u/chaoticmeows

Be as detailed as you want. Google is giving me very vague answers when it comes to MOGAD and I feel like I’m not getting a good idea of what it’s like beyond a generic symptom list. I want to know an actual timeline of symptoms like what age it started and how it started, how it’s going and if anything seems to trigger relapses or make them worse. I keep reading that MOGAD has a very diverse symptom presentation from person to person so I’m genuinely curious. I’m currently in diagnosis limbo and suspect it may be MOGAD. I however really want to read up on what I can before I pay for the blood test out of pocket (no insurance so I’m hesitant to throw money at something so expensive)

I’ve been told by two people with fibro that my symptoms sound really similar to theirs but I feel like the timeline for mine doesn’t fit with what I’ve seen from everyone else? Does anyone have a symptom pattern like this?

My symptoms started at 16 much more mild at first, weird thumping in ear, nausea and shortness of breath sometimes after standing, constant insomnia, weird thing where when I would use the bathroom I’d have simultaneous stabbing nerve pain in foot and sphincter. At 17 I started getting nerve pain in tailbone and was convinced I had a herniated disc or something. These symptoms were never constant, usually a few days out of the month for a few months straight then vanishing multiple months.

Nerve pain in tail bone started returning again a few years later but I didn’t think much of it. Then I started my first retail job at 22 after a long period of sedentary and I had a full on neurological nightmare of a flare. Over 30 days of near constant fluctuating pain. Started with pain in tailbone for a few days then throbbing pain all over my body exactly like the thumping in my ear. After a few more days the throbbing pain turned into stabbing nerve pain all over my body. Would be in one spot then another then another within minutes or hours. Eventually just started being in multiple spots at once. When that calmed down I started getting pins and needles everywhere instead. Then the Gerd and ibs started. I would have indigestion every single day nearly all day for almost a month. Whenever I laid on my back which was now how muscle spasms all of the symptoms would flare up. Temporary vision loss that lasted a few seconds with back pressure, as well as pins and needles spreading all over my body, a tight feeling around my chest that felt like I was being squeezed. One day after multiple nights of no sleep I started to have half sided weakness in left arm, left leg, tongue. Slowly over a month and a half things went back to normal

After that flare I had lingering pain. Like before, never constant. Maybe a few days out of the month, but new symptoms, ones I didn’t have before the flare. Nerve pain my gums that would ache occasionally, stay in that location for multiple months vanish then a new location for multiple months maybe a few days out of the month. I would say most days I’m totally pain free. The only time things get really bad is when I overexert myself. Go walking around the zoo or out in the heat all day, I’ll feel fine doing it but when I lay down at night it’s like a mini version of that neurological attack, nerve pain and all.

It’s been about 2.5 years since that first attack and last month I had my second 30+ day flare that I’m still currently in. I was super sedentary for over a month since I thought I would take it easy after graduation but I think that triggered this second flare. This time it started with the nerve pain. It had been 5 months without any sort of neurological problems. First thing I felt was a few weeks before this second attack was a stabbing electric pain in my spine that lasted a few seconds then vanished. Then weeks later I started getting constant muscle spasms in my right foot. Eventually a few days into the foot spasms the full flare happened. Vision blurring in left eye, longer this time. Pain with movement in that eye. Muscle weakness in left arm and leg, pins and needles when I laid down. No temperature regulation, too hot then too cold. The intense stuff only lasted a day but after that the near constant gerd and ibs returned again for over 30 days straight. Like when I was a teen I started getting waves of nausea when standing. I’ve also been dealing with pain in my left ear where high pitched sounds feel like agony, even touching the lobe hurts. Slowly getting better as the days go by but slowwlyyy. I’ve lost like 8lb from the constant gerd and loose stools. If I don’t sleep I’m in SO much more pain. If I’m nervous I’m in more pain.

I’ve had xrays, ct scans, mris, a multitude of bloods tests, a nerve conduction study, all normal. I think my neurologist just sees me as a hypochondriac 💀 Whenever I hear about Fibro it’s described more like constant pain but I’m definitely not in constant pain. I’ve had symptoms for 8 years, and only two big long “flares”. They seem to be directly tied to how much I’m laying on my ass or overworking my body. 😭 I don’t really feel like I’m getting progressively worse. Is it worse than when I was a teen? Yeah but is it worse than 2 years ago definitely not. Would love to know if that sounds like how any of y’all’s symptoms history has been. I feel like the pattern is very relapsing remitting adjacent but I know fibromyalgia isn’t rrm. However the rapidly fluctuating symptoms isn’t at all how I would expect a spine or brain lesion to behave. No idea what to think.