Shift.ms is better if you're logged in

Hi Ms shift community 👋🏻 This is my first post but I have been reading many of your experiences for the last two years. I want to get these feelings off my chest. First I’d like to introduce you to my particular case. I have been diagnosed with ms on August 2020, after having wrong diagnosis of ‘brain disrhythmia,’ and epileptic medication such as Trileptal, Lamictal since 2017. Throughout the past 5 years I have had three depression episodes, and the latter two were really bad major depressive disorder episodes. I was losing my mind by the end of 2019, really tired of being so depressed for no clear reason. Healthcare and insurance were not on my side, to make matters worse. Long story short, in a desperate attempt to figure out why I was so depressed, and also because I was very skeptical of my former diagnosis and tired of having to take really strong anti epileptic pills, I went to Germany to find a new neurologist that was a friend of a friend. This neurologist was like my guardian angel. Just in time, he started giving me answers I was looking for. After learning about my depressions, my blurry vision episodes, and the cognitive problems I had been having, he decided to run all the necessary tests for ms. And he was right. All the medical analyses indicated I have MS and multiple lesions in the prefrontal cortex, which he related to my depression and cognitive problems, like really bad memory, zoning out in almost every conversation, and not being able to read or focus. I know I said long story short, but now I just feel like telling it how I remember it. Even though MS answered many questions, I was still in a very deep depression and the news of it just made me feel hopeless because it added these scary symptom possibilities to my life. After having good psychiatric intervention, therapy for months, and constant work on my mental health, I managed to get out of depression. Life became as colorful as ever. Since then I have been enjoying my life to the maximum, living each day to the fullest and appreciating the present. I also found an amazing hobby that makes me so so happy: hula hooping. Unfortunately, since I’m not a Resident in Germany, I had to find a new neuro where I live in the Netherlands. I don’t know if any of you are familiar with Dutch doctors, but it always seems like you have to beg and convince them to give you the care you need. Even when I told them the German doctor’s diagnosis they told me it was not right, and made go and get second and third opinions which agreed with the MS diagnosis until they recognized it 🙄 Every 6 months, my MRI scans keep showing new lesions. My first ms treatment was Tecfidera for a year but then my neuro change it to ocrelizumab infusions. Physically, I have not had any strong symptoms. Most of my symptoms could be considered invisible symptoms, like fatigue (!!), lack of balance, lack of coordination, difficulty walking at a regular pace (always been a very slow walker), and the very annoying cognitive symptoms. I hate feeling dumb but I am learning to be more compassionate with myself and to not judge myself for this. In reality, I am doing great. Every day I try my best to be relaxed, to be organized, to be healthy. But in the past months I have had some weird symptoms and my neuro seems to not consider them as MS and I just hate the uncertainty and I feel alone in this regard. For example, for many months now I have had no appetite whatsoever. I’ve had to set alarms to force myself to eat because I really just do not get hungry. In the past three days I have been experiencing very weird sensations in both my arms, specially the left side shoulder and arm. I do not know how to approach these changes in my body. I hate the anxiety and the fear that it generates in me. Should I insist on getting some kind of medical explanations? I keep thinking that if something happened to my arms I wouldn’t be able to hula hoop anymore for instance and that kind of thoughts just doesn’t let me sleep at night.