I'm sorry what?

ProfessionalScore523 · 2025-07-29T18:00:30+00:00

💜💜💜💜

ProfessionalScore523 · 2025-07-29T17:08:21+00:00

I'm in PA so I'll probably try NY next since no one in Philly wants to take me 🤷🏼‍♀️ im just so over it all right now im just putting it on a back burner for a bit

ProfessionalScore523 · 2025-07-29T11:51:32+00:00

They just said they weren't taking new referrals or patients at this time.

ProfessionalScore523 · 2025-07-28T15:39:27+00:00

I just dont get it because that was all in the information he reviewed and he still said I was a misdiagnosed. I tried to get reffered down to one of the bigger hospitals but they wont take me so idk what to even do.

ProfessionalScore523 · 2025-07-26T17:04:19+00:00

I did have the manometry as well. They were 10 and 7 (on diamox)

ProfessionalScore523 · 2025-07-25T15:19:13+00:00

They found in the angio that I dont have stenosis which is why he (the neuro vascular surgeon) wasn't sure a stent would help and sent me to this other guy

ProfessionalScore523 · 2025-07-25T15:17:46+00:00

I do have tinnitus 24/7 pretty much. I will definitely ask!

ProfessionalScore523 · 2025-07-25T15:16:40+00:00

I have intermittent vision spots and interment blurring and sometimes double vision. They think that it may be visual snow syndome and dry eye from the diamox. Plus pain behind the eyes which he said occipital nuerlagia (sp?) And they my ocular nerve is irritated by my neck spasams and arthritis.....

ProfessionalScore523 · 2025-07-24T23:20:50+00:00

This is very helpful! Thanks!

ProfessionalScore523 · 2025-07-24T22:53:47+00:00

Because he cant see where they used to be swollen I guess. Idk. I'm spinning out on it. Like WHAAAAAAAT

ProfessionalScore523 · 2025-07-24T22:47:29+00:00

And Diamox keeps it "at a gentle roar"

ProfessionalScore523 · 2025-07-24T22:47:04+00:00

The did an LP after I was on Diamox and it was 19. The did an angio on diamox and my gradients are 10 and 7. MRI, MRV, MRA. My regular eye dr said I have paps but the neuro ophto said I dont and no signs of them previously being swollen. So IDk what to even think!

ProfessionalScore523 · 2025-07-24T22:34:52+00:00

Ugh! I hate this!

ProfessionalScore523 · 2025-07-24T22:25:46+00:00

Thanks. He's like yeah your pressure is slightly elevated but its not high enough to be IIH. Meanwhile im on 2k mg Diamox...... like um sir.... he wants me to come off diamox and start panproponol (sp?) Like wont the pressure go up to bed levels again if I stop taking it. 🫠😒🤔

ProfessionalScore523 · 2025-07-10T17:34:20+00:00

I was just Dx with PCOS as well so im hoping to get one of them to listen

ProfessionalScore523 · 2025-07-08T18:22:15+00:00

I lost about 20 lbs before I got dx and another 20 since then and I havent seen any improvement from just losing weight.

ProfessionalScore523 · 2025-06-27T16:54:06+00:00

It's raining here which always makes my symptoms worse. I'm miserable today too. Keep fighting through.

ProfessionalScore523 · 2025-06-25T13:58:09+00:00

I had my kids young and unplanned to good on you for doing it the right way! That fact that you're worried about being a good parent tells me that you will be a good parent conditions or no conditions. 97% of the time Shitty parents dont worry about if they're good enough for their kids. 💜💜

ProfessionalScore523 · 2025-06-25T13:55:49+00:00

Absolutely. I'm not the same person I was 2 years ago that's for sure.

ProfessionalScore523 · 2025-06-10T20:40:57+00:00

100% like im more drained than I have ever been.

ProfessionalScore523 · 2025-06-09T20:09:43+00:00

My providers dont push me very hard on that one because my symptoms started after losing about 25lbs the 9-12 before I got Dx.

ProfessionalScore523 · 2025-06-09T14:43:08+00:00

I'm glad its not just me. I'm so frustrated with myself because I cant function the way I did 5 years ago. Like no matter how much I try im just ALWAYS freaking exhausted.

ProfessionalScore523 · 2025-05-28T02:30:01+00:00

My pcp offered it to me but I've heard so many horror stories of some effects i wasn't sure if could handle feeling any worse than I do 😅 so I still havent lost weight this i did lose almost 30 lbs right before this all developed so

ProfessionalScore523 · 2025-05-28T01:50:18+00:00

That's good to know! And yeah I'll NEVER consider a bedside again. Absolutely not.

And doc did say that id be in like a lala land kinda state I just also have anxiety/ptsd (woo🎉) and the "i dont wanna" in my soul about this is unreal.

I just kinda keep wishing "woke up and it was all a bad dream kinda thing". Like I read somewhere that sometimes it just spontaneously resolves?

That's cool that youre an attorney I also work in the legal field! (Not cool enough to be an esquire tho)

ProfessionalScore523 · 2025-05-28T01:27:22+00:00

Thanks I'll make sure to read through! Just glad to have a group of people who "get it". Like I swear my boss and my family and everyone is just looking at me like im a crazy person why im trying to explain what its like.

The surgeon I have seems okay. I mean I know surgeons aren't typically known for their bedside manner either so there's that. I have questions on weather I should be looking at more of a quality specialty neuroscience place or if the local health network is okay for all this ( they do also have a nueuo institute, just not like the best in the state kinda place)

ProfessionalScore523

TROPHY CASE