For years, I have had a lot of lights, sparks, negative and positive afterimages, visual snow, floaters, lights while blinking and more. For many years I didn't even know the things had names, so I just made my own descriptions up. ;)
This new thing was much different than everything else I had experienced before...
I had a grey spot just above my center vision where I could not see anything. Yet at the same time, my brain was trying to fill it in with information surrounding it. I could only see the extent of the "blindness" while looking at detailed objects like the edge of trim, wall or text . I could also tell if say, looking at facebook, the header where it is blue, looked gray to me instead. Colors are not quite right in the spot unless I am just looking at a white or black background.
|What I see on the Amsler Grid|
Well Thursday morning comes around and it is still there, so I go in. I really hate going to doctors. Every time I do, it is bound to make me upset because often times I'm treated pretty badly. But it is not just me. I am reminded my sister had a malignant brain tumor for over a year and no one took her seriously either!
We waited for almost 3 hours in the office.
The doc remembered me as having the weird eyes.
I wasn't sure if I should be happy he remembered me or not. Last time I was there, they never really came to any conclusions. I had some retinal traction or something like that and my retinas looked white, but they had no idea why I was seeing what I was seeing.
The first pass with the slit lamp exam, the eye doctor said he saw nothing except the few really big floaters in that eye. I told him I know for a fact it is not a floater and the spot was fixed. He was trying to tell me I was just seeing a floater.
He then examines my eye with me tilted back and he was directing the light in exactly the place where the blind spot was located in my vision. He took a few slow passes.
He starts off by saying he really doesn't see anything wrong. My heart just sank...I said that is great news of course but I have a blind spot. He goes on to tell me well he did see a "spot of hypopigmentation" in that area of the retina, but he did not know what it was but wasn't sure it could cause my issue. He said he had never seen this before and had no idea what it meant.
That's what I did not want to hear from this guy. That's exactly what he said 3 years ago and eventually I had a different doctor take a look at me. The different doctor was highly confused why I was being checked so often. He said everything was fine and that the retina was a bit shiny, but that it's benign (White without pressure) and told me I did not need to be seen again unless something came up.
So here we go again. Same deal. Doc has no idea what it is, yet he orders no further testing, does not refer me to go to another doc. He just told me to wait another 2 weeks...I feel like I'm reliving the same thing over again.
I have a hunch of what it might be and I tried to pass this along to the doctor, but was met with resistance from the nurse. She basically just yelled at me on the phone for a good 5 minutes. Telling me the internet is a "dangerous" place and that I was "questioning the doctor's training and experience". etc etc etc I prayed as she was yelling at me and just said, God please be with this woman who is taking her frustration out on me for something in her own life.
The good news is that the prognosis is typically good, but it varies for everyone. Bad thing is, with it being so rare (0.45 per 100,000 people), it seems like they really do not know.
For comparison- Addison's Disease is 1 per 100,000. POTS is 170 per 100,000.
At the moment, it looks like it is not something that will be permanent but only time will tell. Thank you Jesus it wasn't the first signs of MS. I was freaking out about the possibility because I have lots of MS symptoms that are quite similar to POTS. I still pray for this spot to be healed completely in Jesus' name and not progress any further.
I'm waiting on a few other health miracles right now, so I really don't want to see that list getting any longer. hahah! ;)