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!

[essdipity]

Hi! You've come to the right place for sure.

First of all, your neuro is the pits. MRIs do NOT have to change quickly with MS. The fact that your recent one is not substantially different from the one in October means nothing.

You could well still have a very deficient level of B12. Oral supplements are hardly ever good enough to rectify this problem. You need injections. B12 deficiency and MS have very similar symptoms. Let's hope that B12 is at the bottom of things, because that is very curable.

You are only 22 years old. You should have NO abnormalities whatsoever on MRI, at any time. You have a neuro who would rather draw conclusions from an MRI image that from his own examination. WRONG! There are so many other things to say I hardly know where to start.

You have vertigo. So no doctor can 'rule out vertigo.' That just doesn't make sense. If what they're saying means that you don't fit neatly into their little categories, then one thing is very clear to me: You need a new neuro. Don't stop until you get to the bottom of what's going on with you.

You're not a hopeless case, and your symptoms are NOT normal.

I'm sure others will chime in here, and help you find the medical care you need.

Till then, hang in there and God bless.

ess

[CheeserNurse]

Wow, blessings to you for responding! :) I just joined this site yesterday and I think it's wonderful. I am on facebook as well, and they have a great MS group, so if any of you are on there, make sure you join!

My GP was suspecting Vitamin b12 deficiency again, so we checked my blood levels - everything was normal! I take a sublingual tablet for better absorption. The neuro I have been seeing was actually the one to find the deficiency, but also told me that vitamin b12 deficiency can mask MS and many people with MS are prone to a deficiency. So, when the symptoms 'came back' this semester, he was concerned of MS, and when we did the second MRI, somehow he just said, "well, I'm not concerned anymore."

As a future nurse and current nursing student, I know that you can NOT just be concerned about someone going on medical tests alone. A patient knows their body and their symptoms. The neuro. told me (as he showed me the door) - "well, it could be a stroke, it could be migraines, etc." I wanted him to order me a spinal tap, but he wouldn't do it nor would he order an MRI of my cervical spine. Especially since I've been seeing this neurology chiropractor and my spine is all out of whack! I've seen every specialist from an ENT, ophthalmologist, etc. I really do believe that it's neuro related. I just wanted to join this site so I could read what others go through with MS and how there's started off, etc.

Thank you so much Ess!

~Aleah

[rendean]

Welcome!
I totally agree with Ess: your neuro is the pits, your symptoms are NOT normal and you shouldn't have any abnormalities on your MRI. Regarding the vertigo  and migraine issue: I've been told the same thing  however my latest neuro at an academic teaching hospital thinks the vertigo sounds more like MS than migraines although I haven't been offically diagnosed.

Anyway, find another neuro. Ask around at the hospital. Nurses are a great resource for referrals to good docs. When I worked at the hospital, all of us had "lists" of docs who we wouldn' t let touch us a  patient with a ten foot pole. Nurses know who is good, whose patients do the best and who has the best bedside manner. Start asking around for another name of a GOOD neuro.

Best of luck,
Rendean

[PastorDan]

Wow.  22?  I just turned 52, and you have as much going on as I do.

I like the idea of asking nurses, as suggested by rendean.  I'd also suggest, if such a thing exists in Elkhart, that you look for a neuro who truly specializes in MS.  Check out the Consortium of Multiple Sclerosis Centers, too (I think it's www.mscare.org, but maybe .com).

Wisconsin fan?

[CheeserNurse]

Thank you both for your input here. I do agree I will be trying to find another neurologist, and I think trying to find one who specializes in MS is a great idea! I guess my biggest fear remains that I may not be told anything or that the next neuro. will do the same and tell me he/she is not concerned. My nursing professor who is a nurse practitioner told me it seems like I may be a good candidate for a work up at the Mayo Clinic or Cleveland Clinic. All of my professors believe I need a 2nd opinion. I'm frustrated with MDs telling me that all of my symptoms are stress-related...well, come on!? Who doesn't have stress in their life? The biggest stress of all is continuing to have the symptoms with no answers, but my faith and attitude just keeps me fueled to continue on and to not give up!

I am so grateful to have found this site to read and discuss symptoms and information regarding all of this! It's fantastic! Thank you all!

~Aleah

[essdipity]

Hi again. Yes, an MS specialist is your best bet. I'm afraid that many of our members have had bad experiences with both Mayo and Cleveland Clinic, but there's no harm in trying. Many of us here, including me, have been to multiple neuros before finding one who puts the picture together accurately. It can be a long haul, but that's what this forum is for. The recommendations of your colleagues and doctors you know are a good start. Another idea is to attend a local MS support group and see who they like as neuros.

Keep your chin up.

ess

[Heather3418]

Just for reference, or maybe you would like to inform your Neuro.  My first MRI almost 13 years ago, showed 5, maybe 7 lesions in the brain, one in the spinal cord.  Diagnosed with MS.  The MRI didn't clinch the diagnosis, it was the physical exam and what seemed to be a relapsing/remitting course, with no changes on MRI.  So all of it put together, with no LP, my Neuro still diagnosed MS.

I had NO further lesions appear or disappear for the next 5 years.  NONE.

An MRI in 2004 showed 12 lesions in the brain, one in the spinal cord.  An LP showed typical "O" bands.

MRI of three months ago, 23 lesions in the brain and a slight decrease in size, in the spinal lesion.

So despite what your current Neuro says, MS may not show activity on MRI for several years and not be considered an abnormal course.  He's obviously a "lesion counter," and those Neuro's we need to RUN from.

