Hi all,
I’m new to the forum because I am waiting for a neurology doctor’s appointment to ask for PD testing. I’ve had mystery symptoms for the last year and a half now and all the other testing isn’t pointing to anything. It’s time for neurology to get involved. PD is my personal guess based on the collection of symptoms. I look forward to the doctor trying to prove me wrong.
Main symptoms at age 34 (female):
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Intermittent sleep disturbances—I can sleep perfectly for two straight nights, feel extremely tired for bed, and then the next three nights I don’t feel sleepy at all, melatonin doesn’t work, I feel restless and alert in a survival kind of way. Then, when I do fall asleep, I wake up frequently without ever falling into deep sleep. Exercise past a certain point can also cause failure to sleep restfully.
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Heart rate variability and paroxysmal blood pressure, especially at night, especially alongside insomnia—I’m developing some kind of sensitivity to exercise where my heart rate doesn’t recover from moderate aerobic exercise. I also will develop palpitations at random times and become very aware of a throbbing heart that I feel especially in my neck or stomach. I’ve also had feelings like I have an arrhythmia but these are very infrequent. The blood pressure issues can range from 149/98 while at rest or trying to sleep and then I will go into the doctor office and have 121/78.
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Sweating—This goes hand in hand with the sleep problems and heart rate issue. I sweat buckets from exercise. Just walking to a train to go to work will leave me with fogged glasses in an air-conditioned office because I’m giving off so much heat, and it will last for a half-hour before it calms down. Sweating and feeling overheated is very common at night as well.
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Sudden onset of intermittent anxiety and depression—I started experiencing strong attacks of anxiety that would come on like a panic attack. Those have calmed down a bit but I still have days where I’m shallow breathing, anxious, my whole body is tensed, and there’s no reason for it. I lead a pretty quiet and easy life and I feel intense physical symptoms of anxiety with nothing precipitating it. And then I can wake up from a good night of sleep and feel perfectly fine for a few days. And then it starts over again. Or I wake up deeply fatigued for no reason and I’m feeling lethargic, I don’t want to go anywhere, and I’m not thinking about anything. There’s no trigger for it. I’m just down. And then I sleep well and pop back up the next day in a new mood. This has all become really roller coaster-like over the last year and a half.
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Stiffness and issues with back, right leg, and right hip—I’ve had problems with back stiffness since I was about 16. But especially since turning 30 my hip flexors have become almost nonexistent. Even though I have a long history of walking everywhere, cycling (I used to bike commute for several years), running since 2015, and swimming (since 2016), I struggle with a perpetually tight right hip and a perpetually tight right hamstring along with more stooped posture over the last year. No amount of exercise or movement helps the hip and leg. I can sit down for 10 minutes in a crosslegged position and when I try to get up my knees and hips have “locked in” and it’s hard to move them. I’ve also noticed that my left glute has just stopped working. I walk up and down hills where I live and I never feel the left glute activating. I also struggle with my left hand weakening and feeling achy and stiff. I’m dominant right-handed but my left cramps up all the time and I’ll get pain in my fingers and knuckles. I’ve started waking up sometimes with clenched toes in my right foot. Also a burning right toe. A big deal is also climbing stairs. My legs, especially my right leg, weakens and becomes very heavy very quickly. Relatedly, going downstairs, I’ve noticed the sensation that I don’t feel quite as agile on my feet and I get off-balance and feel like I need to carefully watch where I put each step.
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I experience formication rather frequently. It’s reached a point where people ask me why I’m touching my arms or legs so much or if I have a bug on me. I have days where I’m itching myself every five seconds because it feels like I have something on my skin. It’s especially strong on my legs and also my face and is worse at night, such where the feeling of the blankets on my legs is too much sensitivity.
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Bathroom difficulties—Over the last year I’ve swung back and forth on a GI pendulum and experienced much worsening urgent urination or nighttime urination. It’s to the point that family have pointed out that I need to use the bathroom a lot, whether it’s when we got out places or just over the course of a whole day. When I did urine testing, the volume I turned in shocked the medical assistant. The nighttime urination has become a major topic with some nights where I have “attacks” of symptoms that all happen in swarms and I will go to the bathroom 3-4 times.
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As for tremor, I haven’t developed a regular tremor but I have noticed at least 3-4 instances over the last year of my left pinky twitching/moving on its own as well as my left pinky and ring finger going numb, mostly at night or realizing upon waking. The twitching will usually last anywhere from an hour to most of a day. I’ve had a few episodes of a stinging/jabbing/burning sensation in my left wrist as well.
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Finally, I recently went through covid and lost my sense of smell and taste for about six weeks. However, although it all finally came back, it is dramatically poorer than it previously was. I mopped the floor yesterday (which caused me back pain and wore me out within just a half-hour of sweeping and mopping) and I couldn’t smell any of the cleaning products I used in the room.
So far the only thing my bloodwork has confirmed is that I have high serum cortisol and high urinary cortisol but it’s not due to Cushing’s. Bloodwork and cardiac testing (EKGs, chest echo, etc.) do not show my heart is causing the problems. It’s not my thyroid, which is checked every time I visit a doctor and every time it’s normal. This will be my first time seeing a neurologist about everything that has been happening.