Could this be something else

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Could this be something else

Postby Rowena » Wed Aug 22, 2018 4:03 pm

What are the chances that I was misdiagnosed? I had one episode of double vision, my mri had lesions in my brain and very few (like 2) in my spine, I was positive for the bands in the csf fluid. I need this to be something else that has a cure. I’ve trying to find things and so far my list is at two. What are some things if any that this could be? Accepting this isn’t an option for me.
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Re: Could this be something else

Postby ElliotB » Wed Aug 22, 2018 4:19 pm

Get a second opinion if it will help you feel more comfortable. There is always a chance.

Keep in mind that most people with MS have mild cases and remain healthy and live somewhat normal lives. It sounds like you may have a mild case. Not that any major illnesses are a good thing but count your blessings for what you don't have! MS is very controllable for most.
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Re: Could this be something else

Postby Rowena » Wed Aug 22, 2018 4:26 pm

“Somewhat normal “ and having a disease I have to control is my problem. Will insurance cover a second opinion?
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Re: Could this be something else

Postby jimmylegs » Wed Aug 22, 2018 4:47 pm

i can't estimate the chances you were misdiagnosed, i'm afraid.

spin things a bit, think about controlling your life for optimal health from here forward, and you will be starting down a good track.

csf o-bands indicate inflammation. inflammation = bad. you can do something about that.
one option: check out the free online 'inflammation factor' database and make sure your score each day is at least +100 (ie anti-inflammatory).
i've been taking advantage of the free IF db for years and just took the plunge for the full database (a whopping $5 investment) within the last few weeks, because my friend was diagnosed with cancer. it's pretty awesome.

ms patients have very typical nutrition issues and you can make sure you don't fit that profile either.

status quo to date brought you to this point - might be time for some changes, if you are not prepared to accept illness!
tons of help here for you if you are interested :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby ElliotB » Wed Aug 22, 2018 5:07 pm

“Somewhat normal “ and having a disease I have to control is my problem.

Again count your blessings if you have a disease that you can control!
Please take a moment and carefully read the signature lines of Jimmylegs' post. Very relevant info.

Will insurance cover a second opinion? Perhaps/likely, you will need to check with your insurance company to be sure.
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Re: Could this be something else

Postby NHE » Wed Aug 22, 2018 5:39 pm

Rowena wrote:What are the chances that I was misdiagnosed? I had one episode of double vision, my mri had lesions in my brain and very few (like 2) in my spine, I was positive for the bands in the csf fluid. I need this to be something else that has a cure. I’ve trying to find things and so far my list is at two. What are some things if any that this could be? Accepting this isn’t an option for me.


All of the test results can be associated with other conditions and are not specific to MS though they are "consistent with MS." One common differential diagnosis is a vitamin B12 deficiency. Have you had your vitamin B12 levels checked? A full B12 assay usually includes tests for homocysteine, methylmalonic acid and red blood cell folate in addition to B12.

Please see the following topic for more information. Thanks.

natural-approach-f27/topic24857.html
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Re: Could this be something else

Postby Rowena » Wed Aug 22, 2018 5:51 pm

NHE wrote:
Rowena wrote:What are the chances that I was misdiagnosed? I had one episode of double vision, my mri had lesions in my brain and very few (like 2) in my spine, I was positive for the bands in the csf fluid. I need this to be something else that has a cure. I’ve trying to find things and so far my list is at two. What are some things if any that this could be? Accepting this isn’t an option for me.


All of the test results can be associated with other conditions and are not specific to MS though they are "consistent with MS." One common differential diagnosis is a vitamin B12 deficiency. Have you had your vitamin B12 levels checked? A full B12 assay usually includes tests for homocysteine, methylmalonic acid and red blood cell folate in addition to B12.

Please see the following topic for more information. Thanks.

natural-approach-f27/topic24857.html

Nope I didn’t have this done even though I asked my doctor for this test. I was told there is no way and it is unlikely. It’s time for my one year follow up mri. If it was b12 will my mri be clear if I’ve been taking supplements every day (Well almost every day. I forgot this weekend when I had food poisoning. 99% of days I take it though. Would it be worth it to get my levels checked before my mri? If it is b12 would that clear up bands If I fixed it? I’m sorry for all the questions , but I never believed the diagnosis and thought b12 from day 1. I wasn’t exactly treated like a human though at the hospital so my feelings didn’t count.
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Re: Could this be something else

