I have a retinologist I've been seeing in Lubbock for two months now. I really like him. He's been the only doctor out of 10 eye docs that has taken any interest in what is going on with my eye and made me feel like I'm not a crazy lunatic. I've seen him three times in the past two months..mostly for testing and, of course, exams.
He diagnosed me with something called Retinoschisis. The best description of what it's like is for instance if you take a two-ply piece of toilet paper and pull it apart..that's the same thing my retina is doing. I was diagnosed with this the first time I saw him.
Well, he told me something is not adding up though to where my schisis is and the part of vision loss I am reporting. He can't physically see what my complaint is, but he knows it's there (hard to explain)..hence the problem I've faced with other docs looking at me like I'm a lunatic. So he went through all of my lab reports from the Mayo Clinc and all the other docs I've seen. He asked me if I had ever contracted West Nile because that's the only case he's seen this in that's even similar to mine. I told him..not that I know of..It could of been possible..because sometimes you have symptoms of West Nile and sometimes you don't.
And back when West Nile was really bad around here was when all of this started happened and I lost my vision. But I'll never know. :(
So he wanted me to see another specialist for a 2nd opinion. He works in the same group of docs from Dallas.
There is another specialist that comes to Lubbock once a month from Dallas so he made me an appointment with him.
This is who I've seen most recently. Last Friday, in fact.
He looked in my eyes..went over all of my records and reports..and he said let me think about this for a minute.
He was stumped! He said..what we have here is very rare
it's like when I look into your eye or any doctor looks into your eye..you cannot tell anything is wrong except for the retinoschisis. but when I do the testing (visual field testing, angiogram of my eye, etc.) it's showing a different thing..but it doesn't show what.
He asked me if I had been on any rare or strange diet..I said, no.
He asked if I had any tumors or masses in my body..not that I know of
He said..well we will have to look into all of this.
So he said there is another test that I need to get done..but it's only done in Dallas
it's called an ERG.
They deaden my eye and put an electrode on my eyeball. The electrodes measure the electrical activity of the retina in response to light. I also have to have another visual field test. This time one that is only done there, as well..cause it's an older machine that shows a broader scan of the field.
He said..after these tests..it should tell them if I have what is called AZOOR. AZOOR, called
Acute zonal occult outer retinopathy is a poorly-understood retinal disease characterized by sudden onset of photopsias (flashing lights) and visual field changes in an individual with a normal retinal exam. This disease affects women three times more frequently than men and most people affected are Caucasian, middle-aged, and myopic. A viral illness has preceded many of the reported cases. Initially, only one eye is involved, but the other eye may be affected months to years later.
If I don't have this..then he said they are going to look into me having an antibody disorder.
There is one called AIR, Autoimmune retinopathy. And then there is also the other called CAR, Cancer-Associated retinopathy. I praying that if I do have the antibody part that it's not CAR.
They will be able to find this out by blood test..but it will take a while cause they have to send it off to the lab in Oregon, I think is where it was.
It's really rare so there is not a whole lot of info on any of it.
The AIR antibody they can treat with immunosupressant drugs.
Not sure about the CAR one.
The only thing with this ERG test too is that with me having the schisis..it may debilitate the test..meaning not show correct results. I'm bummed about that.
So I was really down about this. My 35th birthday is coming up and all I can think about it how I do not want to end up blind at such an early age..let alone at any age.
I've been dealing with this crap for three years.
I've seen 11 eye doctors for this ..been to Dallas, Fort Worth, Minnesota, Odessa, and now Lubbock doctors. This is the only set of doctors that are really interested in my case and have treated me like I'm not crazy for seeing what I see or don't see
I've had to be my own advocate and I'm glad I've stuck with it but it's been tiring--emotionally and physically draining.
I am going to Dallas on August 20th.he wanted me to go sooner but the ERG isn't given very often and I guess others are in line first to get it done. He arranged for me to do the ERG, get the ERG read by the doc that reads them, and also I am seeing a 3rd specialist who is extremely interested in rare cases of this antibody disorder. He said he's really smart and has done a lot of research about it..so that gives me hope. I'm just praying they can figure it all out ..I can get a final correct diagnosis and we can figure out a treatment plan. They are worried because I've had all these other neurological issues etc going on throughout the years along with it. I've been hanging in there. I'll post more about what happens in Dallas with an update. My neurological issues haven't escaped me..wish they had..but I've definitely learned to manage them a whole lot better. I still tremor at times but have grown use to it. I just take my medication and go on about my day. I still have non-epileptic seizures..but not nearly as bad as they were. Thank goodness cause this was the most debilitating part of it all. There is not much I can do but hand it over to God and entrust that he'll do what is best for me and my future.