u/blueagave6

I am going through it with my jaw. I had TMJ severely as a teen, but for the past 10 years it basically disappeared. Earlier this week I started feeling nerve pain running along bottom right jaw and chin. Each morning I’ve woken up feeling normal but as day goes on it begins to swell and the nerve pain is severe. Last night, the side of my neck even felt full and could barely turn to the right. I was certain it was an infected wisdom tooth so I made an emergent visit with oral surgeon who saw no infection and stated it was likely TMJ causing nerve pain.

Has anyone else dealt with this? When TMJ was active for me previously, it mainly caused a lot of restriction on opening my jaw. I never had the swollen jaw and neck. I have slept 2-3 hours a night because of this the past week.

Hello! I am diagnosed with CAPs- VUS, I was diagnosed by my genetic doctor and rheumatologist. I saw my rheumatologist for a few years prior and she offered to refer me to NIH at anytime and I forgot to ask for this before she moved states two months ago. I just got in with a new rheumatologist who didn’t give me the greatest impression- I asked about referral to NIH and was told I can self refer. Does anyone know this process and which specific clinic to reach out to? TIA :)

Today between 3:15-5:30pm my car was stolen from my driveway, near Clark college. I am completely in shock as I was home working remotely in my office with key fob next to me. I’m a little shaken up because I am supposed to move across country very soon (driving because I’ve got my dog) but hoping there’s a resolution by then.

For others who’ve had their cars stolen in the city- was your car recovered quickly after reporting? I have full coverage with progressive as I have loan on vehicle- how long did insurance investigations take before getting pay out of car isn’t recovered? I am sure these answers can majorly vary but very curious of others experiences as it’s my first time, lol :( TIA

27F- My genetic test came back with NLRP3 mutation listed as de novo and VUS, however, I was diagnosed pretty quickly due to a long list of systemic symptoms. They diagnosed MWS on paper but think I’m somewhere in middle of spectrum of that and NOMID.

Does anyone with CAPs suffer severe GI and/or neurologic symptoms? I have ended up in ER several times for AMS and meningitis like symptoms (severe stiffness in upper thoracic and neck area) that accompanies excruciating head pain. I also have chiari malformation which is unrelated but i’m pretty used to head pain, this is just incredibly severe. These episodes were extremely scary and were unexplained until seeing genetic doctor who believes it’s related to the CAPs.

I grew up very healthy but developed mono and strep at same time around 20 years old, and suffered severe pharmaceutical injury from antibiotic. Since then I’ve been mildy symptomatic, but it became very severe after having baby two years ago. I experienced transient but unexplained cardiac damage postpartum, which they also recently have chalked up to CAPs.

I’d love to hear others experiences because it has been a struggle to find, but just started kineret a few weeks ago and feeling optimistic! It has been a frightening couple of years

I just began Kineret 100mg two weeks ago for CAPs. The past two days I’ve had a weird life-sucking weakness after injection, I inject around 5am. My limbs and chest get super heavy, when I tried to lay down for a nap I had a dream my house had a carbon monoxide leak causing weakness and another that I was paralyzed in dream and woke up feeling unbelievably heavy and slightly low ish blood pressure (90/63) . Has anyone had a similar experience in early days of injection?

I make sure to drink electrolytes and I also felt some significant improvement in pain and gut motility so I really hope this is not a super abnormal or lasting response

I (27F) am awaiting Chiari decompression, 9mm herniation. I’ve had to work a very competitive remote job and finally gained adequate health insurance this month. My symptoms became severe 2 years ago after having baby- so it’s been a long time coming

A couple weeks ago, after dealing with back to back viral illness, I was bending over to pick something up when I suddenly felt like my head was sliding off my neck. It caused some big autonomic reactions and I went to ER with clear CTA. since this episode, my neck just feels so unstable and it’s really scaring me. All of my surgeons are across country and I don’t even feel safe to travel in this state right now- I am so desperate I’m considering NUCCA to see if it’s possible my atlas rotated or something

Is this completely unsafe? Has anyone had success that has comorbid possible cervical issues?