BabyAby123
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Good explanation of ME. People never seem to get it when I try to explain it.Pino said:Myalgic Enzephalomyelitis (ME), also known as Chronic Fatigue Syndrom (CFS) or SEID. ICD Code is G93.3.
About 30% of LongCovid cases fulfill the definition of ME, but it is treated as a new disease in most studies.
Usually it is described as "post-viral-multi-system-autoimmune-illness".
I personally explain it like this: "The unknown sister of MS", as about 80% of symptoms are the same.
MS attacks the CNS and ME attacks the autonomic / peripheral nervous system (ANS) mostly, main symptom of ME is PEM, post exertial malaise,
but it has got about 1000 symptoms, like MS has got also.
I got this after some unknown virus infection when i was 29 years old, i was told to be bedridden with 40 and dead with 50.
I was able to prevent this with an enormous amount of effort in all directions, but i can not escape the fact it is getting worse every now and than.
My incontinence is part of it or of some comorbidities.
It is hard to find a doctor knowing AND taking it serious, medical gaslighting is extreme with this condition.
These days i almost not mention it at new doctors, but only the commodities, like POTS, Polyneuropathy, Dysautonomia or Neurogeniv Bladder.
Sorry your doctor experience was so horrible. Unfortunately, it is becoming more and more common for doctors to just dismiss patient’s concerns. And even more rare to find a doctor that cares, listens, and tries their best to help. It is an ongoing issue across the world. Where I am in Canada, we either get stuck with very rude, dismissive physicians who couldn’t care less about your issues or symptoms, or we get no one as there is a massive doctor shortage. When chronically ill, that’s a tough option.
Are you able to get a second opinion where you are? I hope you can get someone else to pursue this further, and that you can hopefully get some answers