By chance I’ve been left without a doctor. My family doctor has unfortunately passed away, my neurologist on maternity leave and my home hospital is closing the “Neurology” department. In addition to that my physiotherapist is also gone and I get a new one, recently my very dedicated speech therapist has also moved. Meanwhile I have a new one and fortunately she is also great. The rest is in the works…
What I actually want to say is that I am allowed to start from scratch everywhere and explain what I have. And the medical staff, from receptionists to doctors. Medical staff. And it’s just nerve-wracking over time. Of course, for now, everyone thinks I have Parkinson’s. In my file it says “Atypical Parkinson’s” and I wish the collective term would have a different name, because everybody looks at me and says, Parkinson’s. And I have to smartassing, it also says “atypical” and that has a meaning. No medical doctor likes to be lectured, they have studied for years, I often hear from their text that they don’t know what they have to do with. I always ask politely whether they know the disease, which is then “naturally” the case. I would bet everything that they see a MSA patient for the first time, and from what I hear in their text, they don’t know, what they deal with. But I can’t just start lecturing them – I’ve been reading about this disease for months – because I would immediately make myself very unpopular.
A doctor once wanted to comfort me, because the result says “probable” MSA, which means from his point of view, that there is a probability that this diagnosis could be wrong. I tried to explain to him what “probable” and “possible” means, he declined, “you can’t understand, you have no medical training”. I thought I had to breathe fire.
I would be very happy to have Parkinson’s disease, and the diagnosis “probably” coud also still change, then I don’t have the plague, but cholera. Does that make that better?
This constant lecturing is very tiring. I completely understand that MSA is not known, I also have never heard of it. Doctors may have shortly mentioned it in their training. Even neurologists have never seen an MSA patient, and are overwhelmed. But that doctors are too proud to read up and admit that they don’t know what is it, it is really exhausting.
The fact that the authorities don’t know the disease is something you know the best. Everything is rejected for now, from the pension office to the health insurance company, and everyone hides behind their desks and works as prescribed. And we are running out of time.
There is talk of Parkinson’s and Multiple Sclerosis all over the media, without mentioning that there is a rare “sibling” of these diseases, called Multisystem atrophy. There are others Parkinson Plus Syndromes as well, for example PSP or CBD . A rare disease is one that affects 3 to 4 per 100,000 people. MSA is one of them.
That’s why I wish sometimes, this disease would have a prominent victim, so that it would attract attention and interest – and thus contribute to education. A famous person, in whom the general public would be interested. Such a wish is almost evil, actually I do not wish this disease on anyone. There are societies that tirelessly represent the interests of the sick, that speak for us, this is certainly a thankless and tedious work. Doing something for a handful of people, will not really make an impact. No one will become famous as a result. That is why I am so grateful to people and doctors, who have made this their task, there will be no credit for it, it must be a a true calling.
But sometimes I wish for a prominent fellow patient. Evil, right?