Introducing me, I guess :)

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Introducing me, I guess :)

Postby randilynn » Tue Feb 14, 2012 1:44 am

Hi everyone :)

My name is Randi; I'm 20, and I'm preparing myself for a clinical diagnosis sometime within the next few months.

I recently lost vision in my left eye (and by 'lost' I mean it seemed like i was looking through fogged up glass, through one eye) and following a game of hot-potato with different doctors was told I had Optic Neuritis. That, coupled with fatigue and (for some odd reason) a very painfully sore sensation in my arms like the day after being vaccinated, is pretty close to proof that I'll be diagnosed with RRMS.

I have an MRI coming up in May. I don't really know what else to say, other than that I'm scared and uncertain- my partner and my family keep telling me to stop researching things online because it's stressing me out more, but I guess I'm in denial, I keep thinking maybe I'll find a hail mary that will fix it, or make it not happen to me, or something to just make it all stop.

I guess I just need people to talk (vent) to, without feeling like I'm burdening those close to me with constant reminders of how utterly terrified I am.

Also I ramble,

In other news, Happy Valentines day! :X
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Re: Introducing me, I guess :)

Postby DougL » Tue Feb 14, 2012 5:25 am

Hi Randi. Welcome to TIMS. Sorry for what you are going thru. You will find many people that have experienced what you are feeling now and can relate. Its a great place to vent and ramble.
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Re: Introducing me, I guess :)

Postby lyndacarol » Tue Feb 14, 2012 6:19 pm

Welcome, Randi; you have found a group of understanding friends. We listened well to vents; we are willing to share our experiences and answer any questions that we can.
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Re: Introducing me, I guess :)

Postby vcpete38 » Tue Feb 14, 2012 7:01 pm

Hi Randi, I'm in the same boat with optic neuritis. I was admitted to Duke University Hospital for IV steroid treatments a week ago and my vision is coming back. Mine kind of looked like a fogged up glass with the middle of the picture almost missing. The middle part is back, but still not 100% clear and a lot dimmer than the other eye. I had a brain and spine MRI, lumbar puncture (spinal tap) and blood work. My next appointment isn't until 3/13 because my spinal fluid was sent to the Mayo Clinic for testing. I'm having some weird feeling in my arms too, but can't totally describe it. It's not totally numb or tingly and I can feel everything. I want to say it's fatigue but I'm not sure. I also wonder if I'm imagining some of it since the neurologist is leaning toward a diagnosis of RRMS.

If you don't mind me asking, why will it be so long until you get your MRI? I thought a month was a long time and I'm now just waiting for results from the other tests. Anyway, I hope things get better for you soon. I totally know what you're going through and it's so scary. Is your vision getting any better? I've heard that it can take months for it to recover fully (or close to fully), even with the steroid treatments. You may want to look into those treatments if your vision is still really bad.

I'll be thinking good thoughts for you, and hang in there.

Vicki
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Re: Introducing me, I guess :)

Postby randilynn » Wed Feb 15, 2012 12:01 am

Hi Vicki :)

Regarding the time for an MRI; because I live in Canada the healthcare is free and most of the medications are covered, the only downside is due to a shortage of doctors and long waiting lists the average time for waiting for an MRI varies between 1-6 months. I've gotten blood tests to rule other things out but I'm still waiting on the results. As for my vision, the pain (which was excruciating for the first two weeks) is gone completely, however my vision has not returned and the fogginess seems to get much worse when I take warm baths and/or I'm overtired. Have you noticed any change when you're very warm? I've heard that heat can occasionally exacerbate symptoms.

When do you get your spinal fluid results back, and do you know what they're looking for/how they test it? None of my doctors has mentioned that as being one of the tests so should I request one? This is all really new to me as I'm sure it is for you so I don't really know what steps I should be taking or what questions to ask...
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Re: Introducing me, I guess :)

Postby want2bike » Wed Feb 15, 2012 7:32 am

Check out the diet section. Doctors do not necessarily prescribe the best treatment. It is up to you to do what is best for you. Many of the drugs they will prescribe have very bad side effects and studies show they do no good. Get all the information so you can make a wise choice as to they way you want to go.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://articles.mercola.com/sites/artic ... _DNL_art_1
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