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.

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. :hug::hug:

With love, Erika

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?

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.

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.

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.

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 :(

You and all the other MS patients out there. :rolleyes: 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.

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.

That is not unusual. It may just mean that your MS is either not
active or you haven't formed any cervical lesions,yet.

So if this one brain lesion is causing all of this, then I hate to see the pain that comes with other lesions...

When I was diagnosed over ten years ago there were only a few tiny spots on my brain, then later they found a tiny cervical lesion. My MS specialist said that he had seen people with one tiny symptom and their brain MRI looked like popped corn! So lesions do not always correlate with symptoms. My many early symptoms have mostly calmed down now but my MS fatigue has stayed with me. You'll get through this, and we all know how stressful it is in the beginning.

In the beginning for me I had 4 lesions in my brain and no where else. All other tests came back normal including the spinal. Over the years I would get more brain lesions, then less. My relapse in Oct of 2011 MRI showed no active lesions, but boy was I in a major relapse. You have to go by what your body is telling you, not so much those MRI's. I have a lot of lower body problems, yet MRI's show no lesions on my spine. Neuro says just because they don't show them, doesn't mean they are not there. MS is so hard to dx, its not a 1,2,3 your dx. A lot of us here took years of yes you have and then no you don't right back to yes you do. Its like a merri go round. I was dx before there were any abc's, so I was treated by symptoms. If your neuro can at least do that in the meantime for you, go for it, until you can get into the MS clinic.

Ok so I found out today that I'm going back to the doctor this coming up Monday. Apparently she had talked to the main doctor in the MS Clinic, and said that she wants me to see her so we can discuss some options like therapy and what not. Reason being is that the only available appointment for the MS Clinic is in Feburary, and I've already complained to them about when they made the Dec 23rd appointment. So I'm going in on this coming Monday - not really sure what to expect at this point, I hope it won't be a wasted trip, because I had to have my mom talk to them because I didn't understand why I was going back to the doctor I've been seeing.

Just hoping for the best, but I just don't know what to think right now.

I feel your frustrations cause I am going through much the same thing. I had MRIs done in April and had one lesion in my brain and nothing on the spine/neck. Symptoms are all there, one lesion, blood work all comes back good (meaning mimicers are ruled out). Visual evoked potential came back good. Haven't had a lumbar puncture done yet; oddly hoping they do it at my next appointment on Tuesday and it shows something! I haven't gotten a diagnosis yet. Last appointment (end of August) the neurologist said my physical exam wasn't bad, but definitely seems some nerve damage/delay in my left leg.

I'm so sick of all the doctor visits and testing as well. At this point kind of wish they'd just find something and give me an answer already. It's been 9 months of pain, doctors, tests and no answers. :(

So, I feel your frustration and hope things get rolling for you and you can find a better state of 'normal' soon. :hug:

Wishing you some answers too Juniebear. It can be so frustrating at times.

With love, Erika

Hey there skywalker

:hug:

Patience is the name of the game when it comes to MS. That's one of the main things that I have learned throughout the years.

Patience with the doctors
Patience with the flares
patience with the symptoms that don't seem to go away
Patience with yourself

MS is so complicated.

Especially in the first year of diagnosis.

I felt so lost and in the dark. I didn't understand anything that was happening.

You grow to learn and understand a lil bit more EVERYDAY.

I would be super elated for the news you received in the MRI findings.

In my opinion, it seems your body is doing the best it can to heal the damage that was done previously, which is a super great thing.

I agree with the others.. I find more information and comfort from this site than when I see doctors (even though I have been without a real doctor since May).

I felt compelled to write this because I, like you, was diagnosed at a relatively young age. I had no advice or direction until I found neurotalk. We're family round these parts :D

Hang in there.. It's hard, but in a year from now this will all make so much more sense. always remember...

*Patience*