3 lesions found on MRI, yet neuro. isn't concerned...

[CheeserNurse]

Last October I had an MRI and the MRI showed a few lesions on my brain, but not enough for my neurologist to really be concerned at that time--he wasn't suspecting anything real neuro-related....then, based on different blood tests he ordered, I was diagnosed with a vitamin b12 deficiency and the symptoms went away (somewhat) after I began taking my supplement b12. Well, it is almost as if I've" relapsed" and the symptoms are just as bad, if not worse.. My symptoms include the following: I can hardly stand in a non-moving position for long periods of time without feeling EXTREME pressure in my head, like I'm being pushed down to the ground while standing on a rocking boat, almost like a feeling like you're getting off an escalator, which is made worse when I'm sitting down and standing up straight and very still...definitely vertigo! I  feel VERY unbalanced and when the attacks come on, I feel like I'm having a stroke because I feel 'odd' sensations in my head too. So this school semester, I went back to my neurologist and he came to the conclusion that I was experiencing the 'classic' symptoms of MS-multiple sclerosis, and I talked about my symptoms in depth with him, and I have almost all the symptoms...trouble swallowing, sensitive to heat, constipation, tingling in my fingertips, muscle spasms, vertigo, feeling very fatigued, etc.

He ordered another MRI and 2 more lesions were found. I sat down with my neurologist and we looked at my most recent MRI...although he pointed out 3 very small 'lesions', he is convinced that I do not have MS or any neuro. problems. He was suspecting MS because my symptoms so closely related to MS, but because my MRI from October was almost the exact same, not a 'distinct' change, he ruled out MS. He said that MS patients show significant changes in their brain scans, etc... He, did talk to me quite a while about migraines, -and the vertigo symptoms I feel definitely accompany EXTREME pressure in my head. Apparently you can have migraine related vertigo??  I recently began seeing a neurology chiropractor and did find out that my C2 vertebra is out of alignment, almost twisted and not in alignment with my other vertebra. I also have no curvature in my neck vertebra, almost a completely straight line. The adjustments he has been doing on me have helped, but not fully. He assessed me more thoroughly than my own MD Neurologist!  I'm a nursing student, so I am aware of the abnormalities going on in my body. I saw an ENT, he ruled out inner ear vertigo, saw an ophthalmologist, he ruled out vertigo, and the chiropractor believes my symptoms are definitely a result of my brain. Do you think I should get a 2nd opinion from a different MD neuro?? I feel like I'm a hopeless case, but for as much as I know about health care, I would think the answers are out there somewhere! For as bad as these symptoms are, it's hard for me to just accept them as 'normal.' I'm in desperate need of help. My neurologist did not refer me to anyone else, nor did he give me any answers as to where I should go next....Please help!!! I've researched MS a lot and have talked to a few with it as well, but I'm clueless!

[Nancy T]

Aleah--if your vertigo/movement sensations feel better when you're in motion, also read up on mal de debarquement syndrome and see if that maybe sounds like you. This often has its onset after a cruise or other trip, but not necessarily.

Many people with dizziness (though not necessarily MS-caused dizziness) find that when they are highly focused on something--when their attention is directed strongly outward by a situation that demands intense attention or is highly absorbing in some way--they do not notice the dizziness, or at least not so much. (This does NOT mean that the dizziness is not real, only that when your attention is directed outward, it changes the effect of the dizziness--this is the reason that during electronystagmography, you are given a mental task, such as counting backward by sevens or thinking of all the girls' names you can starting with A, B, etc.--by keeping your attention focused, they get better eye-movement readings.)

Please stay optimistic that your dizziness will improve in time or with the right symptomatic relief, because it usually does. I had to change careers at one point because of mine, but after finding the right medication, I was able to return to more or less normal functioning, even though the dizziness itself didn't go away.

Consider trying to find an oto-neurologist. There aren't many of these folks around, but they are neurologists who SPECIALIZE in dizziness and vertigo. Dr. Robb has a list of them on his site, although it may not be a complete list and may include people who wouldn't really consider themselves otoneurologists, but it's a good place to start. Google "robb otoneurologist" and you'll find it--then look for the link to "Otoneurologists in the USA" on the left.

