UCLA Jules Stein: ERG Testing Day One

UCLA Jules Stein: ERG Testing Day One

TBGirl BLOG POST TITLE: UCLA Jules Stein: My First Visit

DATE WRITTEN: 11-26-2012

DATE POSTED:

DATE BACK POSTED: 11-26-2012

NOTES/COMMENTS:

11-26-2012- First Visit to Jules Stein

Monday, November 26, 2012, 7:27 PM

My appointment was at 930 – saw an ophthalmology technician. She did the basic tests – cover the right eye then the left, read the chart, etc. Then she numbed my eyes, did the thing where they touch your eye with the pen. Then she dilated me and sent us back out to the waiting room. Mom and Dad enjoyed talking to the other patients about politics and how the world was ending, the Indians losing their land, the usual topics. I put my iPod in and listened to audiobooks and then lay down on the couch.

It was nearing lunch time at this point and I was starving. Seemed like they were taking forever. We were discussing where to get food and this nice British couple told mom and dad how to get to Ralph’s across the street. Mom and dad ran off to get food.

Mom and Dad were still gone when I got called into the room. I first saw a Fellow then Dr. Schwartz came in. He calls me Nurse Redding – it’s very sweet. He said that it wasn’t Plaquenil as he didn’t see the deposits caused by Plaquenil I took for years for Lupus.

He said he didn’t know what was going on but was going to run a bunch of tests. He’d start with the easy ones and  then if they don’t tell us what is going on, would progress  to the more “unpleasant” ones. He let me know I may have a lot of testing ahead but he would figure it out. I asked if it was my retinas and he said yes it definitely was but didn’t know what. He said it may be as simple as a vitamin A or D deficiency since I had a gastric bypass and ordered a full vitamin  panel. He wanted a brain CT to rule out neurological issues. He added a spine CT that the neurologist at Stanford ordered.

The team of three came into the room: Dr. Schwartz and his two fellows. They asked me if I had trouble seeing at night and I said yes. “You definitely have some atrophy of the retina but we don’t know what it is yet. It is some type of inherited disease and your mom probably has it too. We will do some genetic testing to see what markers it is related to”. I asked if it was retinitis pigmentosa and he said “Yes-it’s  in that family but we don’t have a diagnosis yet. Give me two weeks to figure this out. I promise you I will.” He wasn’t talking restoring my lost vision anymore; now the goal was just to figure out what the cause is and I fear that restoring the lost vision isn’t going to happen.

They asked mom if she had trouble seeing at night and she said yes so, they said “let’s look at mom right now”. They  put mom into the exam chair, dilated her and said they saw “some” atrophy but not nearly as much as I had. Then they dilated her and sent her upstairs for the same photos I had done.

While mom was getting those done, Dad and I drove to the lab for my blood tests. By the time we got done, it was nearing 5 pm – we had been there since 9am! I was starting to fade fast and desperately needed ice for my shoulder. The phlebotomist had given me a bag of ice (very sweet) but it wasn’t enough and we still had to pick up mom anyway so she walked to Ralphs and we met her there. Mom and Dad got us chicken and other treats from the deli to eat on the road. We drove home and Dad actually got us home pretty quickly considering it was rush hour. Got home around 6:30 and I was wiped out.

ORIGINAL JOURNAL ENTRY

Appt at 930 – saw an ophthalmology technician. She did the basic tests – cover the right eye then the left, read the chart, etc. Then she numbed my eyes, did the thing where they touch your eye with the pen. Then she dilated me and sent us back out to the waiting room. Mom and Dad enjoyed talking to the other patients about politics and how the world was ending, the Indians losing their land, the usual topics. I put my iPod in and listened to audiobooks and then lay down on the couch. Couldn’t stand the constant talking.

