u/Purple-Trex-8541

Hi!

I have just received the results of the ultrasound of my salivary glands “Mild nonspecific bilateral salivary gland parenchymal inhomogeneity”. Should it also include any kind of score which would indicate the degree of this inhomogeneity?

I am on the fence about this, as I do not have positive Sjogren’s specific antibodies. I am going to have a lip biopsy nevertheless, but am slightly scared that they miss it.

How have you been doing guys?

I never got better over the course of the illness. Only steady decline to very severe ME/CSF. I am still trying to push for investigations of autoimmunity in my case (small fibre neuropathy, possible autoimmune ganglionopathy and all that stuff).

Hi everyone!

I have a small glimmer of hope that I may actually be getting better after very severe ME/CFS, and I’m trying not to get ahead of myself, but it’s hard not to feel emotional about it.

I know one of the hardest parts will be figuring out how to re-enter society and reconnect with people face to face after so long. I feel hopeful about that, but I also feel deeply hurt and bitter about how some so called friends ghosted me along the way. It left me feeling ostracized from society, and I don’t really know how to process that.

For those of you who have improved or recovered: how did you handle the emotional side of reintegration? How did you deal with grief, resentment, loneliness, or feeling left behind?

What dosage are you on (oral or IV)? Does ketamine exacerbate your POTS/dysautonomia?

I have been having very severe (ME CFS like) long COVID for the last 2-3 years (I am bedridden), and not only I stopped sweating completely, but I also noticed hair loss on my arms and legs.

Has that improved for anyone?

Hey!
I originally come from a different country but was wondering if anyone is aware of a good dysautonomia specialist in Turkey. I am looking for immunotherapy (privately) for small fibre/autonomic neuropathy.

Hey!
I originally come from a different country but was wondering if anyone has a good dysautonomia specialist in Turkey. I am looking for immunotherapy for small fibre/autonomic neuropathy.

Hey there!
I have been struggling with very slow gut motility due to dysautonomia caused by POTS/ME CFS like long COVID. I have realised recently that Pyridostigmine actually intensifies my allergic symptoms and this wired mental feeling and I have been thinking about quitting Pyridostigmine. However, even the mixture of Prucalopride, Movicol and Bisacodyl is not enough for my peristaltic system.

Has anyone noticed if their GI symptoms stabilised after quitting Pyridostigmine?

I am pretty sure my mum got long COVID (she’s in her early 60s). I have had ME for almost 6 years now (very severe) and couldn’t stop crying when I got her messages today (“I want to lie down all the time” and “My insomnia is insane”).

About every two weeks, I have these incredibly vivid, long and blissfully happy dreams that have zero connection to my real life. I wake up absolutely euphoric, like I’ve been pumped full of endorphins.

In reality, though, I’m very severe, bedridden and, therefore, I’m emotionally flat and numb from the physical toll. It’s kinda weird that my brain conjures these escapes. Is this its way of coping with harsh reality?