I really expected the next thing I post to be details about IV steroids and really getting to the bottom of my eye issue. But I can't do that. I just got back from seeing the eye doctor and I'm so pissed out right now. Not a little upset or frustrated, but so angry that I could spit. First off, she's an optometrist, not an ophthalmologist. This meant that she was much more interested in fitting me for glasses than figuring out why I can't see. We started talking about my impairment and I told her that my eye has gotten so bad that I can't do anything. I have trouble getting dressed, cooking, and even fun stuff like painting and crocheting. So she offered me an eye patch. I kid you not. I have a blindspot in the middle of my eye, all I see as shades of gray, and her solution is an eye patch (I'm really trying not to curse). I wanted to walk out right that minute. Then she asked me several times if I had diabetes and if I knew the signs of diabetes, and I just kept reiterating that my sugar is fine. Then she put in some drops and sent me out to the waiting room again.
At this point I'm so upset that I'm tearing up and I ask Nilaja to step outside with me while I call Dr. Friedberg. Emily, the office manager, answered and I explained everything that was going on. She got my chart and then started explaining to me what the receptionist had noted the day before and Dr. Friedberg's response to that. I know I don't communicate well, but she got everything all wrong. She wrote something about a headache and Dr. F figured it was the occipital neuralgia (my original diagnosis) and that's why he didn't respond. But that's not what I told her. I tried to explain it all to Emily and she seemed to get where I was coming from. Phew! Unfortunately, Dr. F wasn't there, so I have to wait until tomorrow morning.
I went back in and she took some pictures of my eyes before telling me to come back in a few weeks. Oh, and call her once a week to check in and she gave me her home phone number just in case something new comes up. She also gave me some little grid thing she wanted me to work on (whatever). I have no intention of seeing her ever again.
And I'm angry. So very very angry. And disappointed. And scared. The Prednisone is not helping me and I feel like I'm running out of time on this. I wish all these people could understand what it's like not to be able to see. Even the doctor today could see the permanent damage from the first time, and she had no response. Just that I don't have liver disease, high blood pressure, diabetes, or kidney disease. No, I don't. I have Multiple Sclerosis. I have Optic Neuralgia. And it's taking all my strength not to go to the ER or sleep in the hallway outside of Dr. F's office.
Oh I am just livid for you!! What a waste of your time! Yeah, an optometrist generally isn't as helpful for us. Oh, and Dr. F's receptionist? She should be fired.
ReplyDeleteCall Dr. F first thing tomorrow. If you don't get a call back by noon? Call back every half hour. And if you don't get resolution by the end of the work day, go to the ER.
*hugs*
Hi CHris, I found your blog through Google Alert. (My alert is for Occipital Neuralga, which I have, thanks to my MS.)
ReplyDeleteI can vertainly understand your frustration. What they should have done is refer you to a neuro opthamologist as they would know what to do to help you with you optic neuritis.
Do you see an MS specialist at all? We have a clinic here (two in fact)specificially for MS patients and it's got intgrated care so there are several different types of docs affiliated with the clinic. If anything goes wrong for a patient, they are referred to the doc who handles that area of medicine. (We have a nutritionist, an Internist, an oncologist, a neuro opthomolist, a physiotherapist and so on.) It makes it so much easier to get the care we need in a timely matter.
I am in Canada, btw. I was thinking of starting an MS blog-I have one started, it's just not gone public....I blog regularly about art, as I am an artist, but I wonder if it's helpful to have MS info from my experience out there for others...still thinking on it.
Anyway, nice to meet you and sorry you are a memeber of the crappy disease club.
Welcome to my blog. I don't talk about Occipital Neuralgia much, but you should definitely keep reading and commenting. I've already learned a lot from you! I don't see a MS specialist or visit a MS clinic. I don't know if there's one around here but I'm definitely going to look into it. I really do like my neuro, but I'm starting to feel like there is some sort of disconnect.
ReplyDeleteIf you do open up your MS blog to the public, let me know and I'll put you on my reader.
Hi Chris - I just followed a link from @ConquerMS on Twitter. I live in the UK & have had 3 episodes of optic neuritis. It sucks. It can hurt ( a lot) make you diorientated, zap your energy, make you colour blind, give you bad headaches, mean you can't adjust to different lights & of course means you can't see properly.
ReplyDeleteI don't know anything about the medical system where you are but it seems to me that they are not treating you correctly. You need to see an opthamologist, neurologist & have a regular MS specialist nurse to contact at any time. I think you need to kick ass because it is your health they're messing with.
I'm sorry that you're having such a rough time. For me it did get better each time but it can take many months.
I've also set up an MS blog but not made it public as I want to rework. I'll let you know when it is up. Meanwhile I have a blog at www.wrightstory.blogspot.com if you want to follow. I'll post on there when my MS blog is up & running. I'm also on Twitter: www.twitter.com/wrightstory.
Take care
Kat :-)
Hi Kat and welcome to my blog,
ReplyDeleteAt the time of posting this, there was a definitely lapse in proper protocol and care. I agree completely. Since then, I have had better contact with my neuro and we are on the same page. We tried IV steroids and they made me very sick, so at this point I'm just going to wait it out and hope my vision returns.
Please do let me know when you get your MS blog up.