doctor suspected MS but mri was normal

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yabby02
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doctor suspected MS but mri was normal

Post by yabby02 »

I was referred to a neurologist recently, and the first thing he wanted to do was an MRI to "rule out MS" because my symptoms were all over the place. Things that have been ongoing for years now. To name a few:

intense tingling in my left arm when I use it
pain from left hip down throughout the leg; it gets tired very easily and sometimes I trip a little
some weakness in hands
poor memory
speech issues, like the wrong words come out or they get jumbled around
fatigue
stiffness
headaches


Anyway, I did the MRI (brain only, with and without contrast) and it came back normal. So he's moving on to some nerve conduction test or an Electromyography (not sure which, or if they're the same?) ... I think, assuming that there's no MS because of the clear MRI.

I don't want to seem like I'm looking for problems where there aren't any, but at the same time I want to be thorough. The pain in my hips and leg has been worse this week, so I'm wondering if I should call and push for the spinal MRI??

I don't know where to go from here, and I'm not the type to just sit back and let the doctors do it all. Sometimes that works against me :) but I like to be informed, and prepared.
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lyndacarol
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Re: doctor suspected MS but mri was normal

Post by lyndacarol »

yabby02 wrote:I was referred to a neurologist recently, and the first thing he wanted to do was an MRI to "rule out MS" because my symptoms were all over the place. Things that have been ongoing for years now. To name a few:

intense tingling in my left arm when I use it
pain from left hip down throughout the leg; it gets tired very easily and sometimes I trip a little
some weakness in hands
poor memory
speech issues, like the wrong words come out or they get jumbled around
fatigue
stiffness
headaches


Anyway, I did the MRI (brain only, with and without contrast) and it came back normal. So he's moving on to some nerve conduction test or an Electromyography (not sure which, or if they're the same?) ... I think, assuming that there's no MS because of the clear MRI.

I don't want to seem like I'm looking for problems where there aren't any, but at the same time I want to be thorough. The pain in my hips and leg has been worse this week, so I'm wondering if I should call and push for the spinal MRI??

I don't know where to go from here, and I'm not the type to just sit back and let the doctors do it all. Sometimes that works against me :) but I like to be informed, and prepared.
Welcome to ThisIsMS, yabby02.

MS is a diagnosis of exclusion, made when other more likely possibilities have been ruled out. There is no one definitive test for MS – certainly not an MRI.

Knowing this, I can't understand your neurologist, who, as "the first thing he wanted to do" was 'rule out MS' with an MRI– this is not possible. This is not to say that you don't have MS, but only that other conditions need to be investigated first.

Numbness/tingling/pain in the legs and arms (which I find in your list of symptoms) is the textbook definition of "peripheral neuropathy." This is a common symptom in many conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\
Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. Screening to rule out a B12 deficiency cannot be the serum B12 test alone; a serum homocysteine test and a serum (or urinary) methylmalonic acid test should also be done to confirm or rule out a B12 deficiency in the blood.
There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

To answer your specific question, "should I call and push for the spinal MRI?"… My opinion is that more information about the situation is always good. But an MRI, brain or spine, cannot give a definitive diagnosis of MS. Even in many people who ultimately get the MS diagnosis, initial MRIs can be "normal." I myself had three initial MRIs that were "normal."
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Re: doctor suspected MS but mri was normal

Post by ElliotB »

Did you see a neurologist that specializes in MS? My first neurologist was not and was sure I did not have MS. My 2nd neurologist was and was able to make the diagnosis looking at the exact same MRI.
yabby02
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

My family doctor ran quite a few blood tests before sending me over to the neuro. I know she at least tested:
zinc
TSH
lead
insulin
mercury
T4, T3
ferritin
C-reactive protein
a comprehensive metabolic panel
carnitine
Lupus analyzer
cycilic citrul peptid antibody, IGG
anti schleroderma antibody
and, back in last June, a rheumatoid factor test

I suspect my vit B might be somewhat low, because when I stop taking it I feel kind of like I'm going crazy. :( I get a good quality, phosphorylated B-complex and I take twice the recommended amount ... I can tell I feel better mentally when I take it, but it's never done much for the pain.


