Every test but brain MRI neg for MS, Neuro still wants to Dx

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Every test but brain MRI neg for MS, Neuro still wants to Dx

Postby GeneticTrainwreck » Wed Nov 05, 2014 6:03 pm

Hi Everyone,

New here and in a weird situation. Of course, we all are, but mine seems like the inverse of most people's stories and I don't know what to think!

A year ago I had a sudden hearing loss in left ear. I was supposed to get an MRI but blew it off b/c of other health issues I was dealing with. A couple months ago my PCP insisted I have one. The result was my ear was structurally normal but my MRI showed significant white matter intensities. The doc who first read it thought it was CADASIL which is rare and genetic; I researched it & thought it was very unlikely what I had (no family history & I had no symptoms). PCP sent me to a Neurologist. She thought MRI looked more like MS than CADASIL. From what I knew of MS then, I didn't think I had any symptoms of it. She did the standard reflex tests they give you in the office when they suspect MS; no signs of a problem. She literally said that with the degree of wmh's in my brain, I should not be doing as well as I seem to be doing. I thought maybe it could be something else, or maybe people have similar looking brains but just never have an MRI b/c they are asymptomatic, but she didn't think either was possible.

So she sent me for an MRI of my cervical spinal cord. Normal. VEP--also normal. I also had a spinal tap but she didn't have the results yet at my next visit. By this time I had done research on less-common symptoms of MS and started thinking it might be possible. It would definitely explain a lot, primarily my long-term chronic fatigue and some episodes of even more extreme fatigue lasting about 3 days each, and a few little things that I occasionally experienced and found odd but they weren't anything I'd go to a doctor about. At this second visit I brought a list of possible symptoms for her to evaluate, but with two normal test results I figured even if the spinal tap was positive that wouldn't be enough for a diagnosis. But based just on the 1st MRI and my VAGUE symptoms, she not only felt confident of an MS dx but wants me to start taking an MS medication. Yesterday she called and left me a voice mail that my spinal tap was also normal which "might suggest" MS be ruled out, but she still wants to go ahead w/treatment based on reasons in my previous sentence. Is this even possible? It's a well-regarded Neuroscience center, she apparently has a good reputation, but this seems odd to me when it seems like people go through the wringer trying to get diagnosed even when they have at least some positive test results! Anyone ever heard of this kind of situation?

Any input appreciated!

ETA: Any input except anything else about B12. It's been checked, it's good, no I do NOT somehow have a deficiency in spite of not having a deficiency. More importantly, if you post about my "symptoms" in the context of B12 you haven't understood the point of my post: pretty much all I have is an MS-looking brain, one that would suggest someone with significant disability, but that isn't the case functionally. Anyone else had something like this? Or heard of it?

If I get any more B12 posts I will have to conclude this is the very opposite of "an unbiased MS Community." I hope someone posts something that proves me wrong.
Last edited by GeneticTrainwreck on Thu Nov 06, 2014 3:40 pm, edited 1 time in total.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby NHE » Wed Nov 05, 2014 10:39 pm

GeneticTrainwreck wrote:Any input appreciated!

Welcome to ThisIsMS. Here is my 2¢. MS is a diagnosis of exclusion. There are many diseases that mimic MS symptom wise and also some, such as a vitamin B12 deficiency, which can cause enhancing lesions and white matter atrophy. Unlike MS, several of these conditions are treatable. I don't know what other diseases your doctor excluded, but it sounds like you should at least double check to make sure that your B12 level was tested and was found to be in the upper range, i.e., 500-900 pg/mL. Please see the following thread for more discussion about vitamin B12. natural-approach-f27/topic24857.html
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby lyndacarol » Thu Nov 06, 2014 10:41 am

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

Fatigue and hearing problems (even deafness) can be attributable to B12 deficiency. Check the other information at the B12 Awareness website, compare your "other health issues" and the "few little things occasionally experienced and found odd but they weren't anything to go to a doctor about" to the list of possible B12 deficiency symptoms, and discuss the possibility with your doctors.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby GeneticTrainwreck » Thu Nov 06, 2014 11:38 am

Hello,

Thank you both, but I did have my B12 levels checked recently and they were well in the "really good" range. I don't remember the actual number (I'd have to dig it out) but my doc said I might even be "over-supplementing." Not like that's damaging, but it's unnecessary. I was just taking 1 under the tongue B12 daily in addition to my multi-vitamin, but it pushed my B12 level from normal to excessive, and it's a water-soluble vitamin so any excess just gets washed out anyway.