Postby jimmylegs » Wed Aug 22, 2018 5:58 pm

i used to think it was all down to b12 too, but there was a lot more to it than that.
b12 used to reverse my symptoms but eventually everything else bottomed out as well and that's when the $h!t really hit the fan.
my b12 history was overlooked during my dx, because of a computer glitch noone ever bothered to fix. so be it - i know what the deal was.
definitely check your b12 level, via private testing if you have ready/affordable access, and don't be content with 'normal'. everybody's normal. it's about going for *optimal* levels. labs and docs don't care much about that yet. they've been starting to get there with vit d3 lately, but there's a long way to go still.
DO. NOT. believe everything is down to b12 alone. that is wishful and dangerous thinking, especially if you want to categorically distance yourself, essential nutrient by essential nutrient, from a typical ms patient.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Wed Aug 22, 2018 6:08 pm

jimmylegs wrote:i used to think it was all down to b12 too, but there was a lot more to it than that.
b12 used to reverse my symptoms but eventually everything else bottomed out as well and that's when the $h!t really hit the fan.
my b12 history was overlooked during my dx, because of a computer glitch noone ever bothered to fix. so be it - i know what the deal was.
definitely check your b12 level, via private testing if you have ready/affordable access, and don't be content with 'normal'. everybody's normal. it's about going for *optimal* levels. labs and docs don't care much about that yet. they've been starting to get there with vit d3 lately, but there's a long way to go still.
DO. NOT. believe everything is down to b12 alone. that is wishful and dangerous thinking, especially if you want to categorically distance yourself, essential nutrient by essential nutrient, from a typical ms patient.

I just want this to be anything else. B12 , Lyme disease, and something else (can’t remember or find the name- I was pretty drunk when I found it). I know Lyme disease isn’t unicorns and pixie dust but at least there is a cure. I don’t think a day has gone by in the past year that I haven’t cried at some point.
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Re: Could this be something else

Postby jimmylegs » Wed Aug 22, 2018 6:17 pm

ok please don't treat your anxieties with alcohol - it's a nutrient sucker and it will *definitely* keep you in the basement for essential nutrient status. all the sick people are down there - get back upstairs.
take a deep breath, a high quality multi vit/min, and a solid extra dose of high quality uber-calming magnesium glycinate. relax in an epsom salts bath (that's magnesium too) and know we got your back.
let us know when you are ready for some homework ;)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Wed Aug 22, 2018 6:29 pm

jimmylegs wrote:ok please don't treat your anxieties with alcohol - it's a nutrient sucker and it will *definitely* keep you in the basement for essential nutrient status. all the sick people are down there - get back upstairs.
take a deep breath, a high quality multi vit/min, and a solid extra dose of high quality uber-calming magnesium glycinate. relax in an epsom salts bath (that's magnesium too) and know we got your back.
let us know when you are ready for some homework ;)

I think that’s the magnesium I usually take. I ran out and am using some store bought crud. I’d love to know some solid ways to look up information on b12/ or ms. I have some but I think I need to know for sure that it’s not b12. I wish I had demanded a test, but this was one week post hospital stay and I could barely say anything without breaking down into tears so I accepted it. I see my pcp and neurologist next Wednesday so I’m going to ask for it. If I’m told no I’ll find someone who will do it. My follow up mri is when ever my bf can get off work to take me since I’m going to need a heavy dose of sedation to be still for that.
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Re: Could this be something else

Postby NHE » Wed Aug 22, 2018 10:42 pm

Rowena wrote:Nope I didn’t have this done even though I asked my doctor for this test. I was told there is no way and it is unlikely. It’s time for my one year follow up mri. If it was b12 will my mri be clear if I’ve been taking supplements every day (Well almost every day.


How much B12 are you taking and what form is it, i.e., cyanocobalamin or methylcobalamin, sublingual or tablet you swallow whole?

The doctor's statement sounds like they might have been referencing your other blood test results. There's commonly held misconception that if your complete blood count (CBC) results are OK, then your B12 "must" be OK. However, neurological damage from B12 deficiency precedes hematological changes. Please see the following video. "Everything You Want Your Doctor to Know about Vitamin B12" http://www.youtube.com/watch?v=BvEizypoyO0 featuring Sally Pacholok author of "Could It Be B12? An epidemic of misdiagnoses."

Even with supplementation, it would be good to know what your B12 level is. You want it to be between 500-1000 pg/mL. Sally Pacholok writes in her book that the central nervous system can become deficient in B12 when serum levels drop below 500 pg/mL.

Oh, if you do get tested, then you'll want to stop your B12 and folate supplements at least 4 days in advance to do a wash out. Also note that biotin can interfere with the folate and B12 test results so stop taking biotin as well if you are taking it currently.
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Re: Could this be something else

Postby Scott1 » Wed Aug 22, 2018 10:55 pm

Hi,

There are a great many possible outcomes and you're right to wonder. If you get into the heavy research articles, the choices become endless.

