(C) Daily Kos This story was originally published by Daily Kos and is unaltered. . . . . . . . . . . April 14, 2023 Functional Neurological Disorder Awareness Month [1] ['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.', 'Backgroundurl Avatar_Large', 'Nickname', 'Joined', 'Created_At', 'Story Count', 'N_Stories', 'Comment Count', 'N_Comments', 'Popular Tags'] Date: 2023-04-13 FNDHope.org and www.neurosymptoms.org are good sites to learn more about FND. Happy Friday! Bit and I are supposed to be going for groceries on Saturday after work this week. Unless for some reason they send her home early today, then we’ll go today. She was off on a Tuesday of all things, and that’s her only day off. Doesn’t work well for groceries. Lots of other stuff going on. 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Monday Youffraita Tuesday ejoanna Wednesday Pam from Calif Thursday art ah zen Friday FloridaSNMOM Saturday FloridaSNDad Sunday loggersbrat May is going to be a very busy month. I have at least two, and sometimes three doctors' appointments the first three weeks, and that includes surgery on the 3rd, a procedure on the 11th and a new doctor’s appointment on the 9th with the rheumatologist. I told my transport driver today, I love him to death, but I will be very glad when I have fewer appointments and see less of him. He laughed and said that’s understandable, then said “see you Monday.” This isn’t helping my FND symptoms at all, add in the working on finding a place to move and packing, getting kittens fixed, and dealing with the issues requiring all of these appointments, and I’m about ready to pull my hair out. On the bright side, my hair is actually doing better. I’m using a leave-in conditioner/moisture treatment and it no longer feels like straw from all the meds and conditions. It’s starting to feel like hair again and isn’t so brittle. I suspect if I had the spoons to wash it more than once a week (and thus use the treatment more than once a week) it would be even better, but I have to work with what I can do. Another bright side is that my GP is taking these issues seriously and not just writing them off as FND based. So that’s a plus. For those not in the know, FND is Functional Neurological Disorder. The easiest way I’ve found to explain it is… it’s similar to Sensory Processing Disorder, but for the whole brain. The brain misinterprets signals from the body and then sends out faulty orders which may or may not also be misinterpreted as well. Anything the brain controls can be affected, including things like breathing, heart rate, blood pressure, and bladder/bowel issues. It’s *lots* of fun. And when something goes wrong, and you have FND, you never know if it’s something physical or just your brain playing tricks on your body. But, it’s safest to investigate it as something separate, otherwise you can do things like have a heart attack, or a stroke, or a lung problem and not realize it until it’s way too late. FND is the second most common reason for outpatient neurology visits, behind only migraines. It’s as disabling as MS or Parkinson’s, and it’s extremely misunderstood and undertreated (and most of the treatments are just treating symptoms, like with a cold). A lot of doctors think of it as a psychological problem, but recent studies are proving more and more that’s not the case. Many of us don’t have any psychological triggers at all. They think mine was caused by thyroid storm before they irradiated my thyroid (I went into storm 4 times). And all of my triggers for my symptoms are physical. And yet, we go to the ER with a problem, and they tell us to “stop acting out” and “control ourselves”, especially when we present with non-epileptic seizures. This leads many of us to resist even going to the ER, no matter how badly we may seem to need it. It also makes us leery of new doctors, who either have no idea what FND is, or (even worse) have an outdated view of it. I don’t mind educating doctors who have no clue, that’s easy. It’s the doctors who learned about it 20, 30 years ago when it was called “conversion disorder” that are the problem. The problem I went to the doctor for today *could* be my FND, or it could be a serious physical issue (which has a cure). My doctor had never heard of FND, and, after I explained it, he ordered more tests that will be done in May. He is fairly certain, from what he saw today, that it is probably a physical issue. I’m hoping it is, because if it’s FND, then this one, the only thing to do is treat the symptom, which will be a royal PITA, and it could last for years, or the rest of my life. People tell us we should be glad there’s ‘nothing really wrong’. But when something is wrong and can be treated, then it goes away. When ‘nothing is really wrong’ because it’s FND, you’re stuck with it, with no real treatment, just dealing with the symptoms, which can get bad, and sometimes life threatening, forever. Or it could go away on its own in a year or two, but you never know. So in what way should we be glad there is ‘nothing really wrong’? I have functional (non-epileptic) seizures, tremors, myoclonic jerks (arms jerk out to the sides, legs kick, etc), They can get bad enough that I have trouble feeding myself some days. I have really severe brain fog, and cognitive issues, including trouble with word recall, remembering things that I did or said, remembering medicine, etc. I use a lot of alarms and calendar reminders to help with some of this. Some things are just gone. I have some sensory issues, like if I’m having a bad day and I’m out in the rain, every rain drop feels like being hit by hail. It’s even worse if I’m having a seizure at the time. It also causes me to have higher blood pressure, it can raise my blood sugar levels (or the pain does, hard to tell it apart sometimes). I get a leg drag sometimes, usually on my left, partial paralysis, and my left arm likes to curl up behind my back and get stuck (I actually wear a wrist brace sometimes to stop this, because it brings my attention to it and it’s harder for my arm to twist that way in the brace). It can also cause things like shortness of breath, problems swallowing, gastroparesis, full body paralysis (temporary or long term), bladder retention or incontinence and bowel issues, etc. Some days are better than others for me. When this started, I was having 10+ seizures a day. Now I have around 4 a month or so. April is FND Awareness month. FND is mostly an unknown disorder, even though it’s not as rare as it was thought to be. Oh, and many people newly diagnosed with FND have long covid as the trigger for it. So there’s another gift that keeps on giving with Covid. Anyway, here’s a discussion of Bear Proof Trashcans. [END] --- [1] Url: https://www.dailykos.com/stories/2023/4/13/2163734/-April-14-2023-Functional-Neurological-Disorder-Awareness-Month Published and (C) by Daily Kos Content appears here under this condition or license: Site content may be used for any purpose without permission unless otherwise specified. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/dailykos/