Please remember that my symptoms aren't the primary cause of this neurologist's investigations--it's that my brain shows very significant white matter hyper-intensities that are not the result of one event but many significant events over a number of years, whether those events were infarctions or demyelinations. She showed me my MRI and I'm not great at making sense of these things but even I could tell there was LOTS of activity going on there! My father has a rare type of brain tumor and I've seen his MRI's...lots of swelling before he started treatment, and can just barely see what the doctors are pointing at when they show us where the cancer is, but even his brain didn't have the kind of obvious, bright, symmetrical areas (most intense around ventricles with much less in the frontal lobes, though still present) that my brain does.

The upshot is that unfortunately it's not a nutritional deficiency.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby lyndacarol » Thu Nov 06, 2014 12:25 pm

GeneticTrainwreck wrote:I did have my B12 levels checked recently and they were well in the "really good" range. I don't remember the actual number (I'd have to dig it out) but my doc said I might even be "over-supplementing." Not like that's damaging, but it's unnecessary. I was just taking 1 under the tongue B12 daily in addition to my multi-vitamin, but it pushed my B12 level from normal to excessive, and it's a water-soluble vitamin so any excess just gets washed out anyway.

I am glad to hear that the B12 level in your blood has been checked. You seem to have a good understanding of the complicated B12 pathway: it is a water-soluble vitamin; excess is flushed out in urine; it is not toxic; taking B supplements will skew B12 test results.

Even if the B12 level in the blood is really good, there can still be a B12 deficiency in the tissues if adequate transporter molecule (transcobalamin) is not available.

One must trust that a "well-regarded neuroscience center" has thoroughly ruled out any possibility of a B12 deficiency. And with that off the table, it's on to exclude the other possible causes for your symptoms – all the best to you.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby GeneticTrainwreck » Fri Nov 07, 2014 4:52 pm

lyndacarol wrote:One must trust that a "well-regarded neuroscience center" has thoroughly ruled out any possibility of a B12 deficiency. And with that off the table, it's on to exclude the other possible causes for your symptoms – all the best to you.


Well that doesn't sound at all sarcastic. Which is good, because sarcasm would be inappropriate considering you have no idea who I am seeing. So I will assume you don't mean to be sarcastic and point out that "scare quotes" (followed soon after by italics no less) does read as sarcasm.

TMYK. http://imgur.com/gallery/IW8simF
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby Youarethecure » Fri Nov 07, 2014 5:40 pm

Well if it is MS or a disease you can at least take this as a good thing in my opinion.

If you have so much already going on but are doing well that is good. Your body and brain can compensate for the damage that has happened.

Hopefully its a more "mild" case of MS, if that is what it is.

Did your hearing return? Or with all of the other symptoms have they stopped or gotten better? Or have they lingered?

How old are you? male ? female?.... if you don't mind me asking. Do you or have you smoked cigarettes? Do you have anyone in your family with MS?

Lastly, is this neurologist an MS specialist?

Something serious and traumatic has happened to your brain for it to have white matter and all that. If and when they rule EVERYTHING else out, it can just about only be MS or a disease similar.

I would HIGHLY recommend going to another neurologist who is an MS specialist for a second opinion. Another diagnosis will be all you should feel you need.

I wish the best for you either way. No matter what it is, you can take the proper steps to being as healthy and happy as possible.

Chris
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby Youarethecure » Fri Nov 07, 2014 5:43 pm

Ohh, and don't take that as sarcasm from lyndacarol.

I think you are taking that the wrong way in my opinion.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby GeneticTrainwreck » Fri Nov 07, 2014 6:26 pm

Youarethecure wrote:Well if it is MS or a disease you can at least take this as a good thing in my opinion.

If you have so much already going on but are doing well that is good. Your body and brain can compensate for the damage that has happened.

Hopefully its a more "mild" case of MS, if that is what it is.

Did your hearing return? Or with all of the other symptoms have they stopped or gotten better? Or have they lingered?

How old are you? male ? female?.... if you don't mind me asking. Do you or have you smoked cigarettes? Do you have anyone in your family with MS?

Lastly, is this neurologist an MS specialist?

Something serious and traumatic has happened to your brain for it to have white matter and all that. If and when they rule EVERYTHING else out, it can just about only be MS or a disease similar.

I would HIGHLY recommend going to another neurologist who is an MS specialist for a second opinion. Another diagnosis will be all you should feel you need.

