Definitely a day
quat
Thread Starter
Join Date: Jul 2013
Location: terra (mostly)firma
Posts: 4,823
Definitely a day
Just not sure if it was a good bad day, or a bad good day. Or both or neither , but definitely a day.
Little background: a few months ago I started experiencing double vision which was concerning because eye wise the only problems I had was needing "cheaters" for about the last two years. I'm 48 so that was at least expected. Not so much the Diplopia , yesterday I got a fairly convincing diagnosis from a neuro-ophthalmologist and a script for a pretty definitive test, but am proceeding with advice to start medication for probable cause, myasthenia gravis an autoimmune disease that causes muscle weakness, immediately.
My own googling had me leaning in that direction , but was holding out a little hope that it could be something else, like maybe just me being paranoid and it was some hysterical, temporary, self correcting thingy.
The diagnosis sucks, obviously, but from all I've read so far , it is a very manageable condition , and for a certain percent of people affected the only muscle groups involved stay localized to the muscles around the eyes.
As the doctor said , good news no brain tumor or MS and have a good chance of confirming the cause.
Other good news , I drove a few hours to appointment and had to spend time waiting for dilation drops to wear off , had a nice lunch outside in some gorgeous weather. Twinge of bad news , I ducked into the tavern not long before posted opening time to see if I could sit and wait. There were already people at the bar and the bartender was busy pouring whiskey, AV starts grumbling throwing up some self pity, past associations with that particular establishment, alone, how could anybody blame you on day like...yada yada.
Really great news , after about thirty seconds looking around at the patrons for prospective afternoon fast drinking friends /co-commiserators , I was struck with a feeling of pity for them , it was a beautiful day well before noon , the real way to truly enjoy the day was out on the deck with some great potato soup and a Reuben.
It would have been a better day without the thirty seconds, but it's early for me still I suppose(three years this summer, yeah me), still grateful for what I do have and not looking to make anything worse, on purpose.
Little background: a few months ago I started experiencing double vision which was concerning because eye wise the only problems I had was needing "cheaters" for about the last two years. I'm 48 so that was at least expected. Not so much the Diplopia , yesterday I got a fairly convincing diagnosis from a neuro-ophthalmologist and a script for a pretty definitive test, but am proceeding with advice to start medication for probable cause, myasthenia gravis an autoimmune disease that causes muscle weakness, immediately.
My own googling had me leaning in that direction , but was holding out a little hope that it could be something else, like maybe just me being paranoid and it was some hysterical, temporary, self correcting thingy.
The diagnosis sucks, obviously, but from all I've read so far , it is a very manageable condition , and for a certain percent of people affected the only muscle groups involved stay localized to the muscles around the eyes.
As the doctor said , good news no brain tumor or MS and have a good chance of confirming the cause.
Other good news , I drove a few hours to appointment and had to spend time waiting for dilation drops to wear off , had a nice lunch outside in some gorgeous weather. Twinge of bad news , I ducked into the tavern not long before posted opening time to see if I could sit and wait. There were already people at the bar and the bartender was busy pouring whiskey, AV starts grumbling throwing up some self pity, past associations with that particular establishment, alone, how could anybody blame you on day like...yada yada.
Really great news , after about thirty seconds looking around at the patrons for prospective afternoon fast drinking friends /co-commiserators , I was struck with a feeling of pity for them , it was a beautiful day well before noon , the real way to truly enjoy the day was out on the deck with some great potato soup and a Reuben.
It would have been a better day without the thirty seconds, but it's early for me still I suppose(three years this summer, yeah me), still grateful for what I do have and not looking to make anything worse, on purpose.
Member
Join Date: Oct 2012
Posts: 5,937
The beginning of wisdom! By that I mean when you reach the point where instead of envying the drunks you feel a bit sad for them, that's wisdom. I agree- the last thing I want do now on a beautiful summer day is sit in a dark, dank bar poisoning myself.
Sorry about your condition. I must confess I don't know anything about it. Hopefully it's manageable. It seems lots of little things creep up on you as you get older. I'm 47 myself...in fact it was my birthday today. For awhile I guess I thought eventually I'd stop getting older and start getting younger again!
but it doesn't look like it's gonna happen.
All in all as you say, it sounds like a day.
Sorry about your condition. I must confess I don't know anything about it. Hopefully it's manageable. It seems lots of little things creep up on you as you get older. I'm 47 myself...in fact it was my birthday today. For awhile I guess I thought eventually I'd stop getting older and start getting younger again!
but it doesn't look like it's gonna happen. All in all as you say, it sounds like a day.
Member
Join Date: Jun 2015
Posts: 2,580
yeah, that was definitely a day! Understandable that the AV would try to strike, while you're trying to come to terms with a new medical diagnosis. I don't know anything about the condition, but all best wishes to you in managing it.
quat
Thread Starter
Join Date: Jul 2013
Location: terra (mostly)firma
Posts: 4,823
Hard to believe it's been a year since the double vision started and stopped , and started again and stopped..
