What I snuck out and did today....
- Status
rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Al, You are a dear
I've received several private messages about my eye, the digestion thing, etc, and did not realize until today that for a while this thread had been closed (and Al fixed it for me)
Basically, I don't know, don't know, and don't know.....
Re: my eye, follow up visit yesterday did not give enough information, for one thing, the last laser surgery did not open up the drain as much as my doctor wanted, so, again she did not dilate it. She does not want to speculate what she's seeing (as she is a glaucoma specialist) and is insisting I go see the retina specialist that is in the group with her. So, next week I will see this doctor, there definitely is something going on in there....
I had the gastric solid barium study done, don't have the results, & don't have the procedure ( my tummy botox, as Beth put it) scheduled yet either. My regular ALS multidisciplinary appt is this coming Tuesday, so perhaps, after that I will know something ~ anything :-?
It is a bummer about not being able to enjoy eating, I was never a "foodie" but, its such a social thing to do, and easily taken for granted. However, I count myself so fortunate compared to many on here. & I'm set for the weekend. I have a huge container of triple espresso gelato from Whole Foods ~ which I can taste ~ and a couple of very nice bottles of wine ~ which I can taste and hopefully not choke on too much, and now that I have a Netflix membership, I've got the dvd of the first season of Remington Steele to go with the gelato and wine. 8) So, instead of damn the torpedoes, its damn the calories (that part is nice!) and full speed ahead.
I've received several private messages about my eye, the digestion thing, etc, and did not realize until today that for a while this thread had been closed (and Al fixed it for me)
Basically, I don't know, don't know, and don't know.....
Re: my eye, follow up visit yesterday did not give enough information, for one thing, the last laser surgery did not open up the drain as much as my doctor wanted, so, again she did not dilate it. She does not want to speculate what she's seeing (as she is a glaucoma specialist) and is insisting I go see the retina specialist that is in the group with her. So, next week I will see this doctor, there definitely is something going on in there....
I had the gastric solid barium study done, don't have the results, & don't have the procedure ( my tummy botox, as Beth put it) scheduled yet either. My regular ALS multidisciplinary appt is this coming Tuesday, so perhaps, after that I will know something ~ anything :-?
It is a bummer about not being able to enjoy eating, I was never a "foodie" but, its such a social thing to do, and easily taken for granted. However, I count myself so fortunate compared to many on here. & I'm set for the weekend. I have a huge container of triple espresso gelato from Whole Foods ~ which I can taste ~ and a couple of very nice bottles of wine ~ which I can taste and hopefully not choke on too much, and now that I have a Netflix membership, I've got the dvd of the first season of Remington Steele to go with the gelato and wine. 8) So, instead of damn the torpedoes, its damn the calories (that part is nice!) and full speed ahead.
rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
the whole eye thing....
How I long for clear cut answers! Today I saw my glaucoma specialist and the retina specialist. I had a fluorescein angiogram. After which I was given two hypothesis's.
The most likely one (they feel) is that I had an acute glaucoma attack, that it was not a migraine. This caused the optic nerve to swell and bleed into my retina. I now have what appears to be bruising, and also some scarring. They think the scarring is not as recent, it is left over from an earlier event.
Scenario #2 is that I may or may not have had an acute glaucoma attack, and what is showing up in my retina is the beginning of macular degeneration. Given my young age (for MD) and the fact that I have glaucoma, this is not as likely. However, as glaucoma usually affects the peripheral vision, and the spots are more in my center vision, it is also an argument for the MD.
All I can say is it had better not be the macular degeneration. I've been counting on my eyes holding up regardless of what happens with the rest of my body!
The retina specialist had a pretty heavy eastern european accent, so I'm not really sure of anything else she said. It was an interesting conversation, she kept asking me to repeat myself, and then I'd ask her again what she said LOL.
The little speck that seems to be missing out of my vision will "probably" not get any larger, and its caused by the more concentrated area of scarring. She said as it is not dead center, that it should not cause me problems and my brain will eventually compensate where I don't notice it.
Now.... you ladies will enjoy this. (and men, just skip it, you won't understand, trust me)
I was trying to be a "good"ALS patient, and plan out my day to conserve my energy ~ So, I planned to leave the doctor's office, and go to a shopping mall that is close by to it (for your Jerseyites the Mall at Short Hills) because it is such a great mall, and is quite a drive from where I live but quite close to the eye doctor.
I planned on checking out this new formula of foundation by Makeup Forever at Sephora.... the high def stuff is supposed to be really great. Well, this test they did involved me having the injection with a yellow dye. By time I left there, my eyes were yellow, and the skin on my face was really yellow too. Seriously now, I don't know about anyone else, but I rarely shop for foundation, it wasn't like I knew what shade I needed and could just run in and get it and how could I possibly hope to match it to my skin when I looked like a flushed lemon! So.... no shopping for me, I took myself home and finished off the rest of the gelato instead 8)
How I long for clear cut answers! Today I saw my glaucoma specialist and the retina specialist. I had a fluorescein angiogram. After which I was given two hypothesis's.