I wish the best for you either way. No matter what it is, you can take the proper steps to being as healthy and happy as possible.

Chris


Hi Chris,

I don't mind answering any of your questions, you bring up many good points.
I am female, 43 yo. Single, also have Asperger Syndrome so if I have MS too I think it will be almost funny, like, what next?? Haha.
My hearing has not improved, unfortunately, even after a last-ditch effort with a course of Prednisone. It did help me eat more, which was good b/c I had lost weight over the past 1.5 years due to illness & stress (I don't like most food, I wash it down with milk or water like it's a pill for the most part; it's an Aspie thing). I think what is worse than the hearing loss is the LOUD tinnitus, which is also pulsatile. WaahWaahWaahWaah it never stops! And I wonder about what forms "exacerbations" or relapses can take, because periodically (and it happens that this is one of those times) I will be knocked flat with a fatigue stronger than my usual baseline fatigue, and it's been dx'ed as a general viral syndrome or something like that b/c that's what it feels like, you know the kind of completely sapped weakness you have with real influenza, where you can't make yourself get out of bed, or if you manage to by force of will, it will be with a hand on the closest wall or table to help? That kind of weakness. It lasts 2-3 days, happens 1-2 times a year for the past 3-4 years approximately. Can something with no other symptoms beyond debilitating exhaustion be an episode of MS, or is it more likely a simple virus?

I have never had a vision loss of the sort usually described as characteristic of MS. Nor anything that felt stroke-like. I have had, twice in the past 10 years (and it was so scary I vividly remember both times) my eyes diverge, by which I mean I could not make them focus on the same thing, like the muscles controlling where they were pointing just completely conked out, stopped working; I was terrified (no exaggeration) that they would stay that way. Both times it lasted only perhaps 5 minutes. My current neuro didn't think this could be an MS symptom, especially w/my VEP results being completely normal.

I am a very light smoker, mostly only do it as a stress release but I don't have a lot of pleasure in life so I'm not very motivated to stop.

There is no family history of MS per se; however, my younger brother, coincidentally, is on the path toward being tested for MS and Lyme Disease because he has had episodes of vertigo combined with currently thinking he had an energy-sapping brain-fogging virus he just can't kick. So that's another reason it was weird to me that I had all these tests come back as "normal." The incidence of MS jumps dramatically for people w/a first degree relative who have MS over the risk/incidence in the general population.

If I do have MS or an MS-like syndrome it is definitely slow progressing, although I have never gotten better I am not getting very noticeably worse. So I am lucky that way.

I was almost let down to hear I had all these normal test results, because testing positive would have turned me from a lazy hypochondriac into a real trooper in the blink of an eye and made me feel a little better about myself! (j/k. Sorta.)

I saw my PCP today for his opinion on getting a second opinion. He's awesome, level-headed, conservative about treatment when there are quality of life issues to consider. He's going to find someone for me to see for a second opinion b/c he isn't down w/putting someone with minimal or possibly no symptoms on a drug with serious potential for harm without being sure what is going on. I could just pick someone randomly out of the phone book but I happen to be lucky enough to have a really smart PCP who will go the extra distance for me and find the right specialist for a second opinion.

~J
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby lyndacarol » Fri Nov 07, 2014 6:30 pm

I apologize if my statements were interpreted as sarcastic. My quotation marks were used to repeat your words, to indicate that these were not my words. I am not acquainted with the term "scare quotes" and only meant to use quotation marks as simple punctuation. My use of italics was to emphasize that a thorough investigation rather than a cursory one is necessary to the reliability of testing.

Again, let me state that no sarcasm was intended. Sarcasm is not my style. I took your words, "Any input appreciated!," literally and was innocently offering ideas. I am sorry that my statement was misinterpreted.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby GeneticTrainwreck » Fri Nov 07, 2014 7:23 pm

lyndacarol wrote:I apologize if my statements were interpreted as sarcastic. My quotation marks were used to repeat your words, to indicate that these were not my words. I am not acquainted with the term "scare quotes" and only meant to use quotation marks as simple punctuation. My use of italics was to emphasize that a thorough investigation rather than a cursory one is necessary to the reliability of testing.

Again, let me state that no sarcasm was intended. Sarcasm is not my style. I took your words, "Any input appreciated!," literally and was innocently offering ideas. I am sorry that my statement was misinterpreted.


