u/Optimistic-Coloradan

Hi all - first off, very sorry that everyone is in this group. I’m writing on here to see if anyone has had a similar story to what my husband - 41 yr old has been going through.

The timeline:

Since late 2023, he’s had a positive ANA and his PCP referred him to a rheumatologist in Denver to see if he had rheumatoid arthritis because he had joint pain that would travel around his body and would flare up every few months.

May / June 2026 - he started getting the joint pain again, but then it switched to more muscular pain, and then in June, his foot was in shooting pain - he said he couldn’t put weight on it, and then began his back pain where he had issues getting up and down from sitting or lying down. He started developing fevers in late May that would last a couple of days and then would go away. But then, he started getting incredibly constipated which started around the time his doctors put him on Tramadol and Hydrocodone for the back pain. So much so that he stopped eating much because he was having such a hard time going to the bathroom. He would fill up super fast, but his PCP would keep running test and sending him stuff to help with the constipation, all while the drugs weren’t really helping his pain much.
- on June 17th, we saw that same rheumatologist again, because his PCP was saying this could be Lupus or MCTD. The rheumatologist, even though he had mouth ulcers, alopecia, red spots on his hands and feet, and the ANA positive marker, told us “you’re not a story for me to fix, I think you need to work with your PCP and pain management”. She did give him Gabapentin to see if that would help the pain, but it really didn’t do much.
- on June 29th, she agreed to have him start Plaquenil.

July 13-30, 2026: 1st hospitalization after I brought him to the ER, because he had a fever, had an increased heart rate and had some pain while peeing. They finally admitted him - it was our 4th ER visit since late May. They admitted him for a sepsis panel but then neurology and infectious disease got involved. After a ton of testing and MRIs, they diagnosed him with myositis (lumbar and thigh MRI confirmation) and Transverse Myelitis (lumbar MRI). They did a brain MRI, but that came back negative for anything. They immediately started high dose steroids through IV for 5 days, and then tapered to 60 and then 40mg. Everyone at the hospital kept saying this seemed to be rheumatological and to go see the rheumatologist again.

August 4, 2026: he saw the rheumatologist, who after seeing his 22 pound weight loss in 2.5 months and the results from the hospital told him he clearly had a rough last few months and would want to treat this aggressively. So the plan was, she diagnosed him with inflammatory myositis and said it wasn’t lupus or rheumatoid arthritis. She wanted to aggressive with it, so she wanted to put him on Rituximab and would hopefully get that going in the next couple of weeks, while they tapered his prednisone. He’s on a ton of other meds at this point.

August 5, 2026: he develops a very intense burning and tingling feeling in his arms - from fingers to a bit past the elbow. The PCP and rheum think it’s an allergic reaction so they send him Benadryl first and then Hydroxizine when the other one doesn’t help. He now gets these intense shocking flares (is what we’re calling it) up his arms, and then in the past 5 days it’s progressed to his upper torso, back, neck and his head right above the back of his neck, as well as ears and back of neck feel like there’s a pressure there and numbness.

August 14, 2026: went to the first outpatient neurology appointment and they were so concerned about this new arm stuff, coordination with his hands and numbness/tingling in the head and torso, that they wanted to do another urgent MRI to make sure nothing had spread for the transverse myelitis. We just got word that the MRI showed the exact same transverse myelitis inflammation as it didn’t in July, same location, nothing new which is good, but they’re now puzzled as to what is triggering this new arm stuff and numbness/tingling, and a new balance issue. They did a brain MRI too but it came back negative. So, to a PET scan we go tomorrow and I’m freaking out. The doctor that told us about it just now had 0 bedside manner. But the neurologists and trying to find someone that can also de an EMG.
- His potassium is low and they’ve had him on potassium pills since we got here this 2nd time around.
- they’re also doing B12 shots because of how low his numbers have been, and that’s been since the 1st hospitalization in July.

If you read this, thank you! I know it’s long, but I figured with how complex all of these situations are, to give more information on it. Just wondering if anyone has been through a similar thing with their myositis and diagnosis.

Family and friends are telling me that I need to take him to the Mayo Clinic. I’m worried for him, but I’m holding out hope it’s nothing more intense and it’s the myositis just flaring up again. Just seems like no one at the hospital knows what myositis is and what to do here.

Thanks again 🩷

Just like the title says. I found out about aphantasia about 2 years ago, and occasionally dive into it a bit more to try to understand what my brain is doing and if this is what’s going on with me. It does look like there are different levels of aphantasia from what I’ve gathered in the subreddit and some videos, but wondering if I actually have aphantasia or I’m just really bad at visualizing like a few others have described in previous posts.

With my eyes open - I can daydream very vividly. I have a very active inner monologue all day long. I can visualize things when my eyes are open - the famous apple in every color and variation. I have a really good memory, where I can tell you what someone was wearing at a party 7 years ago, what the weather was like when we visited a site, an event pretty much in its entirety - like what we did, talked about, listened to, it all comes very visually to me. Oh, and everyone’s birthday - even if I’ve only met them a couple times and they randomly told me it once. I’m particularly really good at dates and numbers. I’ll memorize a phone number, credit card number, address - anything with a number with just 1 pass through. It’s like if I can see the numbers on a sheet of paper when I have to recall them.

With my eyes closed - nothing visual, just the void. I can still remember things with my eyes closed, but not with pictures and visuals like I can with my eyes open. When my eyes are closed, I remember feelings, smells, audio, but it’s a lot harder for me to remember than if my eyes were open. It really is like everyone else explains it, just nothingness.

This has all made it super fun for therapy. I’m trying out some meditation for aphantasia and it’s been a lot better for me, but just wondering if anyone else has this type of experience on here.

I tried to talk about this with my maternal family and they didn’t get it. I’ve shared videos and exercises, and they look at me like I’m odd. My dad passed and pretty much everyone on my paternal side has also passed, but I wonder if he would’ve gotten it.