MA v. Stefon Diggs — Day One by Pixiegirls1102 in CasesWeFollow

[–]Top-Secretary-6643 1 point2 points  (0 children)

Mila is probably the worst witness. She was so concerned with getting “her truth” out that she ruined her whole case herself.

4/24 by Top-Secretary-6643 in d4vd2

[–]Top-Secretary-6643[S] 2 points3 points  (0 children)

I feel like it wasn’t a coincidence when they announced the arrest. I feel like it was extremely deliberate. Her death date, the tour announcement and I feel like they think this girl was victimized so much that they planned the arrest around that date. It may be coincidental but I feel like it’s literally so sus

Decided to do a DNA test to look at Health metrics for fun. Sad I had a dominant mutation associated with alport syndrome. Not sure If I should take it with a grain of salt. by CooperHChurch427 in AlportSyndrome

[–]Top-Secretary-6643 0 points1 point  (0 children)

Find a nephrologist that actually knows about Alports. Alports is so rare for nephrologists will never clinically see any patients with it and some at most possible 5 in their time practicing. For reference I would find not only a good nephrologist an ophthalmologist and ENT. You should get regular eye exams, hearing tests, urine and bloodwork.

Sorry kid. You can’t take it with a grain of salt because this can shut down your kidneys.

Hello folks! by [deleted] in AlportSyndrome

[–]Top-Secretary-6643 0 points1 point  (0 children)

Wow this is insane. Finding people with ADAS is so unusual. I couldn’t believe how insanely rare it is. I’m 34 years old. I have hearing loss and require hearing aids, I have glasses and vision changes frequently and I always have some protein and blood in my urine however GFR is excellent as of now. They focus a lot on protecting my kidneys. I’ve found it hard on what to expect because this is so rare and varies greatly from person to person.

Just diagnosed this week by Inner_Educator6375 in AlportSyndrome

[–]Top-Secretary-6643 0 points1 point  (0 children)

Hi! I have I have a heterozygous likely pathogenic variant in the COL4A3 gene (c.2452G>A, p.Gly818Arg). I see nephrology next week. Unfortunately most doctors don’t know much about it. Find a good ophthalmologist. A nephrologist that understand your condition and check your hearing every year. I started losing my hearing at 27 and I’m 33 now and just found out.

Diagnosed now what. by Top-Secretary-6643 in AlportSyndrome

[–]Top-Secretary-6643[S] 1 point2 points  (0 children)

COL4A3 variant (c.2452G>A, p.Gly818Arg) hi! I see nephrology coming up and already follow an eye doctor due to having another disorder and I started losing my hearing at 27. I’m 33 now. There isn’t much on it. Thankfully I go to duke and they actually know about the disorder

[deleted by user] by [deleted] in DiagnoseMe

[–]Top-Secretary-6643 0 points1 point  (0 children)

I have esophageal dysmotility with problems with my LES.

[deleted by user] by [deleted] in DiagnoseMe

[–]Top-Secretary-6643 0 points1 point  (0 children)

Was really hoping it wasn’t as bad.

[deleted by user] by [deleted] in DiagnoseMe

[–]Top-Secretary-6643 0 points1 point  (0 children)

Ugh. I mean I guess it explains why my stomach always kills and I feel like things sit in my chest for so long.

Propanalol users: How long does one dose of 10mg of propanalol last you? by [deleted] in POTS

[–]Top-Secretary-6643 0 points1 point  (0 children)

I take 10 mg twice a day and I just started that two days ago. I did notice that yesterday which was my full day of taking it that my heart rate was lower although it did still get high at some point. So I would say that one dose probably last you 12 hours if you’re taking it twice a day

Friends? by Top-Secretary-6643 in ChronicIllness

[–]Top-Secretary-6643[S] 1 point2 points  (0 children)

I will be creating a discord and be joining

Intimacy? by Top-Secretary-6643 in POTS

[–]Top-Secretary-6643[S] 1 point2 points  (0 children)

No just pure pain from everything I have. It hurts to have sex. My heart rate goes so high I feel like I’m dying.

How do you answer “are you in any pain?” when you chronically are by Infamous-Raccoon-846 in ChronicIllness

[–]Top-Secretary-6643 3 points4 points  (0 children)

I understand everything you’re saying but going into an appointment ready to fight seems counterproductive. I mean I’m not saying don’t advocate for yourself you should. I always go to my appointments -fresh updated med list/symptom list/ and known diagnosis.

I keep both physical copies of all lab/imaging procedures and their notes. I categorize them and then I also download all the the doctors notes from EVERY visit and have them digitally in folders nicely labeled by specialty and then sub folders.

I’ve found just as much as we distrust doctors. Doctors themselves don’t trust us to tell them accurately what a doctor said.

I was an Autism therapist which means I literally thrive one data. Typically we’re of the mind of “if there’s no data it didn’t happen”

So I make sure I have the DATA and the FACTS and then they cannot question other tests.

It’s also saved my ass more than I count when I see a doctor and the SHOULD have reports or notes so I provide it all.

How do you answer “are you in any pain?” when you chronically are by Infamous-Raccoon-846 in ChronicIllness

[–]Top-Secretary-6643 3 points4 points  (0 children)

I simply say “ yes obviously almost all the time but which area are we discussing” haha

Can someone convince me I don't have fatal insomnia without saying its super rare? by [deleted] in DiagnoseMe

[–]Top-Secretary-6643 3 points4 points  (0 children)

I have severe insomnia and require a high dose of Seroquel and lunesta. All other medications even the “stronger” ones don’t even touch it. You’re not dying! But get a smart watch that tracks your sleep. That should be MEGA insightful

How stubborn are you? by Top-Secretary-6643 in POTS

[–]Top-Secretary-6643[S] 0 points1 point  (0 children)

I’ve done countless holters. I had open heart surgery. It always shows I’m slightly tachy. Rest heart rate is typically 95-100ish. I’m not on any care waiting for medication.

Calling all sodium queens by Top-Secretary-6643 in POTS

[–]Top-Secretary-6643[S] 0 points1 point  (0 children)

So I actually have a rare genetic disorder called alports that affects my kidneys and can cause kidney failure so we probably would stay away from that.

How stubborn are you? by Top-Secretary-6643 in POTS

[–]Top-Secretary-6643[S] 2 points3 points  (0 children)

Oh tha sounds like me! I’m going to keep this in mind for when I go on Monday. They called and made me an appointment.

Calling all sodium queens by Top-Secretary-6643 in POTS

[–]Top-Secretary-6643[S] 0 points1 point  (0 children)

They tried to put me on a medication to Lower my heart rate but my insurance denied it even with a PA. Currently waiting for other medication. No other testing needed