Thank you, and I am sorry I misinterpreted your intent. I am very literal and can only go on the cues I am accustomed to. As I posted above, I am going to get a second opinion on the diagnosis. I don't think nutritional issues are the *cause* of how my brain scan looks but again, see my previous post referencing my younger brother...MS is far from straight-up genetic, if it were, there would be an easy pattern of dominance/recessiveness etc. but there is some kind of cascading/epigenetic thing where we have some kind of predisposition but it requires many other factors to fall into place to be expressed.

~J
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby Youarethecure » Sat Nov 08, 2014 9:48 am

if it is MS, it sounds like primary progressive MS in my opinion. It is a very slow onset, can be unnoticeable to some even.

The symptoms of MS can be anything and everything. It is very very very very very different when it comes to people compared to one another.

Personally, an ear problem has hit me as well but I have not lost hearing (I don't think lol). I used to get bad tinnitus on a daily basis. But I have also had eye problems, muscle problems, itching, pins needles, numbness, cognition issues etc etc.

you HAVE to understand whatever this is, stress is really bad for it.

There are plenty of things you can do to try and take control of your health no matter what it is. Exercising, diet, nutrition, and a "stress free" lifestyle all will make you feel better over time. I put stress free in quotations because we all freakin know its impossible to be truly stress free lol :mrgreen:

Find an MS specialist neurologist to get a second opinion from. If it is primary progressive MS, the drugs will not do anything against it. The drugs are for relapse remitting MS ( I think). No matter what, you should take the proper steps to slow it down as best as possible.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby GeneticTrainwreck » Sat Nov 08, 2014 10:33 am

Youarethecure wrote:if it is MS, it sounds like primary progressive MS in my opinion. It is a very slow onset, can be unnoticeable to some even.


Hi,

What makes you think it sounds like the primary progressive type? To me it seems like IF my odd health problems are from MS, it's very episodic; often these episodes hit soon after a period of unusually high stress and last a few days, then I wake up one day and they're gone. The hearing loss seems to be the only thing that's not getting better.

Another "if I have it" is, if I have MS, it's been going on for years. Like as many as ten. Slow onset is one thing, but not getting appreciably worse in *that* long a time? I guess I will have to do some more research! I have known (slightly) two people with confirmed MS. One was young and it had to be the primary progressive type because within a few years of having symptoms he was severely disabled. The other was older and had remitting-relapsing type. For the most part it was difficult to tell she even had a significant health issue unless she told you. She definitely was affected directly by stress. From outside observation and the things the second person told me, my health "stuff" is more like her pattern. But again, I'm not a doctor and I have to keep an open mind.

And I am going to get a second opinion. My primary care is looking into finding someone appropriate.

Thanks,
J

ETA: primary research would seem to indicate my lesions are the inverse of the situation seen most in PPMS. I have significant, almost symmetrical WMH's in the brain, most instensely around the ventricles with a much smaller amount of activity in the frontal lobes. I have no spinal lesions and my CSF panel was completely, 100% normal, with no features indicating MS. I haven't read enough about it yet but it sounds like PPMS will usually show primarily spinal lesions, and often very few or even no brain lesions. Also, I have no problems with my gait and when the doctor ran me through the little series of reflex tests they do when MS is suspected, I had no problem with any of them (I mean in her opinion--I would have no idea whether my response was "normal" unless told). So of course it is a wait and see thing anyway, but my subjective experience is that I have episodes rather than being in a steady decline, no matter how slow a decline can conceivably be. I have no motor problems that are detectable at this point.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby Youarethecure » Sat Nov 08, 2014 10:59 am

First off, don't take what I say worth anything lol. Just my opinion.

Maybe I misunderstood your symptoms.

It can be a very long time for someone to get worse whether progressive or relapsing.

There is also progressive relapsing MS too. Basically you have relapses but never go into "remission" and the symptoms can stay around. But that is very rare.

You can not compare two people that have MS, there are WAY too many variables with this disease.

The only constant is that diet, exercise, nutrition, medications, and lifestyle changes will help whatever the outcome may be. Basically being as healthy as possible is your best bet.Try to reduce stress as much as possible. Maybe some marijuana? That always helps me in many ways hehehe.
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Re: Every test but brain MRI neg for MS, Neuro still wants t

Postby GeneticTrainwreck » Sat Nov 08, 2014 11:14 am

Youarethecure wrote: Maybe some marijuana? That always helps me in many ways hehehe.


I'm with you there--if there's an upside to this, it's that a positive dx would qualify me for medical mj. That would be AWESOME.
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