The Good: I spoke to Dr. F this morning and he was very sympathetic and apologetic. I guess the Optometrist shared more with him than she did with us, and while I felt she was in left field, she wasn't. He talked about my options and recommended I do the IV steroids for 3 days. I agreed and thanked him for listening and taking such good care of me. He also told me that he received the reports from Maine and was really surprised by them.
The Bad: Despite all my anxiety and trying to get immediate treatment, I can't start the IV infusion until next week. It needs to be done on 3 consecutive days (outpatient) and the clinic is only open Monday through Friday. I'm set for Monday at 11:30 am. I think I'll make it until then, but I am nervous. My vision is much worse than I thought. I was out today running a few errands and it was really difficult. My depth perception is gone and everything I see is weird and shadowy. I really wish I could have started the treatment today, but I can't, so I'm just going to chill at home for the next few days.
The Ugly: There were spots on my MRI in 2005. There were only 2, but they were noted on the report. But no one said anything. No one thought it meant anything. They write in their reports that I already had numbness, tingling, and pain, plus these 2 spots, but they all decided that it wouldn't change or spread. I'm so angry. If I'd known about it, I would have done a follow up 6 months later. I would have continued to pursue it. But I was told that nothing was there and that I'd be fine. But I'm not. I now have 10 spots, I walk with a cane, I randomly piss myself, and now I can't see. I am currently gathering all the reports and films (I have the 2005 MRI right next to me), I'm going to give it to the radiologist who read my most recent MRI and see what he says. And then I'm consulting an attorney. (If you know an attorney, especially one that does free consultations, please forward that info to me.)
{exhale}
Due to my current situation, I need some help:
Until my eye resolves, I need a little help getting around. I don't know the times of the Tuesday and Wednesday infusions, but I will need help getting there and back. They are taking place at Herrick on Dwight in Berkeley and the entire procedure should take an hour. I don't necessarily need someone with a car, just someone who can ride the bus with me, make sure I get the right stop, and walk me back to my apartment. If you are interested in helping out, please comment below, email me, or send me a message on Facebook. I already checked with the infusion folks and they said that it's fine to bring a friend to keep me calm throughout the procedure. It doesn't need to be the same person each day and if you have some time to give on Tuesday or Wednesday and would like to be "on call," please let me know with the times that you are available.
Bring some butterscotch candies or mints - the solumedrol gives a wicked (but short-lived) taste in your mouth :(
ReplyDeleteOh definitely. I found this: http://ms.about.com/od/treatments/a/medrol_tips.htm and I think I'm going to carry that info with me when I go.
ReplyDeleteThanks.
Hi Chris,
ReplyDeleteYou may have trouble sleeping with steriods. If so, let your doc know and he can give you some sleeping pills.
I am sorry you have to wait over the weekend-that's stressful when your vision is going like that. THe good news is most folks have a quick recovery once they do the treatment. Let's hope that happens in your case.
While I have not had ON, I have had a 4 day infusion to try and treat my MS and really, you won't feel anything is off while you have it, save for the "metal mouth" you might get. My coping skill is to drink and eat stuff that is strongly flavoured. (I have metal mouth almost all the time now from my meds.)
If you have trouble finding someone to go with you to the appointments, you might try and give your local MS chapter a call and see if they know of anyone who might be able to help you. I've found our chapter here so helpful for a variety of things.
I'm so glad you got in touch with Dr. F, and that he is willing to jump on things to give a little more aggressive treatment. That's the sign of a good doc. It's a relief. Hang in there until Monday. Once you start the treatment, you should start noticing improvement fairly quickly.
ReplyDelete(I didn't notice much of a bad taste in my mouth when I had my two sets of infusions, but butterscotch is always good :) I did notice that I didn't sleep much for a while, and my mood was rather erratic. I also had a rash over my chest and shoulders, but after the infusions were done, it just took a couple of days for it to go away.)
Devil's Advocate: As far as a malpractice suit goes, I'm not sure. If you can get a free consultation, it won't hurt. Thing is, people can have spots in their brain, without it being anything. If it's just a couple, depending on the size and location, sometimes it can be passed off as nothing. But the attending physician should have read the MRIs in addition to the radiologist, and it's possible both of them didn't think much of it. Like I said, I'm playing Devil's Advocate. If I were you, I'd probably pursue it, too.
I wish I could help with what you need, but I'm too far. I'm sure you'll find some folks to help though.
@Lelainia: Thanks for the suggestions. I now have a prescription for Ativan that I'm taking to help me sleep. I'm hoping to continue that (minus the melatonin) and if it isn't strong enough then I'll go back for Ambien. I have had a few responses on Facebook from people willing to chaperone me, but contacting the local NMSS chapter is a really good idea.
ReplyDelete@tidesong: I don't think they could have diagnosed MS at that time, I know that. But I think it would have been good practice to let me know that the MRI wasn't "normal." And they should have recommended a follow-up MRI a few months to a year later to make sure that they weren't anything. I just don't understand how they can document all the neurological symptoms at that time and have it equal nothing and suggest no follow-ups. Even in the report, they say my vision may come back or it may not, but it won't spread. It's just not right. We'll see once I get another opinion on the films.
Hey, let me know the times. I should be able to help out on one of those days.
ReplyDeleteLatonya
Latonya, I've had a bunch of people volunteer to help. I'll let you know if that changes and I still need help. It was good to see you today and thanks again for the ride on Wednesday.
ReplyDelete