Dear @maarten , I felt like I was neurologically worsening from September 25th 2022 until January 2023. The downward slope was steeper between September and mid October, then the worsening was present but at a slower rate until January. Between September and October, I had internal vibrations that lasted for hours at a time and I was maybe awake and alert 5-8 hours a day. I had toe cramps 2-3 times an hour that had me screaming from pain, each lasting 10-15 minutes no matter what I did to relieve them. At times I feared the cramps would dislocate my toes. From October to January vibrations started fluctuating in intensity and duration, until they gradually decreased in both but I developed tremors and daily migraines. Cramps stayed the same, even occasionally occurring in my arms and hands. My employer was kind enough to accommodate me to do admin type work from home yet at times I experienced mild cognitive impairment where I struggled to do simple math or had difficulty recalling names (brain fog?) and I had extreme fatigue that forced me to end my work day earlier and head straight to bed. From January to April I would describe my symptoms as staying the same with small fluctuations here and there. I stopped working altogether in March….During this time I could identify a pattern of symptoms where I’d be waking up with twitching in my calves, start doing light house work before crashing and having to take a nap for 4-5 hours. Frequently I was too tired to eat, never had enough energy to prepare my own meals. Since September anytime I was ill with a respiratory infection (common cold? perhaps another round of covid?) I’d got worse with neuromuscular symptoms specifically tremor, twitches (including a new eyelid twitching limited to while I was actively sick), EXTREME exhaustion and muscle spasms but returned to my 2023 baseline within a week of recovering. I am certain the rapid worsening of neurological symptoms were not medication, electrolyte or dehydration related. From mid April I have been very very slowly improving in terms of energy. Twitching is limited to calves, toe cramps are gone, so is the cognitive impairment. Tremor is less severe except after any physical exertion. For some reason I believe exertion and a diet rich in carbs worsens the twitching.
What I have found to help me with feeling powerless affected by a disease that is so poorly understood, is to try to observe my symptoms objectively and use my abundant free time to explore scientific explanations and hypothesis then later brainstorm those with my providers, suggesting more tests or trial of otherwise safe medications as done in clinical trials around the world to see if anything would work for me. I understand every member of this community has ended up here following the same path in their capacity and I strongly believe your dad being a physician might find it at least somewhat empowering to take the lead in his care even if it does not lead to finding an immediate treatment or cure. As a healthcare provider I found struggling with a mystery disease with no prognosis quite humbling. I can’t decide if it’s the symptoms today or the fear of the unknown symptoms tomorrow that I struggle with more.
Wish your dad and everyone here healing and insight
Fiona