[jrae]

so apparently this **** just continues to happen and pile on......


Thursday i was hit with some massive news. i was at a new eye doctor (ophthalmologist) getting what was basically a second opinion exam, which was ordered & set up by my eye doctor to make sure they weren't missing anything.

this doctor discovered that i have swelling around my optic nerve, which connects the brain with the eyeball. and for me, it's in both eyes! they explained to me that this swelling is caused by increased pressure in my brain (called increased intracranial pressure)!

they ran thru the next info so fast that i could barely take it all in.
first is to have a lumbar puncture done, so the increased pressure level can be measured and tests done to find out what's causing it. as soon as results are in, i go back to them to find out the info & treatment options.
second, i need to find a "good" neurologist, as having increased pressure in your brain is something that needs treatment! (sounds like a long journey)
then third is to get in with a doctor specialist called a neuro-ophthalmologist - since what is going on with my eyes and vision will require specialized treatment and monitoring (again, sounds long term). and there's only 2 in the region, which hints at exactly how specialized this stuff actually is!!

right now i can barely move, let alone having enough brain & mind power to process all this! all i know is i'm all alone......



back-story info: could use something

[MickeyCheeky]

So Sorry for what you're going through! Please Do not give up! It does seem like a long treatment, but i am not knowledgeable about this so i am not sure. Have you Tried to pose some more specific questions to your doctor? Perhaps they can tell you whether this is something that is going to be Long and/or something that you should be worried about. i think it is your right to ask. i Hope that Everything will go well. Please do keep us updated if you want to. Sending many Safe, warm hugs to BOTH you, @jrae, your Family, your Friends and ALL of your Loved Ones! Keep fighting and keep rocking NO MATTER WHAT HAPPENS, OK?!

[jrae]

i have my Lumbar Puncture exam /test on Tuesday the 13th. and I'm nervous. i've been feeling sick lately, with increased symptoms. and i guess i'm scared that's a sign of my brain getting worse

[CANDC]

@jrae I am sorry for the unsettling news you received.

When I get bad news my worrying mind can concoct some exaggerated stories of how bad things are. I hope you get some good news after the test.

[jrae]

update: my test results were normal. it is a good thing and yet at the same time, a not-so-good thing. thanks all!


it's been a weird week but today, it just got nerve-racking! um, i'm still trying to process things, so part of this may come off as raw-emotions / feelings!

i woke up from my nap this afternoon - needed one as i was just physically feeling awful. i look at my cellphone, which was my alarm, and see i have a new text. i'm shocked to see who it is from! it's never a "good thing" when a doctor texts you saying, "call my cell"! [we had never texted before either]

long story short, i had emailed him a couple questions - to which he responded it would be too long to type, so hence the phone conversation.

i'm "in the process" of doing a referral to a specialist called a neuro-ophthalmologist. and there are 2 facilities to choose from. i haven't made my decision yet, mostly due to my electronic-health-record concerns!
so i'm on the phone with my optometrist doctor, the one who's been treating me for a year & a half now for double vision (and other things). he's basically NOW telling me to make a decision, rather quickly, since my situation and things (worsening / growing symptoms) have become of the urgent nature!!!

i haven't been told that by any doctor yet, so hearing it has me kinda down right terrified! i knew my new symptoms of daily headaches and nausea was a bit concerning. but combined with my new eye-symptom of papilledema, puts things at a whole new level (i guess)!!!

facility 'A' is a one-way 3 1/2 hour drive and facility 'B' is a one-way 5 hour drive (or a little more). so my head is just filling with thoughts of making those long-trips over & over again all by myself. which normally wouldn't be any issue, but 'urgent medical conditions' change things!

i have no one IRL to talk to, none! and so i'm struggling to make it thru, which is evident by my recent posts on here - and also my 'lengthy absent' periods as well! i'm just ......... i don't know anymore
[ you guys are all i've got ]

[CANDC]

@jrae I am glad your test results came back normal. That is a good sign.

Uncertainty is so difficult to deal with. It can really make anxiety worse.

I find youtube videos help me feel comforted and soothed. Here is one that reminds me of the grandfather I never got to know.

@CANDC

[MickeyCheeky]

So Sorry! Please Do not give up! Have you tried to ask for more details to your doctors? Perhaps they may be able to better explain it to you so that you'd feel slightly more comfortable at least. i Hope that the situation will improve really soon and that everything will go smoothly. Please do update us if you want to if possible. i agree with the wise and wonderful CANDC about checking out videos and articles to try to relax if possible. Sending many Safe, warm hugs to BOTH you, @jrae, your Family, your Friends and ALL of your Loved Ones! Keep fighting and keep rocking NO MATTER WHAT HAPPENS, OK?!

[jrae]

sorry for the delayed response. and thanks all!


it's just been a train-wreck the past few weeks. seems like i've barely had time to think (or even the energy to). i had three doc appts this week and two more last week. last weekend i kinda smashed my thumb . the worst thing about that is it actually was my 3rd injury in just 12 days!!

this week ......... the doctor on monday told me possibly some "autoimmune muscle disorder". the doctor on thursday said "fibromyalgia"! there's still a bunch that needs to be figured out. but dam, most of those three are chronic and have no cure!

my head is just spinning! i just don't know what to make of this, or even how to process it. and there are still some things that just don't make sense. it will take quite some time to wrap my head around this.
my doctor on monday (the Internal Medicine doc who's become my pcp) is concerned because i keep getting worse, little by little each time! so i'm not the only one noticing that!!! i just don't know anymore.............

[TunedOut]

Originally Posted by jrae

this week ......... the doctor on monday told me possibly some "autoimmune muscle disorder". the doctor on thursday said "fibromyalgia"! there's still a bunch that needs to be figured out. but dam, most of those three are chronic and have no cure!

my head is just spinning! i just don't know what to make of this, or even how to process it. and there are still some things that just don't make sense. it will take quite some time to wrap my head around this.
my doctor on monday (the Internal Medicine doc who's become my pcp) is concerned because i keep getting worse, little by little each time! so i'm not the only one noticing that!!! i just don't know anymore.............

Jrae Hugs and sorry you are dealing with so much. Since the doc said "possibly", it sounds like they still are not sure but at least they seem to be more proactive than before (what I recall from previous threads) and are prioritizing your care more that before. They finally seem to be on the case! Please hang in there and take it one day at a time. Hugs and prayers.

[jrae]

i have my appt with the eye specialist next week, and i'm getting super nervous! it's a massive day and will have massive potentials, for whatever outcomes happen!! and i'm pretty scared.........


in other news, recent events have dumped some heavy bombs on me, including: hypervigilance, hypserarousal, and acute stress disorder; and now a new physical-health symptom of vertigo (or at least a balance disorder/problem)!