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Multiple Sclerosis Diagnosis
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TaylorNicole537 posted:
Hello,
My name is Taylor and I am 17 years old.
On May 7th this year, I noticed that the vision in my left eye was weird- the best way that I could describe it was that it was like I looked in the sun for too long and then looked around me and everything was tinted weird (shades of things were off, and I couldn't make out the features on a face 3+ feet away from me). I had a horrible headache that had been there for two weeks on top of that. I went into my pediatrician on May 8th. At this point I had half vision in my left eye- I couldn't see the features on people's faces and colors were distorted. My doctor said that she was going to set up an appointment with an optometrist the next day. By the morning of May 9th, I lost all vision in my left eye and couldn't see the bright lights that the optometrist flashed in my eye. My headache got worse as time went too. My parents would guide me around different areas so that I wouldn't walk into anything or step on one of our dogs.
After some testing, the doctor was able to tell us that he saw that there was swelling on both of my optic nerves. My Mom asked him if I was going to lose the vision in my right eye as well (being totally blind) and if I was going to get my vision back. He said he honestly couldn't answer that question. Seeing as how my vision was decreasing so rapidly, the optometrist scheduled a stat MRI. Two hours later, we got a phone call saying that I had Multiple Sclerosis. I cried because (of all things) I was happy it wasn't something so much worse.
Looking back on things, my parents and I were able to think of some different signs of symptoms that I had showed in the past. My feet were numb for over a month, I had a case of double vision when I had been driving on the interstate, my balance was off, I was constantly tired (my parents even talked about me having mono at one point), and other small things like that. When not aware of the MS diagnosis, you can always chalk those symptoms up to something else: I was tired because I stayed up too late the night before, I am clumsy and walk into things sometimes, I wore high heels(so maybe that's why meet feet were numb)- thoughts like that which made it so we wouldn't question anything wrong-- One wouldn't put all those things together to say something was wrong because they are such tiny things. The day after I was diagnosed with MS, I found different things that could be symptoms, and all of those things fell under the symptom category for MS.
They put me on Gabapentin for my headaches and I am on Copaxone as well. The staff at my hospital has been absolutely amazing. My parents are fabulous and have supported me so much throughout this. Having multiple sclerosis is interesting- there are days when I don't even realize that there is something wrong, and then other days I walk into things. I don't let this slow me down- I still keep my schedule the same as it was before the diagnosis. I just had my first day of college yesterday too!
I think that the best way to deal with this diagnosis is to have a positive outlook on it all. There could be so much worse, and they are doing amazing things with medicines nowadays as well. I hope that I can hear your thoughts and stories too. I am open to talking about MS, and hope to hear from you!
~Tay
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hackwriter responded:
Dear Tay,

You are one amazing young woman, I love how you told your story--one that is so familiar to so many of us. You have described your life and the people in it so well, it's easy to see that you have a strong support system in your family and medical team. Those things are so important.

I could particularly relate to how you recalled some nonspecific symptoms experienced in the past that were easily explained away, but which now carry new significance as being early signs of MS. After I had my first flare at age 41, my neuro sat down with me and asked me to recall all my childhood illnesses and anything weird that had happened around those. What emerged was a series of episodic limping, falling over my feet, and foot drop that appeared after having had pneumonia at age 12 and scarlet fever at age 21. I also suffered from migraines from age 10 to 21. All these things my neuro noted as being MS-related. It was sort of a relief, realizing that a disease caused what I thought were little quirks of my clumsy, eccentric personality.

I wish you good luck in college. No matter what happens, you'll be okay Thanks for sharing your story.

Kim
 
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MrsCRG responded:
Having a good attitude about it helps make it easier to deal with it.
I wasn't dx'd until I was 22. My neuro at the time told me the MRI scans indicated that I had it longer. My 1st year of college is as far back as I can remember some symptoms occurring. I was 17 as well.
I am 30 now and still dealing with symptoms and having a good attitude regardless. I suffer with the fatigue and numbness in my hands and feet. I've graduated from college, gotten married, and have worked in the corporate world. You may have some days where you don't want to do anything no matter what may happen keep living your life. Go on with your dreams and goals. Remember having MS is not the end of the world.
 
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JohnnyOriley responded:
That is a great encouraging story and very familiar. My 31 year old girlfriend was diagnosed the day after Christmas last year. Up until Thanksgiving of last year she had been very very active. A hard worker and great mother. Full of life and happiness. She was admitted to the hospital on 27 December and remained there until Jan 7th. She finally gave in and went to the doctor after her sight was almost completely messed up and could barely walk. Looking back on it after she was released we talked and both of us starting picking apart these little things... "remember when your left eye was crazy" or "remember the "spell" you had" and probably 20 times last summer she made the statement "somethings not right I'm always tired". Like you said each little thing individually is not a concern but looking back on it all of them together should have been. We blamed pinched nerves, tweaked back, mold, and a bunch of other things before getting confirmation that it was MS. To see her 90 percent disabled in the hospital was heart wrenching... but once her steroids kicked in and after talking to her doctor and getting on avonex she is pretty much back to her old self. I really think her positive attitude and outlook on life has helped it to be better than expected. Yes we adjusted a few things in our lives due to the MS but overall her attitude has been amazing and I think that helps so much more.
 
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Cingriff responded:
Hey Tay -

You are an inspiration to people with MS. I am 45 and was just recently diagnosed with MS (about 5 mos ago). My father was diagnosed with MS when he was 50, but has since passed from a heart attack... about 7 years ago.

My symptoms included what I was told was Bells Paulsey on the left side of my face which occured back in August of 2012. I had a reoccurence but on the right side of my face in March of 2013. My neurologist found this uncommom and ordered an MRI which showed 5 lesions on my brain (2 med and 3 small). He also orderd a cervial spine MRI which showed 7 small lesions. I started Copaxone also and things are going good for me and I have not missed any work.

I have a very positive attitude also and I know that certainly helps. Things could be worse at least we have a treatable disease. I work for Hospice and see a lot of terminal diagnoses.

Hope everything goes well at college and I'm sure with your positive attitude it will.

Cingriff


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