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Old 12-09-2012, 11:19 PM #1
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Default On the road to a diagnosis

Hello,

I'm new to this forum, and I would like to share my story. I am a 20 year old female who had her first symptom in December of 2011. I initially noticed my vision dim in my right eye. I went to see an ophthalmologist who just shrugged off my symptoms after a 1.5 MRI scan came back normal. I also noticed increased fatigue as well but just shrugged it off because I just had a baby October of 2011. I went to my family practitioner and explained what was going on. He was very concerned and set me up for an appointment to see an neuro ophthalmologist nearly 4 hours away.

I have been to see the neuro ophthalmologist multiple times this year. I've had multiple eye tests. A lumbar puncture that came back negative. A VEP that came back normal but a second one that shows my light sense is behind. In this time my vision was mostly good in the summer (although I never fully regained my sight from the dim vision) However, In October my vision started getting extremely blurry to the point where I have had to order new glasses. My Neuro ophthalmologist said my vision did improve some since then but a whole lot.

I have experienced new symptoms in this time frame like muscle aches in my legs every few weeks to months after normal activity. My right leg also feels a lot heavier and weaker. I have tingling in my right hand and numbness. (I might as well mention I have 2 members in my family who have been diagnosed with multiple sclerosis). I also tend to forget what I'm doing a few times a day and have a harder time remembering certain things. My doctor decided to send me to another Neuro ophthalmologist who specializes in Multiple Sclerosis. I will have a 3T MRI done and will undergo some testing in diagnosing multiple sclerosis. What do you all think of whats going on with me? Does it sound like MS? What do you think of my symptoms? Is it possible for lesions not to show up on an MRI if I just initially had my first "flare"? What should I expect at my first visit with my MS doctor?
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Old 12-10-2012, 12:22 PM #2
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Welcome to NeuroTalk Ashley..

Sheesh, soooo young. I guess I had it in my early 20s, but, didn't know it yet.

I hope you get the answers you need, so you know what you're fighting. It sounds like your chances of the DX being MS is about 90%.

Stay with us and let us know how it goes.
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Old 12-10-2012, 01:14 PM #3
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Hi, Ashley. Your symptoms do sound sort of MS-like, but as you probably know there are still other diseases that they'll probably want to rule out. Your family doctor sounds like he's got his head screwed on right.

I was diagnosed by a neuro ophthalmologist, and like you, my spinal tap was clear. From what I understand my MRI w/contrast was typical of MS.

The NeuroTalk/Multiple Sclerosis forum is a wonderful place. There is plenty of good info, and loads of hugs and support. I'm glad you found us.
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Old 12-10-2012, 03:40 PM #4
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hello and welcome to NT,
your story does sound suspicious for MS. while an opthalmologist can dx MS you might want to get an opinion from an MS specialist neuro.

if you do have MS and you're having con't sx's (symptoms) and eyesight loss you mightf need some medication to try and stall some of any progression you have.

now, i'm not a dr and can't say what's wrong. but anything serious in my book could benefit from a 2nd opinion.

start saving copies of your test results and medical records so if you see someone new they will have the info.

let us know how you are.
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Old 12-10-2012, 05:13 PM #5
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Thank you all for your kind words. It means a lot to have love and support from people who have/are experiencing similar things.
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Old 12-10-2012, 09:28 PM #6
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Keep a symptom journal with dates of onset & remission-but try not to obsess...try to live your life!!! List your questions for your appointments-makes it easier on both you & the doc.
A3 tesla MRI is very sensitive-a good thing. Are you getting contrast injected during your MRI?
It can be a long journey to finally discover what is going on-some of us went years before getting an answer. Patience is in order...
Keep us up to date, do your research, but most of all LIVE YOUR LIFE the best you can...
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Last edited by Debbie D; 12-10-2012 at 09:29 PM. Reason: Typo
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Old 12-14-2012, 11:01 PM #7
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I go Tuesday for my MRI and Thursday for my appointment with my MS doctor.
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Old 12-15-2012, 02:49 PM #8
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Great, let us know how it goes.
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Old 12-15-2012, 10:21 PM #9
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Quote:
Originally Posted by ashleydee09 View Post
I go Tuesday for my MRI and Thursday for my appointment with my MS doctor.
Welcome, and glad you found us ashleydee Good luck with the up coming tests.
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05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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