Discover and read the best of Twitter Threads about #tetheredcord
Most recents (4)
It's still early, but I wanted to share some initial indications of a significant breakthrough in the treatment of my daughter's #hEDS & #MECFS. I attribute progress to Calcium D-Glucarate, a supplement known for improving phase 2 detox of estrogen & other steroid hormones. 1/
The usual caveats: I am a patient caregiver, and not an MD or a medical researcher. It is early. This is just one patient. This is a very complicated area. I am sharing not so much to encourage people to try the supplement but rather to encourage more research in this area. 2/
My daughter is part of the cohort of (mostly) women whose #hEDS took a severe turn for the worse around puberty, prompting #MECFS, #craniocervicalinstability, #POTS, #Chiari, #tetheredcord and other manifestations. This is important context. 3/
I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.
So here it goes… 🧵
For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug
What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
So here it goes… 🧵
For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug
What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.
I also was tested for collagen disorders which came back negative.
I also was tested for collagen disorders which came back negative.
Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).
A CT revealed I had jugular compression.
A CT revealed I had jugular compression.
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life
But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.
2 surgeries later... 🧵, 🎬 2
1/
But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.
2 surgeries later... 🧵, 🎬 2
1/
2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!
I was healthy & active 🚴🏄♂️ 🥁
2/
I was healthy & active 🚴🏄♂️ 🥁
2/
Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.
⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects
3/
⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects
3/
If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:
1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1
1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1
This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2
batemanhornecenter.org/wp-content/upl…
batemanhornecenter.org/wp-content/upl…
2) CARDIOLOGY to evaluate for POTS (Tilt Table Test) or NASA Lean Test can be done in office; at home test: an increase >30 bpm heart rate from supine to standing in adults may indicate POTS.
Treatment for POTS may improve some symptoms but need to find cardio aware of POTS. /3
Treatment for POTS may improve some symptoms but need to find cardio aware of POTS. /3
