I refer you to my last post as a little review. For a while, things have been getting a little more difficult here and there. everything happens gradually. little adjustments keep accruing. but then i look back, and i'm like- wait- how did i get here?! what little "inconveniences" of my body are actually new symptoms?
on and off I have had issues with my eyes. for a while it seemed I could not always look up and to the left, particularly with my left eye. eye doc checked out and all looked good. neuro didn't see anything. but i could feel this weird thing going on. particularly in the morning or evening. eye strain was also getting worse. my night vision getting worse. some days my contacts seemed to be the wrong rx while other days they were fine. i'd stopped reading for pleasure. gradually lessened my computer work. then one day, it got a little "worse" and the issue became more clear. it wasn't my eye. my eye moves fine. it was my eye lid. i woke up and literally could not open my eye lid. i could move my eyeball around. but my eye felt fused. that "dead" feeling from novocane at the dentist (unless you have EDS, lol- inside joke to EDS'rs), but around my eye. so i manually open my eye, massage the muscles and slowly i regain control over my eyelid. all goes back to normal and I consider it one of the many odd weird quirks that just start to come and go over the years. until it starts happening more often. 5-6x per week often. and my eye is getting droopier during the day. and it isn't just my left eye. while the left often seems to have a bulk of it, sometimes the left is totally fine and the right one is having problems. I figured out how to use k-tape to keep my lid open. super sexy i know, but it actually relieved a lot of the tension headache, and when left on for a few days the muscles seemed to calm down a little from the break and I had a couple days without symptoms- well worth the allergic reaction to the tape!
Here is my first attempt at taping. right eye was starting to get droopy after doing some computer work.
here is me one morning in bed when i woke up and my right eye wouldn't open.
i sent the first photo along with an explanation of what had been going on to my eye doc. he ref'd me to a neuro-opthamologist. when i called... got an appointment about a month away. thus begins the limbo. as even tho things have been going on for awhile, the decision to get it investigated and mention it to another human being, let a lone a "professional" is really when limbo begins. before that it was a quirk. now it is a potential "symptom"
i figured some close friends should be kept in the loop. so i sent an email explaining why they might see me with tape on my face. i of course got a lovely round of replies ranging from jokes to concern. many offered their ideas of things that could be going on. which i appreciate, but when my friends list off things they think it could be (as i would probably do) it is interesting but i don't get freaked out. sure possibilities of a new diagnosis- but it is all just theory and nothing of big concern. i have smart friends. but at the same time, what the heck to do they know about it?!
so why is it so different when a doctor gives you ideas on what it could be. still no actual diagnosis. but all of a sudden, it gets a little more real. even if it is a doctor that is speaking outside of their area of expertise. and i'm definitely not one of those people that thinks all docs are super smart and awesome. i avidly dislike a few of my docs and only tolerate some them as needed. i will full on tell them i know more about EDS than they do- because i do. as i should. none of them are EDS experts (as none exist in my town). but i have a few good ones. and as time goes on, able to find more good ones and weed out the tiresome ones.
the continuing issues with my neck and lack of support from my neuro (her suggestion being "get a better pillow" um, thanks- i tried that before going to a neurologist) were bothering me and the continual "wait and see" and feeling like i was not being taken seriously as things were getting worse was drove me to a new direction. found a new ortho/sports med doc that would ref me to a PT that is good friends with a fellow yoga instructor who gave rave reviews of how she treats people as individuals and isn't afraid to look stuff up. perfect! so i make an appointment with ortho. go in thinking no big deal i'll get the PT script for neck stabilizing exercises and that will be that. i've spent a lot of time in ortho offices. i thought i knew what to expect from this visit. especially as it was at a.. let's say "larger" medical group in town that i have seen many docs in many different departments and well, none of them have been very helpful. my cardiologist and I (he has a private practice) actually had a discussion about the lack of good docs in that group- and how he turned down a cushy job offer there as he didn't want to be associated with them. but again, i thought i was just using this ortho to get to the good PT (at a different location). but as i'm describing issues with my neck instability and how it is causing neuro issues... the fellow (that sees me with a resident before the "real" doc comes in) is asking questions... we go through everything i've gone through with neuro and i'm expecting the same response of "oh, just your EDS/nothing to do about it" response... but he is taking me seriously. and asking more questions. agreeing that PT will be good for my neck, but thinking that the issues with my vision/eye lid/weakening limbs might be something else. not in a panic-y or "oooh, i can write a paper" excited way... just "interested" and showing slight concern that this is more than EDS related. so he goes and discusses with "real" doc. all 3 come back, and in an actually very professional "nothing to worry about just yet, but we do think you need to be evaluated for some things" type conversation ensues. i had wanted someone to take me seriously. all of a sudden they were. and they were being a little more serious than i wanted.