It was nearing lunch time at this point and I was starving. Seemed like they were taking forever. We were discussing where to get food and this nice British couple told mom and dad how to get to Ralph’s across the street. Mom and dad ran off to get food. While they were gone, I chatted with the British couple. The guy was the patient –very down to  earth. He has had multiple eye surgeries – has Lupus, takes methotrexate but suffers none of the side effects. His eyes “leak proteins”. He has had “gas bubbles” inserted into his eyes. Has some very rare disease that I can’t remember. Has had a vitrectomy, detached retina and surgery for that and countless other procedures. He’s a computer engineer. He wears a green wrist band that tells emergency personnel   that he can’t have nitro as it will blow up his eye. He can’t fly as the pressure will blow up his eye. They are moving  to Sweden at the end of the month so have to get clearance to fly before they move. After the gas bubble procedure, he had to lay on his right side 24/7 except to eat and go to  the bathroom to make sure the pressure didn’t blow up his eye. On Atropine – hoping the doc will stop the atropine today. Also has Sjogren’s syndrome. Takes steroids too. I’m trying to remember the name of what he has. Might be Bardet-Biedl?

Mom and Dad were still gone when I got called into the room. I first saw a fellow then Dr. Schwartz came in. He calls me Nurse Redding – it’s very sweet. He said that it wasn’t Plaquenil as he didn’t see the deposits caused by Plaquenil I took for years for Lupus.

He said he didn’t know what was going on but was going to run a bunch of tests. He’d start with the easy ones and  then if they don’t tell us what is going on, would progress  to the more unpleasant ones. He let me know I may have  allot of testing ahead but he would figure it out. I asked if it was my retinas and he said yes it definitely was but didn’t know what. He said it may be as simple as a vitamin A or D deficiency since I had a gastric bypass and ordered a full vitamin  panel. He wanted a brain CT to rule out neurological issues. He added a spine CT that the neurologist at Stanford ordered.

So he changed it to a brain CT with and without contrast. I asked him if it turned out to be a vitamin A deficiency, if that is something if he has been able to restore lost vision in patients with Vitamin A before and he said, “All the time”. Told him that if it was a nutritional deficiency, my mother would be impossible to live with as she’d never stop saying “I told you so”. He chuckled. He also said he would order an “ERG”. When he said the name, it reminded me of an EMG and he said it was like an EMG but for the eye. I asked if that was in the  “unpleasant” category and he chuckled and said, “it’s not too bad”. (Yeah right!). He ordered some eye photography and I went to the 2nd floor to have them done. It was two tests: one just looking at a blue light and they took pictures. There was a red horizontal line too but I was to look at the blue light in the middle and ignore the red one. The next one was like an angiogram for the eye. They inserted dye into my  vein (made me pee bright green and yellow for a few days). They then stick your head into the machine and take an endless number of photos. They hand me the test results then I go back downstairs to see the doc.

The team of three came into the room: Dr. Schwartz and his two fellows. They asked me if I had trouble seeing at night and I said yes. “You definitely have some atrophy of the

retina but we don’t know what it is yet. It is some type of inherited disease and your mom probably has it too. We will do some genetic testing to see what markers it is related to. I asked if it was retinitis pigmentosa and he said “Yes-it’s  in that family but we don’t have a diagnosis yet. Give me two weeks to figure this out. I promise you I will.” He wasn’t talking restoring my lost vision anymore; now the goal was just to figure out what the cause is and I fear that restoring the lost vision isn’t going to happen.

They asked mom if she had trouble seeing at night and she said yes so, they said “let’s look at mom right now”. They  put mom into the exam chair, dilated her and said they saw “some” atrophy but not nearly as much as I had. Then they dilated her and sent her upstairs for the same photos I had done.

While mom was getting those done, Dad and I drove to the lab – it was at the 200 Medical Plaza Building. It actually wasn’t far and if I were a normal walking person, I could

have walked it but dad drove me. By the time we got done, it was nearing 5 pm – we had been there since 9am! I was starting to fade fast and desperately needed ice for my shoulder. The phlebotomist had given me a bag of ice (very sweet) but it wasn’t enough and we had to pick up mom anyway so she walked to Ralphs and we met her there. I waited in the car while Mom and Dad were inside and while I was waiting, I realized I needed to go to the bathroom   before getting on the road. They got back to the car and I went to the bathroom. Mom filled my ice packs but I think the damn things have worn out. Thank God I had an old fashioned ice bag in the car- ended up using that and it worked MUCH better than those stupid disposable ones. I’ve got several of them so I’m going to make sure I have them  all over in every bag now.

We drove home and Dad actually got us home pretty quickly considering it was rush hour. Got home around 6:30 and I was wiped out. Iwent to bed to prepare for day two of torture.