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Gathering information, pending diagnosis

Posted: Tue Nov 06, 2012 7:13 am
by cubiclecowgirl
Hi everyone,

I just joined the forum and thought I'd introduce myself. I've had a rough year to say the least but it all started the summer of 2011 when my left eye suddenly went blurry, and after about a year's worth of testing by my ophthalmologist (and all the tests coming back as normal) she was starting to think I may have MS. Then my eye got dramatically worse (unable to move the eye side-to-side, headaches, double vision, nausea that landed me in the ER once because it was so bad, and then being off of work for the last 3 months due to all of this) they put me through a bunch of testing and the MRI for my eye showed not only a mass in the muscle behind the eye, but multiple white matter lesions throughout my brain. As far as I know, I haven't had any other symptoms other than my eye being blurry for the past year and a bit so the white matter lesions were a surprise. The doctors don't believe the mass is in any way connected to the lesions.

But at any rate, because they found the lesions on MRI I'm waiting to get in at the MS clinic. I've also had a repeat MRI last week which shows that the mass behind my eye is nearly gone (I've been on prednisone for 9 weeks which has shrunk it considerably but the docs still can't tell me what the mass is exactly and they suspect this is a recurrence from an eye problem I had 8 years ago that they didn't know what that was either, so chances are if they can't get rid of it completely, whatever-it-is will flare up again in the future) and the MRI shows white matter lesions. I work in the MRI clinic so I did get a copy of the images, but haven't gotten the official report from the radiologist. It should be ready today and I'll be heading over there to pick it up and see what he says as far as a comparison to the previous MRI.

So that's my situation so far. I'm worried about whether I'll be diagnosed or not based on the MRI and the blurry vision. Does anyone have experience with this? I'm not sure whether they'd need to track it longer to see if I develop other symptoms before making a diagnosis? or can they diagnose it from the MRI only? So many questions! If any of you have recommendations for books and more information on MS, I'd love to start educating myself more on it. Anything I've read so far just says that the MRI can be used to confirm the diagnosis once symptoms appear, but without having had really any symptoms (and the blurry vision is questionable.. it's just that my ophthalmologist can't think of what else it might be after she's tested me for so many other things) is it possible to still be diagnosed with MS? Or what other diseases could cause those lesions?

So much up in the air! The uncertainty is the worst part right now.

Hoping to get to know you all and thanks for reading this :)

Take care,

Sarah

Re: Gathering information, pending diagnosis

Posted: Tue Nov 06, 2012 5:55 pm
by lyndacarol
Welcome to ThisIsMS, Sarah.

First, take a deep breath. You have had a rough time. We look forward to getting to know you, too.

Next, in answer to your request for book recommendations, I suggest you start your reading with two books: Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD, and I think The Multiple Sclerosis Diet Book by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library. You may find other suggestions in the Reading Nook forum here at ThisIsMS.

Finally, in keeping with my belief that excess insulin plays a major role in MS, I encourage you to eat a healthy diet (a good idea whether or not a person has MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and removing white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

By the way, I was diagnosed with MS based on symptoms and my fourth MRI (my first three MRIs were normal as was an EMG and evoked potential testing).

All the best to you.

Re: Gathering information, pending diagnosis

Posted: Wed Nov 07, 2012 2:23 pm
by want2bike
Many have taken care of this with diet. Roger MacDougalls story is amazing.

http://www.direct-ms.org/rogermcdougall.html