brandenburg. I didn’t even notice it at the time and when I developed a rash, I didn’t pay much attention.
In July I went on vacation for two weeks, visiting family, and while I was there one of my family members died. I don’t want to go into too much detail about that because I am not sure how much of this my family would want to share on the Internet. But I can tell you this: the funeral was on Friday, I flew back home on Saturday, arrived on Sunday and went back to work on Monday. Physically and emotionally exhausted. And with a big fat rash from the tick bite on my leg. I finally went to the doctor and was prescribed three weeks of doxycycline. That was crappy, I got a bad flu with a fever while I was taking it and just felt generally shitty. Stupid antibiotics.
In late August/early September I had… well, a nervous breakdown. Or something like that. A lot of crying, not a lot of sleeping, and it took a lot of discipline for me to get up and carry on. I’ve been in therapy ever since. And I don’t really want to go into too much detail about that either but I think it’s important to mention because I believe the ALS symptoms have a strong psychosomatic component. Which on the one hand is encouraging because that’s something I can work on. On the other hand it’s a little scary to think I might be THAT crazy…
Anyhow. Around the same time I noticed weakness in my left triceps (doing Pilates), weakness in my left hand (clipping my fingernails) and muscle fasciculations/twitching on my left upper arm and shoulder. My first thought was: “My osteopath will fix this.” But he didn’t. That’s when I got scared. It’s unusual that my osteopath cannot fix something. He suggested I go see a specialist for Lyme disease and a neurologist. So I did.
The Lyme disease doctor had an LTT test done and the results showed… something, so he gave me another round of antibiotics. Three more weeks of misery, and in the end the LTT test result was better, but the symptoms had not changed at all.
And the neurologist… oh boy. The first neurologist I went to was this awful woman who looked at me with an expression of hopelessness and said: “Oh no, I can only think of a really terrible diagnosis for you.” After examining me for barely 5 minutes! Talk about poor bedside manner. (And the fact that in the end she was right annoys me possibly more than anything else.) She wanted to send me to hospital for four days to get everything checked out. I’m not sure if she really thought that was necessary or if she just wanted to make good use of my private medical insurance… Anyway, I left her office, crashed a friend’s date, scared the guy away and cried and cried.
And the next day I called a different neurologist who I knew from work but had been shy about going to. Well, now I was desperate enough to call him on his private cell phone on a Saturday afternoon. I got an appointment with him the following Monday and he calmed me down and said : “All I see right now is a local problem, so let’s examine this bit by bit.” He did an EMG of several muscle groups in my left arm to confirm that something was indeed wrong. And it was. Then he ordered an MRI of my neck. That didn’t show anything. Then he prescribed physical therapy to get rid of neck and shoulder tension. That was lovely but it didn’t help.
And then… I insisted on having my spinal fluid tested because I was still afraid of Lyme disease. And being told that “that would be very unlikely” wasn’t quite enough. So I went to the hospital from December 21 until December 23, 2011. This was my first stay in a hospital and it was shocking and how on earth people get better in these places is beyond me. They tested my spinal fluid and didn’t find anything. And they did an excessive EMG of muscle groups in my whole body and apparently found several abnormal reactions, which led them to diagnose ALS. And in another shocking exhibition of poor bedside manner the doctor told me the diagnosis and went on to explain: “There is an unusually high incidence of ALS in football players. There was this one guy… Really famous… What was his name? He died from it.” At which point I interrupted and pointed out that I didn’t need to talk about someone who had died from this. Minutes after being diagnosed with it. What’s wrong with people?!
And this was December 23, so Merry Christmas…

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  1. Frank Böster

     /  November 4, 2013

    I hear you. Terrible bedside manners only work if you are a savant like Dr. Gregory House…but even then sometimes you’d make more than poor calls !
    Luckily for me, with the doctors I’ve seen in my life, that could only be said of about 20% – still too many. It should be something that could fail doctor’s exams – since there is no telling how much bedside manners contribute in the healing process ! Equally or even more appalling these days: mostly there is no time for real anamnesis ! About 10% (if you get lucky) is spent on tracking the patient’s situation and history. Every “old-fashioned” doctor will admit how much that can contribute to find the proper approach for the healing… As good as the medical system is in this country: we’d be better off if more professionals would subscribe to the standpoint that it’s a craft… rather than an industry ;-/

  2. Dearest Anja,
    You have been so brave and courageous not only because you went through this pain and uncertainty for a very long time, but because you made the decision to share the journey.
    I am proud of you.

  3. Thanks guys!
    Frank, that’s funny, I actually thought of Dr. House several times. And I totally agree about the anamnesis. Thankfully I’ve been lucky to see several practitioners who spend a lot of time on that. Which at this point is quite necessary because my medical history takes about an hour…


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