It's been 13 months since my craniocervical fusion surgery and 7 months since my tethered cord surgery. My diagnoses were craniocervical instability, tethered cord, ME/CFS, MCAS, POTS, and mold illness (which may or may be fully explained by MCAS). 1/n

Before my first surgery, I couldn't sleep inside a house b/c of mold illness/MCAS. I got paralyzed, unable to speak, and barely able to breathe, sometimes 8 or more times a day. This could result from tilting my head back, speaking too much, a loud sound, a tap on the head. 2/n
Traction (pulling my head away from my body) brought me back from these episodes. I couldn't ever be left alone. I wasn't bedbound, but I could do essentially nothing for myself. 3/n
By that point, my symptoms were extreme even for CCI, and they were quite unusual for ME/CFS. But I started out with classic ME/CFS -- PEM, POTS, unrefreshing sleep, cognitive impairment, low NK-cell function, wacky cytokines, sky-high IGGs for a bunch of viruses. 4/n
The last year has been HARD. These surgeries are brutal and hard to recover from. Needing a second surgery when I hadn't yet fully recovered from the first was emotionally and physically rough. 5/n
But... Yesterday, I went for a three-mile hike with a friend. I was tired afterward, but no PEM. I can do strengthening exercises and push myself, hard. I'm starting to be able to write again. I can talk to people for as long as I like. I can care for myself and my new puppy. 6/n
My POTS is now under control with a fairly low dose of Mestinon. It's surprising that the POTS is still there, and it may be that I was getting tiny CSF leaks that self-healed. I'm hoping that I won't need the Mestinon after a while. 7/n
My mold reactivity is SO MUCH BETTER. I still have MCAS and I'm taking MCAS tx. But I can now live in my own house, which hasn't been possible for the last four years. I spent many months essentially homeless. I'm inexpressibly thrilled to be in the house I so love. 8/n
For me. I think the mold/MCAS was the primary driver of my illness. I believe that mold exposures led to inflammation, particularly around my brainstem. This inflammation involved the release of cytokines that are known to damage collagen. This damaged my neck ligaments. 9/n
That led to craniocervical instability. My neck ligaments *may* have gotten damaged initially from a couple of bad concussions I had as a kid -- not enough to cause sx, but enough to decrease the space for my brainstem and make me less tolerant of inflammation in that area. 10/n
I no longer meet the criteria for ME. 11/n
I don't believe that surgery is the solution to ME. Only a subset of ME patients have the same problems I have, and unless you do, and unless your sx are quite bad, you wouldn't be a candidate for surgery anyway. No neurosurgeon would operate on you. 12/n
I do think my experience, and that of other pts like me, suggests that we should be looking hard at the role of MCAS in ME, and also at what's going on with ME pts' connective tissue. Many ME patients have EDS, but I don't, and connective tissue was still my problem. 13/n
I also think we really need to look at the role of mold in ME. My MCAS sx were nearly exclusively in response to mold exposure, and before I developed CCI, I recovered almost completely through extreme mold avoidance. Mold plays a key role for many many ME pts. 14/n
I think one of the key lessons we're learning from ME is that these contested illnesses are closely related to one another. ME, EDS, IBS, Lyme, autoimmune disease, CCI, MCAS -- they're all pieces of a bigger story. 15/n
And long Covid is part of that story too. 16/n
So I think we need to break down the silos between these communities, ones that divide patients from one another and researchers from one another. 17/n
I don't have EDS, but EDS research is relevant to me. EDS patients are my brothers and sisters. 18/n
Doctors and researchers who want to help pts with one of these diagnoses need to learn about the rest too. 19/n
This is a project of co-liberation. Solidarity, friends. Let's work together. /fin

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Public Health Scholarships

This may help for those considering MS/PhD in Public Health

1. The Erasmus Mundus Joint Master Degree in Public Health in Disasters
https://t.co/1Z5qpstsSu

2. Afya Bora Global Health

3. Carl Duisberg Scholarships

https://t.co/HnNXdbWBxy

4. Commonwealth Scholarships for Developing Countries

https://t.co/3fWGf5b2OH

5. Fellowships in Public Health & Tropical

6. Fellowships to Promote Mental Health Journalism

https://t.co/MVV9PFsBJ1

7. 2021-22 Jeroen Ensink Memorial Fund

8. Paul S. Lietman Global Travel Grant for Residents & Fellows

https://t.co/qK76R495QT

9. Global Health Internships and Funding

https://t.co/FD9Gh2wXvO

10. Kofi Annan Global Health Leadership

11. MA in European Public Health

https://t.co/5x0Vr7b1j8

12. MSc in Public Health Scholarships - Maastricht University,
Let's talk honestly about "informed consent."
Someone with decades of training gives someone with none advice usually packed into 1-3 mins. Huge amount is based on trust. Huge potential for bias built in. But also there is no obligation to provide real alternative options.


I am classified as 'gifted' (obnoxious and ableist term). I mention because of what I am about to say. You all know that I was an ambulatory wheelchair user previously - could stand - but contractures have ended that. When I pleaded for physio, turned down. But did you know...

I recently was chatting with a doctor I know and explaining what happened and the day the physiatrist told me it was too late and nothing could be done. The doctor asked if I'd like one of her friends/colleagues to give second opinion. I said yes please! So...

She said can you send me MRI and other imaging they did to determine it wasn't possible to address your contractures.

Me: What?
Dr.: They did a MRI first before deciding right?
Me: No
Dr: What did they do??!
Me: Examined me for 2 minutes.
Dr: I am very angry rn. Can't talk.

My point is you don't even know if you are making "informed" decisions because the only source of information you have is the person who has already decided what they think you should do. And may I remind you of a word called 'compliance.'

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THE MEANING, SIGNIFICANCE AND HISTORY OF SWASTIK

The Swastik is a geometrical figure and an ancient religious icon. Swastik has been Sanatan Dharma’s symbol of auspiciousness – mangalya since time immemorial.


The name swastika comes from Sanskrit (Devanagari: स्वस्तिक, pronounced: swastik) &denotes “conducive to wellbeing or auspicious”.
The word Swastik has a definite etymological origin in Sanskrit. It is derived from the roots su – meaning “well or auspicious” & as meaning “being”.


"सु अस्ति येन तत स्वस्तिकं"
Swastik is de symbol through which everything auspicios occurs

Scholars believe word’s origin in Vedas,known as Swasti mantra;

"🕉स्वस्ति ना इन्द्रो वृधश्रवाहा
स्वस्ति ना पूषा विश्ववेदाहा
स्वस्तिनास्तरक्ष्यो अरिश्तनेमिही
स्वस्तिनो बृहस्पतिर्दधातु"


It translates to," O famed Indra, redeem us. O Pusha, the beholder of all knowledge, redeem us. Redeem us O Garudji, of limitless speed and O Bruhaspati, redeem us".

SWASTIK’s COSMIC ORIGIN

The Swastika represents the living creation in the whole Cosmos.


Hindu astronomers divide the ecliptic circle of cosmos in 27 divisions called
https://t.co/sLeuV1R2eQ this manner a cross forms in 4 directions in the celestial sky. At centre of this cross is Dhruva(Polestar). In a line from Dhruva, the stars known as Saptarishi can be observed.