Hi, New Here!

[JacintaM]

Hi, I'm Jacinta, and I've been lurking on this forum for about a year, and I finally got an account a month or so ago.

My symptoms showed up plainly about two years ago. I had two stomach viruses right after each other, and from then on i had a gradual increase in fatigue and orthostatic intolerance. I was diagnosed with IST, POTS and dysautonomia last year and I've tried florinef and Ivabradine, but both made me feel worse.

I've also had stomach problems since i was a baby, and I was diagnosed with reflux when i was 11. I also seem to have a lot of food intolerances but they seem pretty inconsistent. I also have a fair amount of nausea.

On the tilt table test, my pulse jumped from 124 bpm to 154 bpm, so that showed the IST and POTS.

Um, another major symptom is brain fog, which i'm encountering right now

My mum does a lot of research, and found a doctor in Canada who does a CT spect scan and intercranial doppler to rule out some problems in CFS patients, so she got my gp to order them. The intercranial doppler showed that the arteries going up into the brain were clear and flowing well. But the spect, which checks the perfusion in the brain, was "grossly abnormal" which is never a nice result to get. It said there is markedly reduced perfusion in frontal lobes, parietal lobes and anterior aspects of the occipital lobes. Mum (who is a retired doctor) thought that the reduced perfusion in the frontal lobes might account for my brain fog.

I don't know any more regarding that as of yet. I'm getting a muscle biopsy at some point at the near future, to check how the metabolic stuff is going there, because that might explain if the reduced perfusion is bad blood flow in the tiny blood vessels or if the cells just aren't picking stuff up from the blood. Or it could be both.

But the metabolic aspect could link in a possible metabolic acidosis that i had when i was 1, when i had two fits.

I think that sums up most of my issues, sorry if it's a bit long!

So does anyone else have anything kind of similar going on?

Thanks,

Jacinta

[gjensen]

Welcome Jacinta. I know enough to be misleading, so I will refrain. I do think the tests that you have had done are very interesting.

[Katybug]

Hi there! Welcome to the forum. Are they doing the muscle biopsy to check only for metabolic issues or are they doing a small fiber nerve check as well? I ask because some people here have found small fiber neuropathy upon biopsy which is one known cause of dysautonomia. I think a lot of us experience brain fog as well. Cerebral perfusion is also common among us. I wear compression stockings when I'm feeling like all my blood is in my legs instead of my brain.

[Chaos]

If my brain fog is letting me remember right I think a lot of ME/CFS patients are found to have metabolic issues and I think they tend to be more acidic frequently. I think that goes along with their tendency to have lower anaerobic thresholds which causes them to produce more lactate as a result of increased anaerobic metabolism. I know Julia Newton's group in England has released some really interesting studies linking a lot of these things together, including some of the autonomic issues we have.

[corina]

Hi Jacinta, welcome to the forum!

[BeforeTheMorning]

Hi Jacinta,

Welcome to the forum! I probably have POTS too, well that is, all my tests have shown POTS I just haven't received my official diagnosis yet. I really hope that you'll be able to find a medication or something that will help you soon.

Best Wishes,

Lyla

[looneymom]

Hi and welcome to the forum. Sounds like you and your mom are on the right track. Hope you find something that will help you soon.

Rachel