The "short" list...
1. Eaton-Lambert. very rare genetic condition/autoimmune issue. fairly easy fix. but probably not what i have cause improves after moving and i usually improve after rest. also, i already have a rare genetic condition. chances of having both would make me more of a unicorn than a zebra. plus most people that have it have lung cancer... about 400 people in US have this to give you an idea of rarity... but ortho (and one friend) did mention it.
2. Myasthenia Gravis. this one looks like a fair contender esp due to eye issues. also most brought up by friends and family (!). reading about this one is "funny" as most of the literature goes says things like "no big deal... except when..." one exception being carrying around a card that explains i have MG so if i am acting like a drunk in public (slurring speech, unable to walk etc) that i should be taken to ER as it can be life threatening if muscles of respiratory system become effected and have to be on a ventilator for a while.
3. Multiple Sclerosis. while there is no direct connection between EDS and MS... there is a lot of "cross over" issues. and a few on EDS boards that I talk to also have MS. out of items on the short list, the only one i can also find EDS people have as well. so that is the concerning part there. diagnosis often through an MRI which I can't have due to wires in my spine.
4. ALS. doubtful. however, THEY ACTUALLY BROUGHT UP ALS. F that. also, "usually"doesn't effect eyes/vision. but basically, if everything else gets ruled out- it is there.
So that is what ortho wants me to bring up with neuro-opthamologist. they all have vague symptom lists that I can pretty much check off as things that have been going on for a while. muscle weakness. difficulty performing daily tasks. difficulty swallowing (sometimes my swallow reflex just shuts off). difficulty chewing. dropping things. muscle twitching. they are all "difficult" to diagnose. none have a single test that is proof positive all the time. so even if they pick one, who knows if they are right... given more time and new symptoms it could change.
so i am grumpy right now. as, it is entirely possible that all of this is "just EDS" related. tho, my posts on EDS boards about eye drooping etc have gained no responses except for suggestions of dry eye. more and more this is looking like something else. something new. something i do not have time or energy for.
as much as i am being optimistic. waiting sucks. and none of the possibles seem like a good outcome. "just" eds means nothing they can do. the short list all provide treatment options and possible improvement at least at first- even random unexplained total remission. but then, they also mean a new diagnosis- none of which i want to add to my medical resume. none of this is good.
nothing is real yet so i have no direction to throw my punches. trying to do my best and stay positive. but i'm also in a bit of a flare up- of body just being unreasonable and needing more rest and the weather is stupid and not cooperating either. humph.
i don't feel like myself. i don't want to look you in the eye and tell you about how hard it is right now. i don't want you to grieve the further frustrations this will bring to our friendship and ability to hang out. i want to suck it up. i want to keep working. i want to keep driving. i want to keep going. so, i type this, as i don't want to have a discussion about this right now. we have to wait and see. let's just act normal. everything is still a quirk. and limbo becomes a nice little form of denial for the moment- as there is nothing to worry about. head up, even if i have to hold it with my hand or rest it on my knee.
xo
No comments:
Post a Comment