The most likely one (they feel) is that I had an acute glaucoma attack, that it was not a migraine. This caused the optic nerve to swell and bleed into my retina. I now have what appears to be bruising, and also some scarring. They think the scarring is not as recent, it is left over from an earlier event.
Scenario #2 is that I may or may not have had an acute glaucoma attack, and what is showing up in my retina is the beginning of macular degeneration. Given my young age (for MD) and the fact that I have glaucoma, this is not as likely. However, as glaucoma usually affects the peripheral vision, and the spots are more in my center vision, it is also an argument for the MD.
All I can say is it had better not be the macular degeneration. I've been counting on my eyes holding up regardless of what happens with the rest of my body!
The retina specialist had a pretty heavy eastern european accent, so I'm not really sure of anything else she said. It was an interesting conversation, she kept asking me to repeat myself, and then I'd ask her again what she said LOL.
The little speck that seems to be missing out of my vision will "probably" not get any larger, and its caused by the more concentrated area of scarring. She said as it is not dead center, that it should not cause me problems and my brain will eventually compensate where I don't notice it.
Now.... you ladies will enjoy this. (and men, just skip it, you won't understand, trust me)
I was trying to be a "good"ALS patient, and plan out my day to conserve my energy ~ So, I planned to leave the doctor's office, and go to a shopping mall that is close by to it (for your Jerseyites the Mall at Short Hills) because it is such a great mall, and is quite a drive from where I live but quite close to the eye doctor.
I planned on checking out this new formula of foundation by Makeup Forever at Sephora.... the high def stuff is supposed to be really great. Well, this test they did involved me having the injection with a yellow dye. By time I left there, my eyes were yellow, and the skin on my face was really yellow too. Seriously now, I don't know about anyone else, but I rarely shop for foundation, it wasn't like I knew what shade I needed and could just run in and get it and how could I possibly hope to match it to my skin when I looked like a flushed lemon! So.... no shopping for me, I took myself home and finished off the rest of the gelato instead 8)
Zaphoon
Extremely helpful member
- Joined
- Aug 2, 2008
- Messages
- 2,857
- Reason
- DX UMND/PLS
- Diagnosis
- 08/2011
- Country
- US
- State
- Missouri
- City
- Springfield
Rose, the picture of you looking like "a flushed lemon" because of the eye dye was hilarious! Yep, I'd say you picked the wrong day to look for foundation...
The unexpected consequences of life are sometimes awkward at the most inopportune times. My own words...
P.S. to AL,
I closed a bunch of my own threads a week or so ago and decided to reopen them. Could I have mistakenly closed one of Rose's threads (like this one)? If I'm the culprit - my apologies!
The unexpected consequences of life are sometimes awkward at the most inopportune times. My own words...
P.S. to AL,
I closed a bunch of my own threads a week or so ago and decided to reopen them. Could I have mistakenly closed one of Rose's threads (like this one)? If I'm the culprit - my apologies!
Last edited:
brendapals
Senior member
- Joined
- Jul 6, 2008
- Messages
- 957
- Reason
- PALS
- Diagnosis
- 06/2008
- Country
- US
- State
- any
- City
- any
rose,
bless your heart, I'm sure the "lemon" appearance was not much fun. Rest yourself this afternoon8)
bless your heart, I'm sure the "lemon" appearance was not much fun. Rest yourself this afternoon8)
BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Rose ... Scenario No 2 is a no-no. I forbid you to have MD, and shame on your doctor for even mentioning it. That is not going to happen.
As to the foundation, I'm sure you would look just as good in lemon yellow as any other shade, and I'm sure the gentlemen on this forum would agree. :lol:
On this same subject, my latest mystery symptom has gone away ... my eyeballs are no longer painful. Two or three months was enough, I guess.
Hang in there ! (And welcome to the thousand message club!)
As to the foundation, I'm sure you would look just as good in lemon yellow as any other shade, and I'm sure the gentlemen on this forum would agree. :lol:
On this same subject, my latest mystery symptom has gone away ... my eyeballs are no longer painful. Two or three months was enough, I guess.
Hang in there ! (And welcome to the thousand message club!)
Zaphoon
Extremely helpful member
- Joined
- Aug 2, 2008
- Messages
- 2,857
- Reason
- DX UMND/PLS
- Diagnosis
- 08/2011
- Country
- US
- State
- Missouri
- City
- Springfield
Beth, I'm happy to hear your eyeballs are feeling better. Eyepain is no fun (neither is any other pain, for that matter although I hear some people are in to certain types of it - especially if leather and whips are involved).
And I agree; Rose would look good any color - orange, purple, green, etc...:grin:
And I agree; Rose would look good any color - orange, purple, green, etc...:grin:
Last edited:
rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
You guys are the best! I'm starting to normalize, but my pee (just thought I'd share) is still florescent yellow! That test was no fun either, give me an EMG any day over that! Having the eyes dilated and having to stare into a bright light was really unpleasant. The technician that did the actual test put his thumb on my upper eye lashes and clamped my eye open so that I couldn't blink it even if I wanted to!
