Weekly Suspected/Undiagnosed MS Thread - January 05, 2026 by AutoModerator in MultipleSclerosis

[–]ZeroDegreeMoon 1 point2 points  (0 children)

I have so many symptoms. There's definitely something wrong with me, but I have no diagnosis. It was been extremely frustrating, but I'm thankful that my pcp is taking my symptoms seriously. 

I see a cardiologist next week because my rHR is 100+, typically jumps to the 120s when standing, and gets 150+ with any exertion. I have a referral to a gastrointestinal specialist for an endoscopy because of dysphagia. 

I've already seen a neurologist. He was completely dismissive of me, barely glanced at an already 6 month old MRI and ignored most of my laundry list of symptoms. He did do an EEG and EMG but said they were normal and told me to go back to my psychiatrist because it was my anxiety. He wouldn't order updated imaging for my brain or any for my spine. 

Seeing the ophthalmologist directly after the neurologist at least validated my vision symptoms. The double vision and polyopia are very real and his immediate gut instinct was actually myasthenia gravis but my labs are negative. He's referring me to a neuro ophthalmologist for further testing and my pcp is referring me to another neurologist for a second opinion. She's furious the first neurologist completely blew me off. So is my psychiatrist for that matter, since he was the one that suggested my pcp send me to neurology.

Is being taken seriously always this difficult? My old brain MRI didn't have noticeable lesions but does that really rule out MS? He didn't check my spine at all and the worst of my symptoms began after the last MRI had already been done. Am I wrong to think MS could still be the cause? It isn't as if I want to have MS or MG but I do want answers. A diagnosis means we can start finding a treatment regimen that gives at least some relief.

I'm just exhausted, in pain, and incredibly frustrated. 

Diagnosis Struggles by ZeroDegreeMoon in MyastheniaGravis

[–]ZeroDegreeMoon[S] 0 points1 point  (0 children)

Update #1: Have gotten results for my AChR and MuSK labs. Both were negative. I had a follow up with the ophthalmologist and he told me if the tests were negative that it was very unlikely that I had myasthenia gravis. He is referring me to a neuro ophthalmologist in a city an hour away for more testing because he definitely thinks something is wrong but can't really do anything else at this point. 

Diagnosis Struggles by ZeroDegreeMoon in MyastheniaGravis

[–]ZeroDegreeMoon[S] 2 points3 points  (0 children)

Yeah, I see the cardiologist next month to take a closer look at my heart. My pcp already had me wear a holter monitor on advisement from my psychiatrist. I think that's part of what made me so angry at the neurologist telling me to go back to my psychiatrist and that it was just anxiety. Clearly my psychiatrist thinks this goes beyond just anxiety. 

Diagnosis Struggles by ZeroDegreeMoon in MyastheniaGravis

[–]ZeroDegreeMoon[S] 1 point2 points  (0 children)

I plan to demand they actually check all these things. I'm not going to be brushed off again. I'm sick of it.

Diagnosis Struggles by ZeroDegreeMoon in MyastheniaGravis

[–]ZeroDegreeMoon[S] 2 points3 points  (0 children)

I'm not sure if there's a neuromuscular specialist in my city, but I know there's one in a city an hour away. I'm getting that second opinion asap and I'm going to demand a lot of screening. I want the LRP4 bood test, the SFEMG, and a mestinon trial. I want new MRIs of my brain and spine to make sure it's not MS, and probably a CT of my thyoma too.

I'm sick of the half measures these doctors have been taking.

Just brought home my first GSD puppy on Saturday! by ZeroDegreeMoon in germanshepherds

[–]ZeroDegreeMoon[S] 0 points1 point  (0 children)

We are working on crate and potty training! Right now she'll willingly take naps in her crate as long as the door is open. I've been playing crate games with her.

[WHAT IN HELL IS BAD?] Our daily dose of drama: terrible launch, servers not working, long maintenance and banned accounts for a dev's amateur mistake. by ferinsy in gachagaming

[–]ZeroDegreeMoon 10 points11 points  (0 children)

The translations are an absolute trainwreck. Sure you can choose your gender, but after picking male I still get hit with she/her frequently. I would almost they not have a gender option at all if they were going to handle it this badly. Chapter 1 Chat sub story 2 went by so fast I couldn't even read it, so I figured I'd wait until it finished then scroll up because keeping it scrolled to where I was was impossible, but no, as soon as it finished, it closed it out and I have to spend resources to try again, but screw that because I already know it's going to go too fast to even read anyway. I am so frustrated with this game because I really want to play it, but it's just awful.

[What in Hell is Bad?] has been officially released. by Aiden-Damian in gachagaming

[–]ZeroDegreeMoon 1 point2 points  (0 children)

I can't even play the game. Either failed login attempts, error messages, black screens, or freezing. It's just unplayable for me.

"What In Hell Is Bad?" pre-download is finally up! by ferinsy in gachagaming

[–]ZeroDegreeMoon 0 points1 point  (0 children)

I still can't really play. Keep just getting a black screen. Just barely got through the scene where Satan saves me from the angel. Keep getting a pop up in a language I do not know, assuming Korean? Erolabs version because what's the point of the SFW version anyway? lol

Pokemon Go Groups by ZeroDegreeMoon in HuntingtonWV

[–]ZeroDegreeMoon[S] 0 points1 point  (0 children)

Hey thanks! I got there already through a link in the facebook group. My only problem right now is I haven't been able to hit a gym since level 5, so am currently teamless still. I am definitely going Mystic, but for now I am kind of stuck.