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!

[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

[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

[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

[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?

[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

[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