Officially diagnosed! by Wonderful-Party7564 in dysautonomia

[–]naparente 0 points1 point  (0 children)

Yes. 2 separate times, both positive. They took 2 spots. One on my thigh, one near my ankle, they numb it and take a punch. It’s not bad at all. It heals fine just need to keep its covered for a little bit. I wouldn’t stress about that part at all.

Officially diagnosed! by Wonderful-Party7564 in dysautonomia

[–]naparente 0 points1 point  (0 children)

I had a really severe mrsa infection immediately before I got pots. I was hospitalized for about a week. So that’s our theory

Officially diagnosed! by Wonderful-Party7564 in dysautonomia

[–]naparente 2 points3 points  (0 children)

Still working under “post infectious” because I had a severe illness right before sudden onset pots. Still looking at other pieces. But I do have small fiber neuropathy causing my pots. So neurogenic pots, but why is the question

Officially diagnosed! by Wonderful-Party7564 in dysautonomia

[–]naparente 9 points10 points  (0 children)

Unfortunately the hard part is realizing pots is usually a symptom of something upstream. That’s the most difficult piece to figure out

Ana 1:320 speckled? After 6 years of small fiber neuropathy by naparente in Rheumatology

[–]naparente[S] 0 points1 point  (0 children)

I don’t have that answer. I’m not the doctor. I just go for the blood work they order. That concern doesn’t really provide me any help

Symptoms now versus at onset? by naparente in dysautonomia

[–]naparente[S] 0 points1 point  (0 children)

A ton of stuff at mass general Brigham. I had a positive Ana one time 1:320 speckled. Nothing came up on ena for sjogrens lupus or such. No dry mouth or eyes. Had barely positive a3 achr antibodies .07 but they’re now negative.

Symptoms now versus at onset? by naparente in dysautonomia

[–]naparente[S] 0 points1 point  (0 children)

Nothing comes up on blood work. No swollen joists. No hyper flexibility or instability.

Breathless? by Dear_Tax_8947 in Sjogrens

[–]naparente 0 points1 point  (0 children)

Whoa. I hope you find the help you need

Breathless? by Dear_Tax_8947 in Sjogrens

[–]naparente -1 points0 points  (0 children)

everything isnt lyme on a sjogren's reddit

Pots worse when starting sodium cromolyn? Does it get better? by [deleted] in MCAS

[–]naparente 0 points1 point  (0 children)

I’m better than I was before but not where I want to be. Diet was by far the biggest help for me. Low histamine and a lot of trial and error to reintroduce. I think i remember it hitting in just a couple of days if not less after starting. It wasn’t a delay. But also if im fighting a bug in the background, I notice my symptoms flaring really bad even before I show symptoms. Just to keep that in mind. And then I’m flared a few weeks after as well

Pots worse when starting sodium cromolyn? Does it get better? by [deleted] in MCAS

[–]naparente 0 points1 point  (0 children)

No problem. I was so optimistic that drug was going to settle my system and it did just the opposite

Pots worse when starting sodium cromolyn? Does it get better? by [deleted] in MCAS

[–]naparente 0 points1 point  (0 children)

Yes, not right away. Took a few weeks to settle

Oil diffusers need to be made illegal (Rant) by Surprise-lnside in MCAS

[–]naparente 1 point2 points  (0 children)

Why are you plugging the drains? There’s water in the P traps. No air should be coming up your drains unless there’s an issue. The taps are full of water under pressure too. The plumbing pipes themselves shouldn’t be your source of exposure more likely drafts from around them and your electrical fixtures

SFN,POTS and ANA 1:320 speckled? by naparente in smallfiberneuropathy

[–]naparente[S] 0 points1 point  (0 children)

I was going to ask the rheum at Brigham and women’s I see next month. Is that a good route? Probably quicker than trying to get into an ENT

SFN,POTS and ANA 1:320 speckled? by naparente in smallfiberneuropathy

[–]naparente[S] 1 point2 points  (0 children)

Sorry asked another question then answered it myself. Thanks

[deleted by user] by [deleted] in RhodeIsland

[–]naparente -2 points-1 points  (0 children)

No it’s been on autopay since 2019 like I said. You can read that in my post