The Challenge of Living With an Undiagnosed Neurological Disease

Anne Weydert is an undiagnosed neurological disease patient and caregiver (her partner has multiple sclerosis) from Luxembourg who came to Hack Healthcare to share her experience and wishes. As a patient she’s a member of ALAN – Maladies Rares Luxembourg and an active member of Eupati Luxembourg.  

What is an undiagnosed neurological disease?

An undiagnosed neurological disease is a neurological disease that has been identified as a disease but does not have a clear diagnostic saying which disease it is. In my case I was diagnosed with multiple sclerosis, then Parkinson, then SLA, then small fiber neuropathy… A lot of diagnoses have made me stop looking for one. A bad diagnose means a bad treatment and could mean a bad outcome. I started having the symptoms of multiple syndromes nine years ago. “Luckily” I know about the hardships that come with some of these diagnoses, as my partner has multiple sclerosis. If I had not had this knowledge of the disease I would not have fought and today I would be in a wheelchair. 

What’s the current situation of undiagnosed neurological diseases  and their patients in Luxembourg like? Where is it heading?

It is a very difficult situation. People think that we are acting, even when we work. It becomes very difficult to keep your job and to go through all the medical check-ups with a disease that is not officially recognised, and even harder to get treatment. 

Not much has changed. Minds have to evolve and patients have to be more engaged. Doctors and decision makers’ attitudes won’t change in this context. 

I’m a member of two working groups on rare diseases and I see that doctors and decision makers don’t think from the patient’s perspective. They have to change their point of view. 

To take care of diseases like mine we have to leave our small country and head for different locations based on our disease (cancer patients, for example, usually go to Belgium). When you don’t have a diagnosis it is very hard to get the documents needed to be treated and reimbursed for these treatments. If you don’t prepare the documents yourself you can spend up to €1000 per trip just to get the appropriate paperwork so that our social security system pays for the expenses in the few hospitals they recognise. I went to Aachen, Germany, for more information and eventually a diagnosis, and I had to pay that amount for my first trip. After that I’ve done a lot of work to figure out how to do the paperwork myself. 

Which changes would you like to see happening in the way undiagnosed neurological diseases are treated?

I would like to see the same changes for all diseases: that the patients are taken seriously. Especially with neurological diseases where nobody takes us seriously until we are in a wheelchair because our symptoms are not evident.

Decision makers have to facilitate diagnosis and pay for expenses abroad so that patients don’t have to spend their time fighting.  

What advice would you give the participants of Hack Healthcare to provide solutions for undiagnosed neurological disease  patients?

Always get a second opinion, for all diagnoses. You have to be active in your disease, always taking your medication, reading the package leaflet of your drugs, asking questions to your doctors and not accepting everything they say. 

What brings you to Hack Healthcare? 

I thought I was going to participate online, but after Egle’s request I decided to come to do my part in changing the healthcare system, to explain what living with a chronic disease is like. Everything goes better when you are surrounded by good willed people. 

What would you like to see coming out of Hack Healthcare? 

I would like to see doctors believing their patients, worrying about them, and understanding that patients tell the truth. They have to do everything in their power to send their patients to the appropriate place to have a better chance to be diagnosed. The social security systems also have to fully pick up the tab, to pay for all health expenses.