Run sweetheart, run.......

Best Wishes,
Heather

[Heather3418]

I forgot.   Even ONE lesion is NOT normal and SHOULD be explained.  Your Neuro is not explaining why you show lesions, in my opinon, because his "ideas" just don't fit.

Heather

[CheeserNurse]

Thanks so much Ess. It's good to know that many of the members here have had bad experiences with Mayo and Cleveland. I trust your word and I will keep that in mind. I thought I had researched that MS or MS-symptoms are first diagnosed/recognized in your 20s, so it would make 'sense' since I am 22. I am going to research and see if there is an MS support group here in my area, as well as a neurologist who specializes in MS. I will keep you all posted. Thank you again! I no longer feel like I am alone!!

:-) Aleah

[Nancy T]

Hi Aleah. I hope you succeed in finding relief from your symptoms and, better yet, a diagnosis. It can be very difficult.

Migraine-associated vertigo (MAV) is actually quite common. Migraine can cause a lot of very strange symptoms and affects the vestibular system in many cases. I don't think I'm supposed to post a link here, but please Google timothy hain migraine and you will get to Dr. Hain's MAV page. He is a highly respected Chicago neurologist specializing in dizziness and has a great page on migraine-associated vertigo that I think you will appreciate (it is written for patients but is still quite scientific, detailed, and full of references).

I'm not saying I think that (some of) your symptoms are due to migraine--only that it is a very common thing and worth checking out with respect to the pressure/dizziness/vertigo sensations you are having. Many people get great relief from their dizziness by taking one of the many migraine-preventive medications available and/or by identifying and avoiding triggers.

Good luck!

Nancy

[CheeserNurse]

Wow - all I have to say is that I am just so happy and grateful to all of you who have responded so quickly! This is such a blessing to me in so many ways!! And Heather, my neuro. basically told me that some people are "born" with lesions on their brain. Every person I have shared this with, including MS patients, tell me that they have NEVER heard a neuro. mention that. But of course, I automatically assumed he was right, because, after all, he is the educated one...oh dear, oh dear - I am glad I now know the truth!

I really appreciate your story about your lesions, and that really clears up a lot for me! I'm glad to know that the lesions are progressive, and not always immediate. Nonetheless, it was disheartening sitting down with my neuro., he showing me the MRI, and seeing the 3 lesions and him brushing it off like it was no big deal...I left his office frustrated and totally emotional. For as terrible as I feel with these symptoms, I was almost 'hoping' for a diagnosis - not that I wish MS on anyone, but at least with a diagnosis I could have had a firm plan on what to do next!

I am a nursing student, and currently while I am at clinicals, it's the least I can do to even feel that I can stand up at times! I told my neuro this, just in desperation, and it didn't phase him. He also told me that since I didn't have any vision disturbances or loss of vision in one eye that he wasn't concerned about MS. The worse symptom is this vertigo feeling and feeling that I cannot keep my balance. I know every MS case is different and I am so glad that I am becoming more educated with my own research and the words of everyone on here!

Keepin' the faith,
Aleah :)

[Nancy T]

P.S. As you probably know, migraines can cause small lesions in the brain. Which, again, is not to say that that IS what your lesions are from...only that it's possible.

Be sure to follow all the various internal links on Dr. Hain's page--he actually has several pages on migraine and some of them are more detailed than others. For example, he discusses white-matter lesions on one of them and says: "between 12-47% of patients with migraine have these white matter lesions."

Best wishes,
Nancy

[CheeserNurse]

Thanks so much for taking the time to share this information with me here! I will check Dr. Hain's website out tonight!

~Aleah

[PastorDan]

Unique name, incidentally.  I like it.

Quote: "I thought I had researched that MS or MS-symptoms are first diagnosed/recognized in your 20s, so it would make 'sense' since I am 22."

Whatever you read about MS, I've found it's good to qualify it with adjectives such as "usually" or "most often," perhaps "frequently," even "sometimes" or something along those lines.  There are several here who have been diagnosed in their 50s, which is "too old for MS" if you take the superficial literature literally.

Quote: "For as terrible as I feel with these symptoms, I was almost 'hoping' for a diagnosis - not that I wish MS on anyone, but at least with a diagnosis I could have had a firm plan on what to do next!"

Welcome to our world.  We call it "Limboland."

[CheeserNurse]

My Mom took the name "Leah" from the Bible and decided to add an "A" to the beginning of it, and well, you get Aleah! :) My sister's name is Ariah, taken from Zechariah in the Bible!  If that's what you were indeed referring to in the beginning of your post "Unique name, incidentally. I like it."

[KimRaz71]

WOW!?! your doc is playing it way to safe. I was dx'd with 3 lesions and loss of vision.
I would get a second opinion from another doctor. Have you discussed any other wierd symptoms with this doc. I did and thats what sped up my dx.
I know , they like to take it slow and make sure, but like someone pointed out, they don't have to change quickly to be MS.
I wish u luck.
Kim

[biowham]

What ess and Heather said about running away etc. Get thee to a decent doctor.

Bio

[CheeserNurse]

Yes, I intend to find a decent doctor. It's just very hard when you are not sure who are the 'best' ones around, especially when I was referred to apparently the "best neuro in the state!" Very frustrating!!

[jensequitur]

Cheeser, I was diagnosed with one lesion in the cerebellum, a positive LP, and dissemination in time and space (see the McDonald criteria - if you aren't sick of this already!)  Just one lesion can cause a lot of problems.

[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!

[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]

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...

[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, 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!!