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Fasciculations and weird symptoms: waiting for a diagnosis
Hello, everyone, and nice to meet you all!
I want first to apologize in advance if this post is useless or just a bother, but I’d like to share my symptoms and experience so far. I’ve not been (yet) diagnosed with ALS, nevertheless since a few months ago many signs, that seem to be very common to the onset of this terrible disease, started to appear within my body.
First of all, a tiny bit of self-introduction: my name’s Daniele, I’m 40 years old and I’m from Rome (Italy). I’m currently living in Tokyo, where I’ve moved 5 years ago for a working experience abroad. During this period as an expatriate luckily I didn’t have any particular health issue (I’m trying to follow a lifestyle as healthy as possible, given that I’m basically alone all the time and I don’t have any friends, apart from a few colleagues with whom I rarely meet due to the Covid situation and the remote work policy of my company), apart from a bad hip infection I had last year, caused by an awful bacteremia and because of which I underwent a surgery. The health care in Japan, from the pure physicians’ competence point of view, is a hard matter to discuss: in my experience so far, I’ve often met doctors whose only objective is to maximize the hospital/clinic’s “patient visited per unit of time” throughput and to prescribe as many medicines as possible, while giving very poor diagnoses (which 9 times out of 10 consist in “it’s just stress” or “you should rest for a while”). I’ve often found myself changing hospitals/clinics so many times since finding a good and competent physician or specialist is like playing bingo (plus the burden of keep paying the additional “first visit” fee every time). At the beginning I’ve learned (just in case, you never know!) a lot of the Japanese medical jargon (Medicine is one of the things I love the most) and this has been a great help in all the visits I had so far (hospitals with English speakers are fairly rare, although recently their number is increasing). Yet the times I’ve actually been the one guiding the doctor to a diagnose (no jokes!) are quite many. On the other hand, the medical facilities are very well-organized, the staff is usually amazing, kind and prone to help you in any possible way and you usually don’t spend too much time for a visit, even without any appointment.
Putting that aside and fast forward to March 2021, a morning I woke up and I’ve noticed that my left eyelid was twitching. This phenomenon lasted a couple of weeks, so I’ve decided to go to a neurologist in one of the hospitals close to my apartment (here there are either big hospitals or small private clinics, typically run by one specialist and a few nurses: the cost for a visit, no matter the place, is reduced to 30% of the total if you are covered by a health insurance program, which is usually provided by the employer) where I got an MRI of the head, which was normal. The twitching spontaneously disappeared after a few weeks. One month later I started waking up with my right arm completely numb and my wrist was also in slight pain. Payed another visit to the neurologist, got an MRI, a CT and an echography of the wrist (since, for each clinical test performed, the facility gets a refund from the government, usually the more the better) and it turned out I had carpal tunnel syndrome (maybe because of the posture when working on the PC). I wore a wrist brace for a couple of weeks and this issue too disappeared.
At the end of June 2021, both my calves started twitching badly and I got pretty scared: I’ve never had such a thing. I go to the gym almost everyday and part of my exercise is fast walking for 30 minutes on a 10% slope, so I thought that I was somehow overdoing it but I didn’t stop (I know, I’m a moron), since I didn’t have any cramps or pain yet. I’ve also thought that it could be due to dehydration and electrolyte imbalance, but no matter how much water I drank, this phenomenon was still present. During the day the frequency of the fasciculations was barely noticeable but, when I was asleep, it increased drastically. Ok, let’s go back to the neurologist: he ordered some blood test which came out with no abnormal values, apart from the creatinine-kinase which was slightly above the upper limit (I didn’t care too much, since I’ve had probably more than 30 blood tests in the past year and every time the CK was high, very likely due to the exercise done the day before the test). He just said to rest. And I didn’t, of course. Looking for a second opinion, I went to another neurologist who just “liquidated” me with a Vitamin E supplement prescription.
In July 2021 I’ve noticed that, when I bend my hands up and down (as if I’m trying to “blow out some fire”) they make some weird jerky movements. Same thing happened to my back: if I try to pick something up from the floor, my torso bend with the same jerky movements. Plus, I’ve noticed a slight tremors in both hands. And the fasciculations in the calves were still there. I went to another neurologist who focused just on the tremors and he diagnosed me with “essential tremor” and gave me some medicine to reduce it.
At the beginning of August I went to Italy to visit my family for a week and, as I came back here, I had to stay 2 weeks in self-isolation. Being forced to rest for 20 days, the fasciculations became barely noticeable (but I don’t know if restraining from exercise and the reduction of fasciculations are related). Funny fact: during the self-isolation period, I had to install an application, developed by the Japanese Ministry of Public Health, on the smartphone and everyday I received, at random times, video calls to check my position (which was also tracked by this app) and I had to send a report to my health condition (by the way, I was already vaccinated and had one PCR before going to Italy, one before coming back to Tokyo and another one at the Haneda airport).
At the end of these 20 days, I started again to go to the gym and the fasciculations gradually reappeared. At the same time, I was noticing that my stamina was gradually decreasing and that I was short of breath almost immediately. I began to have fasciculations at random places in my body, although barely noticeable and not continuous (on my cheek, shoulders, arms, back, chest, all over). That was the first time I began to grow really scared, so in September I went to the neurologist and he ordered an MRI of the head, clean as the previous one (as soon as I entered the examination room, I’ve told the doctor “So, is my head empty as I suspected?” and he laughed for maybe more than 5 minutes). Just rest, he said. And I didn’t, of course.
During September and October, I kept exercising while this overall fatigue was growing stronger and stronger. I didn’t and I don’t have (yet) any muscle weakness: I can lift the weight I could since a few months ago, with no difference in both limbs. Nevertheless, since November 1st I stopped doing any walking/running exercise, since my calves started to be in pain after that and
I’ve decided to take a break at least from that. I went again to the neurologist and I’ve explained him my fear of ALS: he performed a thorough examination (reflexes, Babinsky sign, postures and so on), a nerve conduction study and an EMG, all of which were clean (some fasciculations popped up in the EMG of the gastrocnemius and the tibialis anterior, though). Yesterday I’ve been to another neurologist, explaining her my fears and my condition but she said that, apart from fasciculations and “general fatigue”, without any evident signs of ALS, she couldn’t do that much (maybe she has a point, I guess). On Saturday I’ve reserved an MRI of the spine and next Monday I’ll have another EMG at a different medical institution. Let’s see.As of now, I still have fasciculations in both calves, stronger and more frequent at night, and diffuse, random, temporary twitching here and there, plus an overall fatigue and a weird feeling in the legs, as if they are somehow weaker and “burning” after walking long distances. I also feel a light pain in the back of my knees, as if I had a tendinitis, just above the calves.
The reason I’ve started thinking of ALS is that, over the past 4 years, I’ve consumed a huge amount of fruits and vegetables everyday (which is something I was doing in the past as well, by trying to follow a healthy diet as much as possible), especially broccoli and pumpkins (I love them) and I’m afraid that I’ve ingested so many pesticides that may have led to this condition. So yes, because of my gluttony (and stupidity), I’ve been so masochist to harm myself this much. I’m really the worst. And I’m even more scared, since I’m living on my own with basically no friends and relatives
here, but I need to keep lying to my family and saying “It’s all right here, I’m perfectly fine!” in order not to make them worry too much.That’s it. I hope I didn’t bother any of you readers too much and I’ll keep sending updates. I wanted to share another proof that there’s always someone so stupid that can harm himself up to this point for his gluttony and, what’s worse, not even by eating comfort food but something which is supposed to be healthy.
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