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not ms?

by roncart, Jun 26, 2009 11:04AM
Tags: lesions, brain
h, i just wanted to ask about a repeat mri that did not change in 2 years, I have numerous lesions in the area of the brain that are consistent of ms. I went to a new neurologist because my symptoms were worse. He wanted new mris which I had. the report on the brain said the lesions are still there but they feel the disease is stable.(I guess that means there are no new lesions) Do you think that means he will say it is not ms because the brain mri did not change in 2 years?...roncart
Member Comments (7)

by goofysmom1, Jun 26, 2009 11:27AM
To: roncart
I am no expert, but I think I have read here on the forum that a stable MRI is what they would like to see in a patient with MS.  Have you been diagnosed with MS?  

Hopefully others with chime in here for you.

Chrisy
undx'd

by roncart, Jun 26, 2009 11:37AM
To: goofysmom1
I am in limboland. I went to this new neurologist because the first one I went to said he did not think I had ms because at that time I did not have that many symptoms,just a positive brain mri. That was last year. In the meantime I have gotten worse so I went to the new neurologist. He was surprised that the first one said it was not ms. all he did so far was give me zanaflex for the muscle spasms and told me to have new mris and then bring the films with me when I see him again in Aug. I had the report sent to me and the brain has not changed so I was wondering if that meant it is not ms..thanks for responding, roncart

by Fluffysmom, Jun 26, 2009 01:56PM
To: roncart
In my experience, a brain MRI that hasn't changed is a good sign.  Remember, though, if you do indeed have MS, there can be changes that haven't shown up.

If the new neurologist was surprised that the first one said it was not MS, I would assume that he was considering the possibility, and is taking the wait and see approach; see if there are changes, see if neuro testing shows changes, see if other possibilities have been ruled out.

Of course, this is just my guess from the information in this post.  I'm in limboland, too, and my latest MRI reports say that there have been no changes, even though they were done on a  3T as opposed to the previous 1.5T MRIs.  

I'm looking forward to seeing my new neurologist (in September!)  to see what his impression is of my MRIs, history, etc.  Remember, the opinion of a neurologist is not always the same as that of the radiologist that reads our MRIs.

I'm trying to remain calm and not expect to much while waiting for my appointment.  Not always easy to do, I know, but I hope that the time until your appt. passes quickly without too many annoying symptoms or worries.

Take care,

Kathy

by Heather3418, Jun 26, 2009 05:12PM
To: roncart
This statement doesn't mean you have MS, but I thought I would post it anyway.

On my first MRI I showed five lesions in the brain and one in the spinal cord.  For the next five years, I showed no changes on any MRI's.  These tests were done on a .7T machine.  Pretty weak.  Even though I had a diagnosis of MS from my first visit, I was not on any DMD at the time.

I feel I had many attacks during that five year period but they never showed any change.
At the end of five years, my MRI increased to 7 lesions in the brain, one in the spinal cord.

Two years ago, my brain MRI showed 23 (some were very small lesions, including my older lesions that measure 5mm-6mm) lesions on MRI and the spinal lesion showing improvement.  None of these lesions showed enhancement after the injection of contrast dye, so that means that they were older than probably 3-4 months.

Very strange isn't it?  My latest MRI was done on a 3T, so I truly believe that it was the strength of the machine that finally showed what had happening through those years that other MRI machines never picked up.

Mind you, all along over this past decade, I have had relapses, but no MRI was ever done when I was in a relapse, as a matter of fact.

There are many people on this Forum diagnosed and undiagnosed that have finally shown lesions when done on a 3T machine.  Lesions that did not enhance, but I believe showed because of the higher magnification that were missed before.  Keep in mind that some of our undiagnosed members have Neuro's that are lesion counters and the Neuro's say they don't have enough lesions or don't look "typical for MS" lesions.

If you show ONE lesion, that's one lesion too many and should be explained by the Neuro no matter what.  If all other testing for MS mimics have been ruled out, shouldn't the doctor's call that an MS lesion?  I believe so.

It's never the AMOUNT of lesions, it's the location of the lesions that seems to make the difference in what symptoms we have. (My opinion) One lesion or twenty; if there are in a very sensitive area, one lesion can cause alot of problems for the patient.

All the best,
Heather





by Sarahsmom46, Jun 26, 2009 06:24PM
To: roncart
Ditto to what Heather just posted.  

I will relay to you what my MS neuro told me at my first or second visit, can't remember which one it was.  When I asked about there being no new lesions during the follow-up MRIs he said "some people get new lesions for several months and some don't get lesions for several years."  He said no new lesions is not an indicator, at least to him, that nothing is going on in the brain or spinal chord.  He also said that some people will have an MRI that shows some lesions have "disappeared".

So, I hope this little bit of info helps you in some way.  Don't be discouraged that these stable MRIs will result in you not getting diagnosed.  MS is still a clinical diagnosis and an educated and experienced neurologist will not disregard your worsening of symptoms especially if he/she seed you during a flare and sees changes in your exam.  

Hang in there and keep moving forward with this diagnosis.  

One question...How is the Zanaflex working for your spasms?

-Julie

by roncart, Jun 27, 2009 04:20PM
To: sarahsmom46
thanks for the reply. as far as the zanaflex goes I think it has helped a good deal. What I think though that helped more than anything was going off those darn cholestrol pills. they were wrecking havoc on my muscles. Once I stopped them the spasms decreased significantly. Now the zanaflex helps alot. I am supposed to take it during the day also but as it is I am in a state of tiredness that is undescribable. If I took those pills during the day I do not think that I would be able to make it out of bed. I know that most of you know what I am talking about. Besides I can handle the cramping during the day. It was not being able to get any rest at night due to those spasms that was killing me. I thank God all the time that they have lessened. Take care.... Carol

by Sarahsmom46, Jun 27, 2009 06:18PM
To: Carol
I started zanaflex for exactly the same reason i.e., could not get sleep at night because of the spasms waking me up every couple of hours.  My doctor had me on 3 times a day, but there was no way I could do that.  Now he said just take at night and that has been the best solution.  

Be careful about getting dizzy and lightheaded from it though because I feel I am a high fall risk once it starts to kick in.

I hope it continues to work for you and me too.  Its nice to have a drug that can really help us.

Julie
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