Best of luck,
Nancy

[CheeserNurse]

Thanks, and you're right about one thing. I'd like some symptom relief, even if I keep all of the other symptoms, I really am beginning to lose patience with the vertigo. It's terrible!! As I am on my feet most of the day as a nursing student on the hospital floors, it sometimes does not permit me to even help give care. Sometimes I have to sit down or just walk and walk and walk until I can no longer feel the vertigo. It makes no sense to me that it is worse when I'm completely standing still or sitting down. I do understand and realize that 90% of the white matter is in the brain and that lesions are hard to see in the spinal cord. Thanks for letting me see the other side of things. Thanks for the good luck with my nursing. I am very excited about it!!

[Nancy T]

I think that many neurologists are reluctant to do LPs and spinal MRIs unless they feel that the symptoms and/or office exam and/or MRI findings warrant them. There are a certain number of inattentive, uncaring, and/or ignorant doctors out there. However, I can understand that not everybody needs all testing and that the neuros see many, many patients who suspect they have, or are suspected of having, MS, but who turn out not to have it, so they don't want to order extensive and expensive testing for everyone whose symptoms aren't a more or less classic presentation of MS.

This is understandable--and health-care costs are certainly a huge concern in our society--but, of course, it looks different from the patient's side! YOU are the one who wants to be sure you don't have a possibly disabling disease that might benefit from early treatment. You have a huge stake in the matter. And one wonders whether the neurologist would act differently if you were his/her sister or neighbor or friend. I'd be willing to bet a fair amount of money that most neurologists WOULD be more aggressive if a friend or family member were the patient!

I too had some small lesions and suspicious symptoms (even Lhermitte's). Yet my neuro did not even order a cervical MRI (he said that 90 percent of the white matter is in the brain and it's hard to see lesions on the spine). And indeed, when I did get cervical MRIs 2 and 6 years after the onset of Lhermitte's, which I still have today, 9 years later--there was STILL no evidence of MS in the cervical spinal cord. (I was never diagnosed with anything, and have not seen a neurologist since 2003.)

As for a spinal tap, he said he didn't think it would "yield" anything at that point. I think they are reluctant to order tests that they suspect--based on the judgment they develop over many years of seeing thousands of patients--will likely come out negative.

I'm certainly not saying that this reluctance to do further testing is justified in any particular case--only that it's common (i.e., you have lots of company--it's not just YOUR neuro). If your symptoms continue or develop further, a neurologist down the line may be very willing to do such tests. (In fact, my neuro kept hinting that I still might get a tap "down the road," but he and I gave up on each other.) If you have "only" been seeing doctors for 6 months, even though it may seem like forever to you, it's not that long in the world of neurology. You may need a huge supply of patience before you/they figure out what's going on.

On your route to figuring out what's causing your symptoms, pay the most attention to getting symptom relief. You don't have to have a diagnosis to expect and, if necessary, demand symptom relief. Keep an open mind and try different things. Enlist your PCP for help, and stress the need for getting help with your one or two worst symptoms.

Take care, and good luck with the nursing career! I applaud your willingness to go into such a difficult field, yet one that society needs so much.

Nancy

[CheeserNurse]

Thanks for that. I will watch it now. I guess what I thought the 'classic' symptom of Lyme disease was is a rash on some part of your body, the skin?? I don't have any rashes at all. Did your mother's friend have the rash?? And, my neuro. did the blood test on me and that was negative as well...

[Sweetvelocity]

After reading the post you left on my thread I wanted to know more about your symptoms and I was looking for tingling in the fingers and vertigo and sure enough I found it.

My mother had a friend that had the lesions and numbness in the fingers and vertigo. The did a CT scan and the doctor told her she had MS. Well it turned out she had Lymes. Here is a link to a documentary that could give you some helpful info. I hope you can find out what is wrong. Leave no stone unturned.

http://www.snagfilms.com/films/title/under_our_skin/

[CheeserNurse]

I am not sure if I am allowed to post URL's on this site yet, but this is exactly what my MRI looked like (it is NOT mine), but I searched google images and this is the closest one I can find that resembles mine, although my lesions are smaller and much brighter. I have no clue what part of the brain they are on or what it's called... http://www.disaboom.com/Photos/daniel502/images/40380/original.aspx

I need to get a copy of my MRI - I hope I am allowed to have one. My neuro. would not order me a LP, yet I told him I wanted one or thought it was maybe good to do...nor did he do an MRI of my spinal cord, and I thought that may be good to do, as well...

Thank you!