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Old 09-23-2013, 12:53 PM #1
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Default Results from Tests Are In

The two MRIs that were done on my neck and upper back, the spinal tap and the blood work were normal. The brain MRI that was done in March of this year was the only thing that showed that I had MS along with my story. I'm not sure what to think now, because I'm confused. How can the other two MRIs and the spinal tap not show anything but yet the brain MRI that was done back in March that was said then I had MS, still holds true now?! And I went through all of these months and tests esp that darn spinal tap?

Then to make matters worse, my follow up appt is December 23rd!!!

I am just angry right now.
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Old 09-23-2013, 01:25 PM #2
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I'm not sure why you are angry. Isn't this good news to get?

Your spine is clear of lesions and the spinal tap seems to indicate that there is little/nothing active with respect to inflammation right now.

It iseems that not everything shows up all of the time on these tests. Even some brain lesions that once showed up strongly on an MRI will fade over time.
I have a rather large one that has faded in and out over the years on MRI scans. Sometimes it is really bright, especially with contrast, and at other times, one really has to look for it...yet the MRI doesn't necessarily correlate with how the body is doing symptom wise.

The waiting for follow ups can truly be a frustrating time, but then again (at least in my experience), they are nothing to plan your life around or await with bated breath. The test results and what they mean are reviewed, which is stuff you already usually know, and treatment or therapy options are offered.

To be honest, I get more support from coming here, than by going to the neuro.

Hoping that you cheer up and see the good news in your test results.

With love, Erika
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Old 09-23-2013, 02:08 PM #3
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The only thing I'm really upset about is the waiting time is now extended to December 23rd...three months out. My questions now are what to do in the meantime? What to do if I start hurting bad again? If the doctor thinks I might have MS, then why not go ahead and put me in the main MS Center?
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Old 09-23-2013, 02:13 PM #4
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I think you need to be asking your doctors these questions. They work for you. If they aren't answering your questions then it's time to look for a different doctor. Get a second opinion. Take whatever records you have so far and get another doctor to review them and see what he says.
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Old 09-23-2013, 04:59 PM #5
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My doc called me back, and is increasing my gabapentin, and also going to transfer me to the main MS Clinic there...so I'll find out when I go there tomorrow.
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Old 09-23-2013, 05:24 PM #6
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that's at least good news. you're working at being a good advocate for yourself.
it's a good sign that your dr listened and is responsive.

the folks here have good advice.
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Old 09-24-2013, 12:11 AM #7
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I'm just tired of going from doctor to doctor! I never knew this could be so draining by just that along with the MS pain. I'm just tired of all this
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Old 09-24-2013, 08:01 AM #8
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You and all the other MS patients out there. It's a game of eliminating certain conditions and finally ending up with MS. It's tiring but we all want to know what's really wrong, don't we? I hope the MS Clinic can shed some light on this and find out something certain for you.
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Old 09-24-2013, 06:42 PM #9
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What I don't understand is the brain MRI with the one big white lesion and the pain are the only things right now that show that I have MS.

The neck MRI, the upper back MRI, the spinal tap and all the blood work shows all normal.

The week before I had the spinal tap was the first time after I stopped Rebif months ago that I had another MS hug from my lower back, around my waist and down my legs.
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Old 09-24-2013, 07:15 PM #10
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That is not unusual. It may just mean that your MS is either not
active or you haven't formed any cervical lesions,yet.
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