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Trip to the charite in Berlin, part 7

Although I had delivered the statement “the reason I ask is because of the PACE trial” in my best up-speak, implying questions such as “Have you heard of the PACE trial?”, “What do you think of the PACE trial?” etc etc, Dr Hanitsch, unlike my blood, was not to be so easily drawn.

If one day I am asked to compile a list of the top ten neutral, non-committal nods that I have ever witnessed, at least I’ll know who to put in the top spot. Dr Hanitsch silently inclined his head without turning. That was it.

I can only speculate that his line of work had taught him how quickly he could find himself pinned up against the wall by a red-faced PWME screaming “Are you for us or agin us?” Or maybe he just didn’t feel like discussing it. Or maybe he was simply too busy. I will never know.

It was time to stand up and have my blood pressure and pulse measured. I had told Dr Hanitsch that at rest my pulse was around 50, and that when I stood up it shot up to 100 or more, so was looking forward to demonstrating it, but unfortunately the machine showed my sitting pulse at 69 and my standing pulse at 93, which wasn’t nearly as dramatic as I had hoped. It was then measured again 5 times at 2 minute intervals, where it settled back down to around 83. My blood pressure seemed normal.

I told Dr Hanitsch that I was in a self help group and posted on an online forum, and that there would be interest in my visit, did he have any objection to me posting a report? He said no, there wasn’t much he could do about online reviews anyway. I said that if he had any objection at all then I wouldn’t write anything, but he really wasn’t bothered.

“Do you divide your activities into 3 categories?” he asked, “Easy, medium and heavy?”

“I have seventeen categories” I replied. After a further brief exchanged we agreed that we could skip the pacing talk.

“You do know that we probably can’t do much for you don’t you?” He said as he walked towards the door. “Unless we find that one of your blood values is very abnormal” he added as if that wasn’t particularly to be expected. “Yes, I understand that”, I replied.

And that was it, after 90 minutes he left me with the nurse taking my blood pressure at 2 minutes intervals, and when she had finished she said I’d be getting post in 6-8 weeks.

I had been told to expect a 3-hour appointment, but I think we probably saved half an hour each on 1)the conversation about everything I’d tried so far 2)the conversation on pacing advice and 3)the conversation about there being not much they can do.

So, as one person at my self-help group asked after I’d given a half-hour presentation on my visit, why did I go, was it worth it?

Well, yes it was. I will get my immune system completely checked over, my file will be discussed with Prof Scheibenbogen, my blood will be used in CFS research. And I expect to receive a diagnosis from a credible and recognised institution, which will be handy if I ever need to apply for a disability pension (not currently on the plan), or just for shutting people up generally.

Plus I will be getting my report in 6-8 weeks, and they might find something …

Comments

Poor man tilt table do not necessarily reflect the truth. Thing is... The simple action of getting up, the movement itself can trigger compensation mechanism. A real tilt table would shpw the true autonomic reaction. I did both, at home on 7 consecutive mornings, showing elevation but not the 30 bpm. ONe morning I also fainted. Good thing I was standing by the bed. And then i had a real tilt table test by Dr Klimas which demonstrated POTS (that was roughly 5-6 years ago).being tilted was not a great feeling, but I was great it yielded results that could not be contested.
 
A well practised non-committal nod... What do you WANT it to mean?

Typical body not performing when the Drs looking.

I love the 17 categories of pacing!

And you've probably got a little red asterisk on your notes with 'asked about the you know what'.
 
Dear TiredSam, really enjoyed your writing, thanks! Please excuse my German English! May I ask, if you got the report yet and if it was helpful? Had my appointment at the Charité in June and am still waiting for the report after 14 weeks (was told 8-10 weeks - called them four weeks ago and they said they´re just so busy). So excited about the results although I know I shouldn´t be too hopeful. Thanks!
 
I really should finish this story but I've been not getting round to it for some reason. I got my report, later than the 8-10 weeks they said, but only by a couple of weeks. I got the diagnosis I wanted, they didn't find anything else, commented on my tests and made a few suggestions but nothing major really. Your post has made me decide to write part 8 just to wrap things up, coming soon ...
 
Dear TiredSam, when I read about your experience, I wondered if you have a private German health insurance, because my experience at the Charité was somewhat different. Nonetheless, I was really happy with my appointment and felt taken seriously for the first time in years. Dr. Grabowski was nice and understanding and told me it´s CFS and that I should take part in the study – but, at the same time, she was very stressed out and in a hurry, e.g.: “Sorry can´t look at you while we talk, we are in a hurry and I have to type, can´t type and look at you at the same time.“ I didn´t mind at all, she really seemed to care and give her best, and she said, she has just too many patients and doesn´t know how to make time for all of them. Our appointment only lasted about 20 minutes and we didn´t talk about what I´ve tried, pacing or research. That´s why I was surprised that Doctor Hanitsch spent so much time with you (even came to the poor man´s tilt table testing) and you got the letter (relatively) quickly. I hope this doesn´t sound like a complaint, I am very thankful for what the Charité does, just being curious. Thank you :)
 
Thanks for the info! I guess my appointment was on a very crowded day. Seems like they have more and more patients, because the homepage says they can´t even give out any new appointments at the moment.
 

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