Tomorrow I have an appointment for presurgical ecg and blood tests, for a scheduled Thymectomy on the 28 th. Starting to get a little nervous , tbh. My wife laughs when I get a real "good" cold/flu with all the whining and all, lol(sheepishly)
Tomorrow I have an appointment for presurgical ecg and blood tests, for a scheduled Thymectomy on the 28 th. Starting to get a little nervous , tbh. My wife laughs when I get a real "good" cold/flu with all the whining and all, lol(sheepishly)
quat
Thread Starter
Join Date: Jul 2013
Location: terra (mostly)firma
Posts: 4,823
Tests went fine everything is set for next week.
I feel fine, aside from reoccurring bouts of double vision, hard to find a cool looking eye patch, lol. Talking with the physician assistant alleviated a lot of my concerns today. First surgery, so a little nervous but expected I suppose.
The condition , myasthenia gravis, can be exacerbated by surgery, but she explained that although they keep all mg patients overnight for observation, any reactions are extremely rare and she actually hasn't encountered any since she has been with this doctor.
Not loving that having this procedure, removal of the thymus gland located right behind the sternum, makes it more real? It is the recommended treatment for the diagnosis to help keep remission rates high and use of corticosteroids at lower doses and such going forward.
I'm in the two year ish window , from first symptoms (usually ocular weakness) to see if the condition 'generalizes' and effects other muscle groups. The condition is very manageable long term, so that's good obviously, just that if a ' crisis ' occurs it can mean hospitalization for breathing difficulties, and unfortunately it seems that can manifest with little warning or seeming cause.
The surgery date being here , just kind of made it feel a lot realer, quicker than I was ready for.
Thanks for asking and letting me vent
, promise I'm getting my big boy pants out and putting them on
Walking around the hospital today , I saw a lot of people dealing with much bigger things, grateful that for now all I really have to worry about is squinting and trying to make the pirate look work
I feel fine, aside from reoccurring bouts of double vision, hard to find a cool looking eye patch, lol. Talking with the physician assistant alleviated a lot of my concerns today. First surgery, so a little nervous but expected I suppose.
The condition , myasthenia gravis, can be exacerbated by surgery, but she explained that although they keep all mg patients overnight for observation, any reactions are extremely rare and she actually hasn't encountered any since she has been with this doctor.
Not loving that having this procedure, removal of the thymus gland located right behind the sternum, makes it more real? It is the recommended treatment for the diagnosis to help keep remission rates high and use of corticosteroids at lower doses and such going forward.
I'm in the two year ish window , from first symptoms (usually ocular weakness) to see if the condition 'generalizes' and effects other muscle groups. The condition is very manageable long term, so that's good obviously, just that if a ' crisis ' occurs it can mean hospitalization for breathing difficulties, and unfortunately it seems that can manifest with little warning or seeming cause.
The surgery date being here , just kind of made it feel a lot realer, quicker than I was ready for.
Thanks for asking and letting me vent
, promise I'm getting my big boy pants out and putting them on Walking around the hospital today , I saw a lot of people dealing with much bigger things, grateful that for now all I really have to worry about is squinting and trying to make the pirate look work
quat
Thread Starter
Join Date: Jul 2013
Location: terra (mostly)firma
Posts: 4,823
I'm sure I'll be fine , they do these procedures all the time. This thoracic surgeon actually specializes in thymectomies. One caveat and the only one on the release form was that if during the procedure the surgeon makes the determination that total removal of the gland and associated tissue requires cutting or even splitting the sternum they will proceed during the operation. So recovery can go from 3-5 days of 'easy' to a few weeks of less easy , so I'll be anxious to wake up and hear the news. I know it's one of the risks and what will be will be, just one more thing to fixate on and ponder, lol.
Still being somewhat familiar with what you are going through ,Algo, I'm getting off easy
Good luck to you too!
Still being somewhat familiar with what you are going through ,Algo, I'm getting off easy
Good luck to you too!
quat
Thread Starter
Join Date: Jul 2013
Location: terra (mostly)firma
Posts: 4,823
Re big boy pants
Could've used a pair going down the hallway in the hospital, was a little loopy from the meds but wanted to get up and about right away after waking to the good news , and the not so good news about having had a foley cath placed. They removed it during the night, but said without a certain amount of urine output they would have to reinsert , this time awake and fully aware , yikes. Asked if getting up and about would help, they said sure, so grabbed all the water I could get and got up, forgot about the robe .. so modesty wasnt the only thing out the 'window' .
Three or so days later and haven't even had Tylenol today
Could've used a pair going down the hallway in the hospital, was a little loopy from the meds but wanted to get up and about right away after waking to the good news , and the not so good news about having had a foley cath placed. They removed it during the night, but said without a certain amount of urine output they would have to reinsert , this time awake and fully aware , yikes. Asked if getting up and about would help, they said sure, so grabbed all the water I could get and got up, forgot about the robe .. so modesty wasnt the only thing out the 'window' .
Three or so days later and haven't even had Tylenol today
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