Anyone seen these doctors and can share if they have an understanding of dysautonomia? Southern California Neuromuscular/dysautonomia specialist recommendations or avoids? I'm actually testing positive for a couple of anybodies (anti-vgcc and anti ganglionic a3 ACHR), but I've not found a doctor familiar enough to help treat. Thanks.
Hi, can anyone recommend a surgeon for a biopsy on my quad muscle? Or type of surgeon? Rheum is saying any general surgeon is fine, when I call they suggest neuro or neuromuscular specialist. Unfortunately, most are out of network near me (southern california). Mostly I want to ensure I am getting the correct biopsy type from someone familiar with muscle biopsies. Thanks for any help!
Hi, can anyone recommend a surgeon for a biopsy on my quad muscle? Rheum is saying any general surgeon is fine, when I call they suggest neuro or neuromuscular specialist. Unfortunately, most are out of network near me (southern california). Thanks for any help!
Edit: Rhuem suspects myositis, but myositis antibodies negative, EMG and RNS negative, I am testing positive for other neuro & rheum antibodies (anti-vgcc, anti-ganglionic achr, anti-PR3 / c-ANCA)
Hi, can anyone recommend a surgeon for a biopsy on my quad muscle? Rheum is saying any general surgeon is fine, when I call they suggest neuro or neuromuscular specialist. Unfortunately, most are out of network near me (southern california). Thanks for any help!
Edit: Rhuem suspects myositis, but myositis antibodies negative, EMG and RNS negative, I am testing positive for other neuro & rheum antibodies (anti-vgcc, anti-ganglionic achr, anti-PR3 / c-ANCA)
How is everyone doing in the months following hysterectomy recovery? Are most back to normal after 6 to 8 weeks? Chores? DIY remodeling around the house? Playing sports? Yard work? Lifting heavy at the gym? Are you doing most things you were doing before by 8 weeks, or is the heavy lifting/bending/twisting restriction longer? Early 40s, it would be a robotic, ovarian sparing hysterectomy. Thanks
Uterus angry since starting Loestrin birth control 2.5 weeks ago. Recently diagnosed Adenomyosis, birth control to stop the heavy bleeding. Didn't stop period, but it was less bleeding. Problem is cramping and nausea and PMS since the first pill, cramps are not as bad as typical period, but 5/10 or 6/10 pain level fairly consistently, round the clock. Trying to make it a month or two until surgery without needing iron or blood transfusions, but it doesn't seem helpful so far. Now I can hardly function all of the time. Any idea what's going on? Is this normal?
Biopsy done ✅
Uncomfortable, but similar to cramps for just 2 minutes
Ask for the lidocaine cervical block, I'm sure that helped me be surprised it was less awful than some here have experienced
Delayed hysterectomy by a few years? Or just pain until hysterectomy?
Recently diagnosed Adenomyosis. 25 years of symptoms. I have some other medical conditions that make general anesthesia difficult, and possibly anesthesia will refuse, so wondering if anyone was able to successfully delay or avoid hysterectomy. Mid 40s, so hysterectomy would otherwise be the best option. I've seen all the horror stories, but it looks like ~50% success rate, which I'd be open to if it is actually something that could work for a few years. Diffuse adenomyosis, uterus 2x normal size, no fibroids or reason to suspect endo. Decades of horrible pain and excessive bleeding. Trying the BC pills again, but doubtful I'll be able to tolerate them long term.
Recently diagnosed. 25 years of symptoms. I have some other medical conditions that make general anesthesia difficult, and possibly anesthesia will refuse, so wondering if anyone was able to successfully delay or avoid hysterectomy. Mid 40s, so hysterectomy would otherwise be the best option. I've seen all the horror stories, but it looks like ~50% success rate, which I'd be open to if it is actually something that could work for a few years. Diffuse adenomyosis, uterus 2x normal size, no fibroids or reason to suspect endo. Decades of horrible pain and excessive bleeding. Trying the BC pills again, but doubtful I'll be able to tolerate them long term.