u/dcg446

The past month or so I’ve been running a low fever (99-100…when my normal is in the low 97s) for a few hours at a time a few times per week. Oddly, I’m no longer having night sweats right now.
I know it’s just another symptom on the long list of stuff caused my the inflammatory process, but does anyone else experience this? Not quite sure if I should take Tylenol or Advil to feel less crummy when it happens. I’ll be sure to check in with my MPN specialist about it at my next appt in August.

And he showed up one day early for his cognitive testing appointment and then was 15 minutes late on the correct day because he couldn’t find his phone and ended up leaving without it.

He doesn’t have a diagnosis yet, but it’s been a long and exhausting 4 years to even get to this point and after ruling out basically everything else with neurology, neuroimmunology, and rheumatology, decline continues and cognitive testing was just completed. We’ll have the results in a few weeks.

I literally thought my husband had just become an ass until the Neuro brought up cognitive testing and I started googling. The symptom list for frontotemporal dementia had my jaw on the floor.

It started with just not keeping up with things he usually did. Bills, the taxes, the stuff around the house that he normally handled. And increased anxiety. He started with a psychiatrist who prescribed adhd meds and anxiety meds, but within a year he was on the maximum dose of two adhd medications and it was doing nothing to increase focus or attention.

Next came a host of things, but not necessarily all at once. He used to be an easygoing jokester, but is now super sensitive to everything because he always thinks everyone is judging or making fun of him. He used to be fully comfortable around people he knew but more reserved around total strangers, but he’s now talking to everyone everywhere about everything (and can’t read when they don’t want to listen or are done and want to go). He started using weird words and phrases that he’s never used before, and using weird combinations of words to make up for words he can’t think of. He started driving odd round-about ways to places we’ve driven the same route to for 20+ years and claiming that he always goes that way. He won’t throw mail away. Even junk. And I’m forbidden to touch anything with his name on it. He’s morphed into a different person. One that is selfish and rude and obnoxious and impulsive and just belligerently incorrect all the time.

He became oddly obsessed with one of our son’s friends (young adult, thank goodness) and constantly contacted him to the point that he was finding new ways around being blocked and couldn’t understand why this person “hated him and thought bad things about him” and felt he needed to contact them so he could understand and prove that he’s a good person.

He’s basically decided that I’m the enemy and gets mad if I talk to our kids without him because he’s sure that i must be talking bad about him to them. Everything that happens is my fault, even if I wasn’t there, didn’t know about it, whatever, I somehow manage to orchestrate all misfortune.

He’s down to being willing to eat only about 4 different meals and 3 snacks and literally forgets to eat sometimes all day long. Long term memory seems fine, short term is kinda chaotic. He thinks he remembers, but it’s usually mixed up with other things and only about 50% or less correct. Like he’ll remember that we went somewhere but the place is wrong. He says work is going fine, but I’m not sure that’s how work would put it. I just don’t know. He works from home and I work out of the house all day and come home to chaos.

About 2 years ago he started having trouble with neuropathy in his hands and feet and he’s now falling a few times a week. I don’t know if this is related or unrelated but they haven’t found a cause for the neuropathy. I don’t know if this will end up being related or just something that happened to co-occur.

Does this sound familiar to anyone?
Is there any hope or am I just going to spend the rest of my life hiding in my own house so I don’t have to deal with the chaos?

I went from Enbrel to hyrimoz to simponi aria. I had my second infusion exactly one week ago and I’m feeling like I did before I ever started meds at all. My knuckles are swollen for the first time in almost a year, my back is a mess, and it’s taking me forever to get up and out the door in the morning because everything hurts and I’m stiff.
I know if I call my doc he’ll tell me to give it time and give me a medrol pack to tide me over but that’ll just give me killer headaches and insomnia in exchange for 3-4 days of less pain.
He said it can take a while to kick in, but what time frame are we looking at?
He switched me off the hyrimoz to this to try to get a little more improvement in my back and SI joints but I was so much better on hyrimoz than I’m feeling right now.

2025 core- bought new in Feb 2026

Today CarPlay just won’t connect at all. I’ve tried two cables. I’ve tried a wireless adapter. Ive deleted the wireless adapter and the Volvo out of my phone and reconnected. I’ve tried restarting my phone and the car multiple times.

The port charges my phone just fine, but the screen says to connect my phone for CarPlay.

I’m guessing I might need to restart the infotainment system. What’s the easiest way to do that?
Any other suggestions?

For about 4 months I’ve been dealing with a super annoying and slightly overdramatic thumb and forefinger twitch that only occurs at rest and keeps me from sleeping well. It was recently diagnosed by my neuro as a benign fasciculation in my hand. I had some prolonged latency on my motor neuron testing but my emg was normal.

I also have axial psoriatic arthritis and recently started on an infusion TNF inhibitor and did a short prednisone taper. Two days after my first infusion and the same day I started the prednisone, the twitch stopped cold turkey and has been completely absent for almost three weeks now.

Has anyone else experienced this?
It will be interesting to see if it returns when I approach time for the next infusion.

A little over 2 years ago my husband (50) started with widespread pins/needles in his hands and arms that progressed to whole body in a few weeks and now it’s been 2 years of neuropathy/numbness/altered sensation basically everywhere. Now has intense fatigue, body aches, some balance issues and falling, some gut irregularities and sometimes trouble swallowing.

He was tested for everything by Neuro, clean MRIs of spine and brain, clean EMG and NCS except for some known ulnar issues, sent to rheum for a full battery that was also clean. Nerve fiber biopsy showed some damage on thighs. Specialty labs sent to Cleveland clinic for nerve issues also normal. He was tested for Lyme twice (no known tick exposure and we live in an urban area) and also tested for diabetes with a full GTT. He’s been treated as ideo neuropathy since and has been on lyrica, cymbalta, and prednisone for the duration. The big mystery has always been that when they try to reduce the prednisone he gets significantly worse. So they added cellcept about 6 months ago to see if that will help them eventually reduce the prednisone.

He was recently sent to a spine doc to investigate back pain and this spine doc insisted on another rheum eval and sent him to a different rheum. This time the initial labs came back with the following noted:
ANA positive
Speckled pattern 1:160
Anti-Cardiolipin Ab, IgM High
C3 Complement High

From the CBC/CMP:
lymphocytes absolute -low
bun/creatinine ratio -high
potassium- high
albumin-high

from Lyme testing
IgG negative
IgM positive

In light of these new results, Neuro wants a spinal tap and said that rheum probably will too. They also said that the IgM positive Lyme might be a false positive since IgM usually indicates newer exposure. Rheum appt isn’t for a few weeks.

We know that Lupus is on the differential. Can it present with primarily such dramatic Neuro symptoms? Is there anything else that can cause symptoms like this and a positive ANA?

I had my first Simponi aria infusion on Monday. The rest of that day was fine. But I’ve had a headache now for 3 days. It’s not debilitating (I get migraines so I’m not a stranger to bad head pain), but it’s annoying and it makes working and doing everything harder than it should be. I stayed home today to see if I could sleep it off, but I’m a teacher and I really need to go back tomorrow. Advil and Tylenol help for a while but it comes right back.

Has anyone else experienced headaches with Simponi aria? Did they resolve?