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Posted 12/7/2006 6:03 PM (GMT 0)
hello...i've been getting mri's for about the past 5 years because of a pituitary tumor....in may of 05 my endocrinologist called to tell me that she found some white spots on my mri and i should see a neuro because it's sometimes a sign of ms......so i did...got another mri of my full brain, one of my cervical and thoracic spine, visual evoked potentials, and a LP....everything was negative and i don't have any symptons that i see described here.....but this whole thing has pretty much consumed me....i read message boards all the time and when i get cold or goosebumps i'm convinced that my legs are tingling....i don't know why but i feel like one day i'm going to end up with ms....i know alot of it is me being paranoid...but i don't know what to do about it.....it's all very frustrating.....can someone have white spots for no reason?????
Posted 12/7/2006 7:39 PM (GMT 0)
One can have white spots for no reason....but -- you said "everything was negative"..so you don't HAVE white spots! An endocrinologist may not be as experienced at reading an MRI as a neuro, and if the neuro didn't find anything...it's quite like there's nothing there! The endocrinologist also said "it's SOMETIMES a sign of MS"....not, "you HAVE MS..."

It could have been that the endocrinologist mis-read the MRI. Or that there were flaws in the MRI (which happens).

Is that a guarantee that you'll never come down with MS? No. But without symptoms, with all the tests negative, and the only "symptoms" you're reporting is that you "get cold or goosebumps" and "your legs tingle"...it's really not likely you have MS.

What to do about it? Clearly you're way stressed. Do you have a counselor, psychologist, psychiatrist, clergyperson, someone to talk with? It's easy to talk yourself IN to these things, and harder to convince yourself otherwise.

Apparently you're still seeing the endocrinologist for your pituitary tumor. Next vist, I'd probably tell him/her that you've seen a neuro, that all the tests have come back negative...can you get copies of that MRI to share with your neuro for comparisons sake, and can they talk with your neuro about the "white spots" they saw -- maybe your neuro can put your mind at ease.
Posted 12/7/2006 7:49 PM (GMT 0)
Hi there,

Yes, people can have white spots without having MS. In this case, they are often called "UBOs" for "unidentified bright objects". There are a whole slew of things that can cause them including but not limited to normal aging, hypertension, collagen vascular disease (ie Lupus, Sjogren's, sarcoid, antiphospholipid), infectious diseases (lyme, HIV, HTLV), vitamin deficiencies, migraine headaches, etc. While I'm not a doctor, MS is very unlikely if you've never had symptoms of neurological dysfunction before you were told about this, have a normal neurological exam, negative spinal MRI, and negative CSF. Quite frankly, in my opinion it was very irresponsible for your endocrinologist to tell you that you may have MS based solely on the MRI in the absence of clinical information either in terms of symptoms or neurological exam. It has probably caused you a tremendous amount of unneccessary anxiety and I personally would see a different doctor. Hope this has been helpful. Has the neurologist you saw given you any insight?
Posted 12/7/2006 7:50 PM (GMT 0)
thanks for the reply :-)

i acutally went to the neuro and he saw my old mri and compared it to a new one....he also saw the spots but after all the tests he called them ubo's-unknown bright objects-and said they were non specific but not likely ms given the work up he did....i had a year check up a few months ago and he said it seemed that there could be some more spots but since the mri he was comparing it to was from another hospital he thought that it was because of the way the mri slices up the pictures....i've become a hypochondriac for sure.....i know i just need to tell myself everything was negative and i'm fine but it's tough.

Posted 12/7/2006 8:18 PM (GMT 0)
Hey Bubby,

Just because you have white spots (sometimes called Flairs or Leisions) or you don't have them.......doesn't mean you do or do not have MS.
All you have is white spots. MS, shows white spots ...different in length, strength, appeareance etc, to everyone that has the disease, ........or nothing at all.

You will see that some people have symptoms, but ALL the MRI's and the LP are negitive. You will hear from people that had leisions all over the place
and yet, no diagnois yet. You will hear from people that have exactly what you describe that may be Lyme Disease or some other look alike.

Uncurable diseases, and more specfic, brain or cnu disease are frustrating by nature. Then when a nurse, or attendent, or even a doctor says the word
"MS' or "Lyme" or "Parkenson" or a ton of other maladies........it triggers a response in our system called fear. Fear because we don't understand it, fear that we have it, fear of what may come or the unknown.

Bottom line Bubby. A good doctor will take their time, rule out what they can, and it can take a very long time to come up with a DX, if there is one.

Something that we have all done, is to keep a diary of symtoms. When they happen, how long they stay, do they move, to they tingle or is it a numbness, etc. This goes for all kinds of symptoms,....headaches, splotches, itching, burning sensation, ear aches, vision problems etc. This kind
of information will be invaluable to the doctor the next time you see them.

As for your frustration......try to deal with as best you can. Keep going down the road. Don't focus on what you may have, focus on what you have....family, career, whatever. This can overwhelm your life if you let it, even if it appears to be nothing at all.....you can drive youself crazy,
and this madness will corrupt everything around you. Back off, take a breath. Become educated if you have some time, about ALL the alternatives
what you describe COULD be. But let your doctor do their job. MS is one of many diseases that will take advantage of your time, you impatience,
and your fear. Don't let it. You may have nothing at all.

Yes, white spots can be there for no reason. Age, a bump in the head, stress, high blood pressure, mini strokes, not to count the diseases that can show these. Let your doctor take control and let him/her worry about it and point you in the right directions.

Short of that..............have a great holiday and welcome to the forum
Posted 12/7/2006 9:24 PM (GMT 0)

Bubby,

Thanks for asking this question.  I can't tell you how invaluable this string of postings has been.  I have a friend right now who just got an MRI for another reason and they found "white spots".  They are small and well circumscribed.  She had been told that MS was a differential and was sent to a neurologist.  Neurologist didn't think they looked like MS lesions and thought they were more likely UBO or from her history of migraines.  She currently is having trouble with vertigo but they are not in a region that would cause vertigo and her neuro exam was normal otherwise.  I had never heard of such things and was scared for her because I know what I have been going through hasn't been easy and I hated to think of someone I cared about going through anything similar.  This is certainly not the end of the road for her and she has more tests to go through (cardio stuff and some more neuro testing to confirm the rule out)but I found it so helpful to know that white spots don't always mean something bad and that they could just be "white spots".  I hope for you that asking this question has been helpful.  And I hope that it is helpful to hear that someone else has these "white spots" and has been told by a neuro that they do not think it is MS.

Snowdog I also found your post particularly helpful for myself.  I have been home with pneumonia for the last month (likely secondary to a prolonged course of steroids)  and I am always otherwise a very busy person.  I have been in Limboland for the last two years (or 9 years if you count when I first had ON) and they are coming very close to giving me a final diagnosis of MS.  This is the first time I have had time to think about any of this and I admit it has been all consuming to me as of late.  I will now be more active in trying to refocus myself on my career and family.   Come what may.  All we can do is take care of ourselves as best we can and practice good healthy living to the best of our ability.  Enjoy what blessings we have in our lives as much as we can enjoy them. ( Sorry to wax philosophical ) 

Thanks everyone. 

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