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% of people with symptoms that end up with MS diagnosis?

Posted: Wed Dec 28, 2011 6:15 pm
by Krismark0
I realize this isn't a statistic that anyone really knows, but I was wondering if anyone has has an estimation given to them by their neurologist before they ever had any testing.

For example, if you went to the neuro with classic symptoms, have they said something along the lines of "well, you have symptoms of MS, but only a handful of people with these symptoms will actually have the disease" etc?

My neurologist (who was awesome by the way) is sending me for an MRI next week, and he was very willing to answer any questions I had...but I forgot to ask this question.

In my case I meet all the "risk factors"...I am of Polish/German descent, female, 34 years old, and I live right on Lake Michigan. I also have family history but not immediate family (Aunt, Cousin, and several other more that are like second cousins, etc). I also get migraines.

My GP sent me to the Neuro because my right foot has been numb and I had foot drop (for a couple of weeks...it seems to be almost gone now) There were also two days that every time I tried to walk my leg muscles would tense up to the point that I could hardy control my legs (spasm I guess?). I have also been having vision issues for a couple of weeks now, like a migraine aura without the migraine (he did check my eyes and he said they looked good).

Basically he said when they see these things in a young person like me it points to demyelinating disease and he didn't mention any other possible causes. I don't know if that is a good thing or a bad thing. Maybe he didn't want to give me too much to think about, lol. He ordered an MRI of the C & T Spine (with and w/o contrast). That also made me a little confused since I thought MS was in the brain...but he seemed like a smart guy so I'm sure there was a reason for no MRI of the brain.

Anyway...sorry to ramble on.

Anyone's guesstimate or shared experiences would be appreciated!

Re: % of people with symptoms that end up with MS diagnosis?

Posted: Wed Dec 28, 2011 8:01 pm
by jackD
The lack of a Brain MRI is a BIG mistake!! I would call the Neuro and request one.

I have Never had a spine MRI!! It is all in my head!!..

The spinal tap (with two bands showing up) was done after the Brain MRI showed several enhancing lesions. The lesion on the Brain Stem caused almost ALL my moibility problems.

The spinal tap confirmed my DX as MS. This all was done at John's Hopkins.

jackD

Re: % of people with symptoms that end up with MS diagnosis?

Posted: Thu Dec 29, 2011 4:41 am
by Krismark0
If this MRI doesn't show anything and he does not order one of the brain, I will certainly request one.

Just wondering...you say you have never had MRI of the spine? Is it possible it could be found on an MRI of the T and C spine (but since you haven't had one you would not know?) I also wonder if the brain stem might be visible on the C Spine view since it starts at the base of the skull?

Please excuse my questions and I certainly mean no offense...this is just new to me.

Re: % of people with symptoms that end up with MS diagnosis?

Posted: Thu Dec 29, 2011 7:06 am
by shaight
i had both a spine and brain MRI. although, i had the brain first and when legions were present they ordered the spine to complete an MRI baseline.

i had several legions on my brain and nothing on my spine.

my neuro did not suggest anything until the MRI results were in and even then they question everything. i still have not been officially diagnosed, but we are treating it like MS. they want a lot of history to make it official.

definitely check for Lyme!

MRIs

Posted: Thu Dec 29, 2011 1:57 pm
by MarkLavelle
Given the symptoms mentioned, I would think that a spinal lesion would explain a good percentage of them better than a brain lesion (IF it's MS).

My first MRI (brain) found nothing, but there was an obvious lesion in my c-spine. Being only one lesion, it didn't qualify as MS. It was the brain scan a year later with a new lesion (or two) that got me DX'ed as MS.

-- Mark

Re: % of people with symptoms that end up with MS diagnosis?

Posted: Fri Dec 30, 2011 10:42 pm
by Krismark0
Well, I thought things were getting better because the numbness in my foot was almost gone....then today I started having the leg spasms to the point where I could hardly walk again. They only lasted for a few hours and now they just fell a bit stiff but I can walk pretty well. I still feel like I am feeling better overall, but that was kind of an unwelcome surprise today.


I guess I can start the statitstic with myself...my MRI is scheduled on Tuesday. Neuro said he wanted to look at the images himself so I should be able to drop a disk off to him same day or the day after and we'll go from there. I also work for the hospital, so I'll probably go order the radiologist report from the med records department the next day so I can read it.