So before I get into my appointment that I had today with my migraine specialist at USF I will fill you in on my appointment last week with my neuro ophthalmologist.
Several months ago he seemed really excited about the visual snow study so I took the time to get nice colorful folders and put every single study I had into them along with a print out of my symptoms. I handed it to him after I sat down, he briefly skimmed through and asked me some questions about it. I showed him where they said the error is in the brain and some things about treatment, etc. (There isn't any) - all he did was raise a brow. I then proceeded to tell him I am trying to get disability at least until there is a treatment and that was when he became more alive. He said it's difficult for me to get disability because there is no evidence that anything is wrong. I am 20/20 on all vision tests and nothing shows anything. I mentioned the study. He said it's too new to prove anything. It's only research..... ::Scratching head:: He said he would try to help in any way he could... so I handed him the paper my lawyer asked for him to fill out... he said NO. Then proceeded to tell me the lawyer needs to send it to him directly and pay a fee. He said I shouldn't be the one to pay it since the lawyer will take money from me if I win the case. I guess he doesn't realize that $30.00 is chump change compared to the thousands I've spent trying to figure out what's been wrong with me for the past several years?!? The biggest insult was when he suggested I try botox for the issues. Because clearly he can correct an occipital lobe problem with botox.... oh and also fill in my frown lines from all of this disappointment!!
Don't get me wrong, this Dr. usually seems more interested in all of this stuff. Out of all of my Dr.'s he's been the one that I've felt would be the biggest help with setting my mind at ease, but no. In the end he wants me to see the vision therapist again (She is awesome!!) and see if any of her testing machines can give us evidence of a problem.... I hope it does! Oh and when I left... my colorful files were with his nurse being filed away........ :(
Now for today's visit with the migraine specialist. I started my trip to see her with a bunch of rushing. My father, his girlfriend, their kid and my son all tagged along. I needed him for driving support.
Anyways, before she walked in I realized all of the colorful folders I made her were left in my car which was now with my father. When she entered I let her know this info and told her they each contained a study. She proceeded to tell me that someone already sent them to her. (That someone was me, and it wasn't the two main studies that she needed to see).
I let her know the area in the brain where they think they've located the problem. She said they've always known it was there, but with the new imaging they are able to pinpoint it which is good. She seemed surprised when I told her that my symptoms are 24/7.... I've told her this before... every time I visit :)
I told her about my most recent symptom (it's one year old now) and how when I am walking or driving or in a car that anything in my peripheral seems to skip and is missing frames. She called it a deficit and said it isn't easy to treat like a positive phenomenon would like visual snow or afterimages. So... that was bummer, bummer crappy summer right there! That's the kind of news that makes me want to take a long trip off the side of that 6 story building. (Okay, I am kidding, but it wasn't pleasant... she didn't sugar coat it for me and I like sugar coating sometimes.)
So, she suggested I try an epileptic for the positive phenomenon, which I told her I was afraid to do, so she told me the reason I am afraid to do it is because I keep telling myself it will make me worse. I did tell her last time and the time before that a lot of this stuff started after I stopped medicine and started medicine... there is a real reason behind my fear. Anyways, she is just increasing my verapamil since I've been taking a baby dose, so now I will be on 80 mgs every day. We had to watch my blood pressure last time because it's been 90/60. Today for some reason it was like 120/68, which I've never seen before. I can always come up with some irrational fear as to why adding 20 additional mg's of verapamil will cause my blood pressure to plummet so low.... but I guess I have no choice.. I've already taken it so we will see.
There ya have it... my appointments. I am pretty much in the same boat I was before going to both of these, but $150.00 poorer. :)
All kidding aside, I hope I see something positive come from the medication increase and maybe something also will show up on the vision tests.
No comments:
Post a Comment