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Old 01-27-2010, 09:18 AM #1
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Confused Lots of questions and concerns

So Friday I went to the eye doctor to find out that the lag or sticking when my eyelid of my right eye opens is a sign of MS. I have had the eyelid thing now for about 2 weeks. About 4 weeks ago I was getting pins & needles in my left pinky and ring finger, that would come and go. Now it seems to have subsided. Last summer 2009, I had an episode of where my right fingers would just sparatically start moving like I was playing the piano. It would last for about a minute or two and then stop. This happened off and on for about 2 weeks. I had put all of these things aside as just a freak of nature and never worried about it cause, I was tired and your body reacts differently when you are tired. Since none of the episodes lasted for more than 2 weeks, I never worried about any of them. now with the eyelid (not sure how to explain it) it wants to open but seems to get stuck for a second or two, then the muscle seems to release and the lid folds back into my eye as it should. Happens more often when I have raised my eyebrows it seems. I would say it happens 2 out of 5 times my eye blinks. Anyway, I have an appointment on Feb 9th to see my PCP and find out if she is concerned. Let me tell you, I am. Do these seem like MS symptoms or did my eye doctor get me concerned for nothing? Thank you all for your guidance, since I have no idea what I am getting into.

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"Worried" EdieAnne
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Old 01-27-2010, 09:47 AM #2
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Welcome to NeuroTalk, EdieAnne.

Well, Many an Opthomologist has predicted MS from an eye exam. Your PCP will most likely and should get you to a Neurologist, preferrably one who specializes in MS, ASAP, for all the usual neuro tests.

Stick around and let us know how that all turns out, please. Nice to have you with us.
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Old 01-27-2010, 09:59 AM #3
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Hello and Welcome! I am sorry you found the need to seek us out, but I am happy we can help.

The eye MD probably listed MS as one of many possible causes, and is hoping you will have your PCP investigate further. As I tell so many, there are more than 100 diseases that can mimic MS. its a disease that ends up being diagnosed after 90% of those are ruled out. Some are really easy to rule out with a simple blood test. Vitamin deficiency, or Lyme, Lupus and the likes. Be prepared to roll up your sleeve. If those show normal limits, your MD will keep pushing to find more answers.

You may end up having an MRI. That is one of the more definitive tests to prove is lesions exist in your brain. Other diseses can cause lesions too, so dont panic if you have them. MS has a typical pattern close to the ventricles.

an MS diagnosis is more of a long haul diagnosis. its a process rather than a quick trip to an MD. So, hang in there! Ask plenty of questions. NEVER let an MD dismiss you if you feel that your concerns are not being addressed. There must be a reason why your eye lid is sticking, and your fingers are numb. Dont quit till you get your answers.

Please let us know what your MD says. I am thinking its gonna be a round of blood tests right out of the gate. Keep us updated.
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Old 01-27-2010, 10:07 AM #4
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Hi EdieAnne and welcome to NeuroTalk! Sally and Dej have given you great advice so I'll just agree with them.

My MS sx started out as visual, too. As you'll see as you read the posts here on the MS forum MS is not the same for two people. We all have different sx and issues. But we all can empathize and understand what the others are experiencing.

Let us know what your doctor discovers. Sorry you're having these issues but glad you found this site. It's been a lifesaver for me!
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Old 01-27-2010, 10:08 AM #5
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Well, I want to thank you both for your quick replies. I believe you are right in saying that this could be a long process. I have PD in my family but not MS. I have been concerned about PD for years. When I have the episode of involantary finger movement, that was the first thing that came to mind. I will certainly let you know what happens. It is great to have a support group that is on the same level as me... not the high jargon doctors all the time. Thanks again and I will keep you updated. Also is there a place to put symptoms and dates as to when the occur so i can try to keep track?
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Old 01-27-2010, 10:14 AM #6
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Quote:
Originally Posted by EdieAnne View Post
Also is there a place to put symptoms and dates as to when the occur so i can try to keep track?
Here's what I did......I started a Word document and saved it to my desktop. Titled it "Daily MS Log". Each day (or nearly each day) I type in any sx I may be having, or any medications I might be taking (MS related or not) and how I'm feeling. If I'm having a strange or new sx I put it in my log. No way would I ever be able to remember the day to day things that occur with this disease if I didn't write it down. I have trouble with numbness in my right hand (I'm right-handed) so I find that keeping this log on the computer is easiest. When I go to the Neuro I just print out my online diary and have all the info I need.
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Old 01-27-2010, 11:02 AM #7
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Quote:
Originally Posted by EdieAnne View Post
Last summer 2009, I had an episode of where my right fingers would just sparatically start moving like I was playing the piano. It would last for about a minute or two and then stop. This happened off and on for about 2 weeks.

Thanks,
"Worried" EdieAnne
This symptom, as well as optic neuritis, were the first two symptoms I had. Within a month my leg was dragging, so I was an easy diagnosis.

This is the first time I have seen someone else with the finger moving problem. It surprised me when I read it!

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Old 01-27-2010, 02:30 PM #8
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My first experience with Optic Neuritis (5 months after my hip and thigh went numb) was my first real clue that I had MS. (had a doctor blow me off on the numb thigh)

When I had ON, I had a weird problem with my eyelid, it seemed like it didnt want to close all the way. Not only did my eye hurt like crazy, and I had the big blind spot, but when I closed my eye, I could still see thru a little crack where the eyelid didnt close all the way.

That was a pain, my eye felt dry all the time and I had to use eyedrops occasionally.

Right now my biggest visual problem from the MS is the stupid eyelid twitching....that drives me bananas!
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Old 01-27-2010, 03:25 PM #9
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*edit*

Most of us keep a journal. This way when we go to an MD we whip out our journal and can easily look things up, instead of relying on a bad memory. Keep track of emotional stuff too. It feels good sometimes to let it out, even if only on paper.
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Last edited by Chemar; 01-27-2010 at 04:54 PM. Reason: NeuroTalk guidelines
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Old 01-31-2010, 02:12 PM #10
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Post update

So since my last post, I spoke with my mother about my lastest discovery. When I spoke to my doctor she told me to have prepared for our appointment, if anyone in my family had MS (nope) and to try to remember all the quirk things I have brushed off as something else in the past that may be a sign of something. When talking to my mom, she said that MS was not part of our family history, but that Parkinson's and Neuropothy are and quite prominent I guess. Can these symptoms get confused? My eyelid seems to have stopped with its' sticking and haven't had it twitch recently either. But I must say that each of the episodes I have had have only lasted for about 2 weeks or so. I hope I can get to the bottom of this... They also put me on a cancelation list to be seen at the doctors cause I think they are concerned too!

Edie
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