And I'm not sure if my neuro specializes in MS? Is there a way to find out?
yabby02
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

ElliotB
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Re: doctor suspected MS but mri was normal

Post by ElliotB »

Yes, ask.
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1eye
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Re: doctor suspected MS but mri was normal

Post by 1eye »

After 15 or so years, and after reading this thread, I am not sure even now that I have "MS", or that "MS" even exists. What a supposedly definite diagnosis of "MS" did for me was to cause me to be uninsurable and lose my driver's license, even though I was always a safe driver, and could easily still drive (nothing wrong with my right foot). Whatever I have, it has cost me my job, my guitar playing, my singing voice, and my ability to walk.

My neurologists and others threw every test they could think of at me, except maybe those mentioned in the previous postings. I think I kept a lot of people off the unemployment rolls while they did it. At least I know I don't have syphylis. I would have had to have got it in my sleep, and that wouldn't be any fun. Here in medicare-land (Canada) they never tell you results, or even what you were tested for, unless they get bad news. That, they don't mind sharing. I've had so many blood draws they can't use my arm veins anymore. I also was the grateful recipient of mitoxantrone infusions that probably resulted in a delayed heart attack. The average doctor gets $300K a year, and you can't go to emergency unless you are willing to spend at least half a day of your life awake, doing absolutely nothing (sometimes without your clothes, or even a blanket). Sometimes it can take 1.5 days (to weeks) to be told they can do nothing for you. They have many electronic beeps that do nothing but annoy, all going off constantly, which hospital workers are serenely deaf to.

I can't be treated since they decided I had "SPMS", so the health care system has been overall negative help to me. If I had it to do all over again I would not have accepted the diagnosis. Feel free to pursue one, though. It's your life.

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lyndacarol
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Re: doctor suspected MS but mri was normal

Post by lyndacarol »

yabby02 wrote:My family doctor ran quite a few blood tests before sending me over to the neuro. I know she at least tested:
zinc
TSH
lead
insulin
mercury
T4, T3
ferritin
C-reactive protein
a comprehensive metabolic panel
carnitine
Lupus analyzer
cycilic citrul peptid antibody, IGG
anti schleroderma antibody
and, back in last June, a rheumatoid factor test

I suspect my vit B might be somewhat low, because when I stop taking it I feel kind of like I'm going crazy. :( I get a good quality, phosphorylated B-complex and I take twice the recommended amount ... I can tell I feel better mentally when I take it, but it's never done much for the pain.



And I'm not sure if my neuro specializes in MS? Is there a way to find out?
My first neurologist and MRI reported that I definitely didn't have MS. My second neurologist is THE local expert – head of the MS clinic with hundreds of patients. I finally got the MS diagnosis from his office OVER THE PHONE! I no longer see him!

If you are in the US (Oregon or any other state), you should be able to get a list of your test results; you want the ACTUAL numbers. "Normal" from the nurse simply will not be adequate.


I urge you to discuss the plan of action for investigating your case with your doctor. Compare the list of tests you have taken and those he will order with the list suggested by the University of Chicago.
yabby02
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

Lyndacarol - I live in Oregon, and I can log in online to the hospital and get actual numbers from the tests ... except the MRI, there weren't any numbers involved that I could see.
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

So it's been awhile, but a friend told me that I could get a copy of my MRI to look at myself ... which I thought would be kinda cool. So I got the disc and popped it in, but I do have a question about it.

I thought when they're looking for MS lesions that they show up as "white spots". My report says my MRI was normal, but I see white spots ... does that mean that some white spots are normal? I'm confused.
yabby02
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

I wish I knew how to add pics ...
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NHE
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Re: doctor suspected MS but mri was normal

Post by NHE »

yabby02 wrote:I wish I knew how to add pics ...
Please see the following post in the forums FAQ.
http://www.thisisms.com/forum/site-supp ... tml#p40760
yabby02
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

yabby02
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Re: doctor suspected MS but mri was normal

Post by yabby02 »

Image
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Re: doctor suspected MS but mri was normal

Post by centenarian100 »

Hey yabby. The picture you posted is a T1 sagital image with gadolinium contrast. The "white spots" you see are normal blood vessels which normally fill with contrast dye which normally appear bright. For instance, anterior to your pons is a normal basilar artery. The white spots on top of your brain are normal tributaries to he superior sagital sinus. Abnormal "white spots" in multiple sclerosis are seen on T2 weighted images.

It is possible [though quite uncommon] to have multiple sclerosis despite a normal MRI of the brain

-C
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