Beth I agree, I couldn't even believe I was hearing that the MD was a possibility. I'm glad your eye pain has vanished, you've had more weird stuff come and go, too bad you can't be selective!
Zaphoon and Ktmj, you both seem to be real renaissance men, however, it is my firm belief that there is no need to accompany the ladies into a Sephora (i.e. Makeup Nirvana) store or cosmetic counter, as you just don't need to know how much we pay to appear to look "born that way" :wink:
Beth I agree, I couldn't even believe I was hearing that the MD was a possibility. I'm glad your eye pain has vanished, you've had more weird stuff come and go, too bad you can't be selective!
Zaphoon and Ktmj, you both seem to be real renaissance men, however, it is my firm belief that there is no need to accompany the ladies into a Sephora (i.e. Makeup Nirvana) store or cosmetic counter, as you just don't need to know how much we pay to appear to look "born that way" :wink:
ktmj
Distinguished member
- Joined
- Oct 17, 2008
- Messages
- 421
- Country
- US
- State
- Dixie
- City
- Redneck
rose, real beauty cannot be enhanced or covered up by make-up! I know you ladies might spend a lot on that stuff, but "us guys" know good stuff when we see it, make-up or not!
p.s. That make-up is usually not there when you wake up in the morning!:razz:
Otherwise, how could you be attracted to us hairy old men!:-D
p.s. That make-up is usually not there when you wake up in the morning!:razz:
Otherwise, how could you be attracted to us hairy old men!:-D
Zaphoon
Extremely helpful member
- Joined
- Aug 2, 2008
- Messages
- 2,857
- Reason
- DX UMND/PLS
- Diagnosis
- 08/2011
- Country
- US
- State
- Missouri
- City
- Springfield
Rose,
I'd go make-up shopping with you, regardless if you need it or not. Hey, we're all just a little ugly when we wake up in the morning. Shucks, throw some eyeliner on me and call me beautiful!
I'd go make-up shopping with you, regardless if you need it or not. Hey, we're all just a little ugly when we wake up in the morning. Shucks, throw some eyeliner on me and call me beautiful!
sukilou
Active member
- Joined
- Sep 12, 2008
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 09/2008
- Country
- US
- State
- Or
- City
- Troutdale
Hi Diane Rose,
Just wanted to tell you that a very good friend of mine has macular degeneration. She was diagnosed 6 yrs ago and is now 69 yrs young. She had one minor eye surgery (don't remember the name of it) and has lost no vision. She takes vitamin B 12 supplements and must wear sun blocking glasses when outside. So if your eye problem is MD, I wanted to share her experience with you to show that it can be manageable.
I thought when you wanted to share your "girl" story with us that it would have something to do with the yellow pee.:lol: There's no way I can go shopping anymore without first mapping out all the restrooms, and then it is always a gamble if I can hobble there in time.:roll:
Just wanted to tell you that a very good friend of mine has macular degeneration. She was diagnosed 6 yrs ago and is now 69 yrs young. She had one minor eye surgery (don't remember the name of it) and has lost no vision. She takes vitamin B 12 supplements and must wear sun blocking glasses when outside. So if your eye problem is MD, I wanted to share her experience with you to show that it can be manageable.
I thought when you wanted to share your "girl" story with us that it would have something to do with the yellow pee.:lol: There's no way I can go shopping anymore without first mapping out all the restrooms, and then it is always a gamble if I can hobble there in time.:roll:
rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Lonna, thank you for the advise, I will start taking the B12 supplements. It certainly can't hurt me. ~ or maybe though just a B complex to stay balanced?.... will research it. I just can't see how its this, (other than by being told by a specialist that it might be.) What ever happened to concise "I'm certain this is what you have" diagnoses! & I agree that its always good to know where the bathrooms are. I have a semi-phobia about public restrooms anyway (which went so well with my career as a flight attendant NOT!)
Z & K .... are you sure you aren't related? The entertainment factor never disappoints when you two post! You are both very sweet, in a he-man macho way of course. :wink:
Z & K .... are you sure you aren't related? The entertainment factor never disappoints when you two post! You are both very sweet, in a he-man macho way of course. :wink:
brendapals
Senior member
- Joined
- Jul 6, 2008
- Messages
- 957
- Reason
- PALS
- Diagnosis
- 06/2008
- Country
- US
- State
- any
- City
- any
rose-
It is sad they can't do a "I'm certain this is what you have" diagnosis................guess so they can still call it PRACTICING MEDICINE!:lol::lol::lol::lol:
I'm laughing too hard to type at this very moment!
It is sad they can't do a "I'm certain this is what you have" diagnosis................guess so they can still call it PRACTICING MEDICINE!:lol::lol::lol::lol:
I'm laughing too hard to type at this very moment!
- Status
