Jen Brea: My ME is in remission

Yes, it's a common experience for me, too.

 

Common !?!?!?!?
I wonder is it common for doctors to say something is impossible instead of "i don't know"

 

In my experience this happened often. But I might pick the "interesting" ones.

 

Indeed, though if we build up a good evidence base and it turns out this is the disease mechanism of ME then it works in our favor.
Also if its something thats misdiagnosed as ME then the patients who benefit will need to be able to be separated out and treated which would change their lives for the better.

I seem to have the same "interesting" luck

 

I brought this up with my GP a few months ago.


I did this because of 2 things
1) I developed a new symptom last summer- a severe worsening of symptoms such that I had to lie absolutely flat for two weeks after a car journey down to Cornwall which I had been doing each summer for 35 years sharing the driving - I was very dizzy, nauseous for the first several days of the lying flat such that I felt alarmed

and 2) that I had a diagnosis of hypermobility and an NHS Prof suggested that my conditions ( I have others) could come under an overarching umbrella, perhaps EDS, and referred me ( unasked) to a geneticist. CCI seems to be linked according to some accounts with EDS although @JenB made it clear that she is not hypermobile.

Just to say for now that my GP had been approached by another patient with a similar query and was not hostile. He knew the three neuro surgeons worldwide who do this surgery. This was surely unusual. It sounded as if someone had been reading the same info as me.

Note: I am not wishing to seek or be tested for surgery myself but now use a Philadelphia collar for travelling and will be flying to Cornwall this summer. Flying doesn’t provoke the same problems.

 

Wonderful that Jen has managed to get her life back.

Can't help wondering whether she had a blood transfusion as part of any of her surgeries?

 

Great news for Jen.
It's a pity she didn't have Ron Davis' blood/serum test/s both earlier on and now for comparison.

 

Or antibiotics. Part of my pondering on my improvement is whether it's down to the course of antibiotics that I had - I'd never had any antibiotics at all prior to my recent gallbladder issues.

 

That's a lovely hopeful response..
Well said!

 

Anesthetic

 

Or saline?

 

I was wondering if prolonged anaesthesia could be beneficial? Very out of the box. Look at the marked contrast in response to the menopause.

 

Reminds me of the hibernation therapy thats been tried for depression and a few other diseases, didn't work so well unfortunately

 

How will this news affect the use of 'Unrest' ?

 

I think, for the sake of honesty, it would have to alter how it is used.

 

I would have thought that anaesthetics are more likely to trash vitamin B12 and make things worse. The nitrous oxide used in many anaesthetics destroys/oxidises the B12 in the body and makes it useless.

https://www.b12-vitamin.com/anesthesia/

 

Since folks are bringing up Unrest, all I can say is that when I viewed it, I found it to present the most accurate picture of Me that I have ever seen: the collapsing for no reason, the twitching, the sickness, the weakness, etc.

As I said earlier, and as Doka pointed out, it looks like these spinal issues have been pointed out earlier by ME doctors.

I wish Jen all the very best in her new life, unleashed from the prison of the bedroom. Best wishes.