Question - trying to get answers....

[msimpson45]

Here is my latest MRI from the beginning of this week...Is there a physician on here who can look it over and let me know what they think? Thanks. I've been in limbo for a long time!
MRI of 6/14

Examination: MRI OF THE BRAIN WITHOUT AND WITH CONTRAST

Clinical Information: Multiple sclerosis. Comparison is made to previous examination 11/24/2009 from Capital Imaging.

Technical Factors: MRI of the brain was performed according to routine department protocal. This included sagittal T1, axial T2 and axial FLAIR, axial diffusion, pre and post contrast axial and post contrast coronal sequences. Contrast agent 15 ml of Magnevisit.

Findings: There are about 30 or so perventricular and mostly subcortical white matter changes in the frontoparietal regions. There is no significant change compared with the prior examination allowing for significant differences in the scanner technique/acquisition parameters. There is a small focus of enhancement in the left parietal subcoritcal white matter measuring 4 mm corresponding to an enhancing plaque.

There is mild mucosal thickening of the maxillary sinuses.

Impression: There are numerous, about 30 or so, mostly subcortical white matter changes and multiple perventricular white matter changes. There is one plaque that enhances in the left parietal region posteriorly and superiorly. Aside from the enhancing plaque there are no other changes compared with the prior study.

MY QUESTION IS...DOES THIS MEAN THAT THE DIAGNOSIS IS MS OR WHAT COULD IT BE? Thanks so much! Any help would be so appreciated.

[Shashi]

Possibly, but not necessarily. Unfortunately white matter changes have to exhibit particular characteristics to be classified as MS lesions, and there are other conditions (high blood pressure, aging, etc.) which can also cause white matter lesions. And the one enhancing lesion isn't really in an area typical to MS.

You really need to talk with your doctor about this. When is your follow-up appointment?

Hugs,

Lisa

[msimpson45]

Follow up appt. is August. I'm sure he'll call me before then and tell me everything was fine with the MRI because that's what usually happens. Never a straight answer.

[jazzgirl]

Hasn't the doctor talked to you yet? We are not doctors here, but from reading your report it looks like you are VERY suspicious for multiple sclerosis.

Obviously, the MRI is NOT normal, so I wouldn't wait until August. If this guy is not stepping up to help you, I'm afraid to tell you that you may have to look for someone else. After all, doctors exist for a reason, and if this one is not doing his job, then he needs to go!

Please keep us posted, and good luck to you!

[msimpson45]

I have changed doctors numerous times. I had surgery in 2007 and after that I had problem with word recall. The surgeon sent me for a CT scan which turned up a couple of issues then I had an MRI and found lesions.

The first neurologist only did the run of tests in the office and sent me on my way. Then I did some research and found a neurologist who seemed interested at first, but then trickled off to nothing. During the time I saw him he did do a spinal tap which he said that he could not rule out MS yet. That was the first time I heard anything mentioned about MS. But then he strung me along for almost 2 years not diagnosing me with anything but doing MRI's every 3-4 months. Then sent me to a partner in his practice for help with my migraines.

I finally got fed up and started seeing another neurologist and I told him that I'm tired of being jerked around and need some answers. Another MRI revealed a few more lesions and he sent me to a sleep study and then I felt blown off. A couple of months ago I called him up and I told him that I needed answers and he was doing nothing to help me and why hasn't anyone ruled out MS? Then I had this new MRI and I posted the report. I haven't heard from him yet. I went to the office and picked up the report on my own. I'm just so tired of all of the crap. I wish I could find a doctor who actually could help. I'm tired of the fatigue. I feel like I was out drinking all night but wasn't. I have this pain in my upper left abdomen that comes and goes that no one can tell me what it is. It's just been one big run around after another.

[jazzgirl]

Did you ever go to an MS specialist? You do have an MRI that is suspicious for the disease. That alone should get you an appointment!

[msimpson45]

To be honest with you I thought that I was going to an MS specialist. I live near Albany, NY and I went to a practice out of Albany Medical Center. He's the one who did the lumbar puncture. My husband thinks it's worth a short to go to a specialist in NYC but I'd rather stay in my own area. The doctor I see now his background says he covers a wide range of neurologic illnesses. Probably should scope out another doctor, huh?

[Shashi]

Call the National MS Society (http://www.nationalmssociety.org/index.aspx). They can refer you to an MS specialist.

I hope you get some answers soon. I know how horrible being in limbo can be! (I've been searching for answers for the past five years!)

Hugs,

Lisa

[LouisPLong]

I've only been diagnosed for about 10 or 11 weeks now, but my dx came quickly. MRI on Saturday, admitted Monday, spinal tap on Tuesday, all labs back on Thursday said MS, except for 2 CSF ones that had to be sent out, but confirmed the MS diagnosis.

Sounds like you are being jerked around really bad. I tend to be a PITA when it comes to things like this. Become a pest to the doc, he'll either step up or send you to someone who will take care of it.

[jazzgirl]

I agree with Louis! Be that pain in the butt!

[msimpson45]

I thought that I was being a PITA but I can always try harder

[msimpson45]

I called my neurologist today and it's already 6:45 PM and I still haven't talked to anyone regarding the results of my MRI from last week. The waiting is soooo difficult!!

[lemstar]

Short version of my reply? GO TO THE MS SPECIALIST in NYC!
Longer version?
My story is a bit different, but the outcome is similar. I was seeing the "MS specialist" in our town, and was very dissatisfied for a number of reasons. (I was already clearly diagnosed). i was talking to a friend about it, and she said why don't you go to the big shot in the city an hour away? I said, well, my guy is sort of an MS specialist, they were involved in research on MS, etc. She said "its only an hour away. You don't have to go that often, and I will go with you if you want me to". I finally made an appointment, and went. I saw two MS specialists (that is what they do: MS, and not a host of other neuro issues), and boy, was it different.
So PLEASE go see THE best MS specialist you can find. You are lucky to be near NYC--I know there must be some good docs there.
Try it, you will be glad you did.

[walter510]

Hi Missy! I am from around Albany also. There are three MS specialists in the area. Dr. Pandey at Albany Med, Dr. Cavaliere at The Center for the Disabled and Dr. Edwards up in Latham. I have seen Dr.Pandey(didn't care for her, didn't follow through on anything) and Dr. Cavaliere ( LOVE her!!!). Good Luck! Jen

[Lendi]

The wait is sooo frustrating. My first neuro did things like that. I'd be scared to death and not be able to get any answers out of him. he was tossing out his thoughts on what I might have and some of them were way scarier than MS. then, it was months before he got back with me.