u/AnnualMacaron335

To start: I have messaged my infusion clinic/doctors office and have also left a voicemail however they unfortunately use an AI bot to answer the phones and you can only leave a message now 🫠

I had a bit of neck strain and headache last weekend. I got a massage and it helped for two days. During my infusion Wednesday I became very dizzy and the nurse said she thought it was because I took Benadryl which didn’t make sense to me. I had to have a family member come drive me home.

Since then I’ve had increasing neck pain and stiffness, pain at the base of my skull, and a headache that feels like my head is having contractions, eye pain, and spinal pain. When I bend over or stand up It feels like blood or fluid is rushing up my neck and pooling into my head and it’s very painful.

I can still touch my chin to my chest, and the headache got a just smidge better after taking 800mg of ibuprofen, sumatriptan, and my muscle relaxer. So I am wondering if this is just normal or if there is something else wrong.

I was diagnosed with limited last fall, have issues with Raynard’s, calcinosis, and have been battling GI issues for a decade now. I’m currently on Octagam IVIG for Myastenia Gravis, but my GI doesn’t know what to do for me. He has me taking omeprazole x2 a day (insurance will no longer pay for Dexilant which is the only thing that’s ever helped), carafate, and I take Pepcid on top of it. Anything bland I eat flares it up.
I guess I’m just lost on what to do, and my rheumatologist isn’t great help, and I’ve tried to switch but with the overwhelm most clinics won’t take patients who are established elsewhere.
My centromere B showed in 2020, but the rest of the symptoms developed over the last few years.

Has anyone ever had an LS flare up because of a catheter (from surgery)? This is the second time I’ve had this happen upon waking from surgery, and the nurses were frustrated that I was complaining about it burning so badly.
I tried to ask in the Facebook group, however admin deleted my post stating it was off topic to LS 🫠 either an AI filter or the admins are being jerks today because now I can’t go back and read the helpful tips other users left me.

Is it possible to have hypermobility and be misdiagnosed? I saw a hEDS specialist at UTSW a few years back because my pcp and physical therapist said that I show signs of hypermobility. The specialist said that I have a few joints that are hypermobil but that I don’t have a hypermobility disorder. I ended up being diagnosed with Myasthenia Gravis (MG) last year, and waiting for a muscle biopsy for Myositis this month.
I constantly have upper thoracic pain, especially in my left shoulder and snakes around to my ribs (a pain I often see talked about in the hypermobility forums). This pain has been going on and off for over five years. Is there still a possibility that hypermobility or is it possible it’s just MG?