In simple terms, if you have one attack or likely symptom it's clinically isolated syndrome rather than MS. The issue then becomes one of the time to the next attack together with the observations of what makes it an attack. Then it splits into whether the attacks present as one symptom or multiple symptoms. Your age and gender become risk factors. The oligoclonal bands band could be IgG or IgM and that makes a difference in terms of the predictions that forecast the time to what they call neurodegeneration.

There really aren't any generally widely accepted markers hence they focus on lesions. The correlation between demyelinating lesions and progression to disability breaks down over time as well so MRI's are more significant measures of disease progression in early years compared to later. Some lesion are benign and some can be caused by something other than MS and not easily distinguished. Others have distinctive patterns that suggest other problems that may (or may not) be comorbidities with MS.
In other words, it isn't straightforward.

All you can do is try to lead a lifestyle that doesn't enhance inflammation, treat identifiable problems that may or may not relate to MS symptoms, stay fit and eat well. There will be no shortage of advice on how to do that in the posts on this site.

So far, you're a girl with one symptom, minimal deterioration, and (possibly) minimal oligoclonal bands. That's actually a good place to start. If you concentrate on what you can control and extend the time between attacks then that will be a good outcome.

I actually feel you are accepting the facts. However you are quite right about just accepting predictions of the future.

Diet, exercise, monitoring yourself for infections and aspects of inflammation will be your best guides.

It probably worth noting that there are many worse things than MS. I've have been diagnosed for nearly 25 years. It has, on occasions, nearly wiped me out but most people don't even notice I have it. You are starting the right way. Don't freak out if the diagnosis is MS. It doesn't have to rule your life.

Regards,

(ps. This is me a few years ago after a particularly bad attack https://www.youtube.com/watch?v=4lBkf3GVhEE&t=342s . The rule is never give up)
Last edited by Scott1 on Thu Aug 23, 2018 4:49 am, edited 2 times in total.
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Re: Could this be something else

Postby Rowena » Thu Aug 23, 2018 3:27 am

I have no idea what B12 this is. I know it is a tablet but I did not know there were different forms. And My CBC/Chemistry profile was horrible the night I was in the hospital. Pretty much all of it was off. My problem is accepting this without knowing about B12. I work in a medical industry so I KNOW how Drs can be wrong and how they focus on one thing that they want the problem to be and forget everything else. Is there somewhere I can read more about the band difference? You guys seem to know way more about this than me. If I fall down the Dr. Google rabbit hole I end up in a very bad and dark place.
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Re: Could this be something else

Postby jimmylegs » Thu Aug 23, 2018 4:38 am

what motivated you to zero in on b12 in the first place?
what brand is your b12?
what does it say about chemical form and dose per pill, in the fine print on the label?
if you don't know, it's probably cyanocobalamin.

i used to be all anti cyanocobalamin and i was on sublingual methylcobalamin strips for a while, changed my diet, and then basically got over myself. now i don't stress that there's cyanocobalamin in my multi, an only my b-complex has the methyl form - i eat properly, and i'm not worried.

back in the dx phase, my neuro said: yes this and that issue of yours can be b12, but not this other thing, so b12 is not the problem. if i had already figured out what was going on with the computers at my doc's office, and had already been further along with the larger research effort (vs fixated on trying to prove yes it *was* b12), i could have argued 'but surely then, it's a logical component of a larger nutritional problem'. but most of the learning curve was in the future.

a this point, i am reasonably confident that the root of all evils in my case (or at least what allowed any underlying predisposition to manifest) was malnutrition. i made my dietary choices with the best of intentions, but without the right education on board at the time, to correctly evaluate the sources of my information and only take on legit info.

interesting, to have recently found a case study noting demyelination in an anorexic. hmm hmm hmm, you don't say! but it was only a case study. nations don't build public health programs on such flimsy evidence.

as much as we want things to be easy, and simple, they aren't. so many natural and cultural factors are at play. we're complex entities operating within complex environments.

what we can do, is collect evidence-based info on healthy eating, learn to filter out bad science where it exists, take a look at the set of macro and micro nutrient issues that are known to be associated with chronic illness, and make sure our status is not just normal, but optimal. this is only one piece of the puzzle of course, physical activity is an important factor (and nutrition must be matched to levels of exertion, high or low)

if you have your own copies of all your recent lab work, that's great to have on file as a starting point. if you do have yours, can you see a serum ferritin result? it's pretty standard and it's one for which the labs have done a good job providing details on different parts of the range.

b12, even though it's the oldest known nutritional ddx to ms, is still pretty dark ages in terms interpretation given on the lab printout. official deficiency is pretty garbage. i like to sit at around 500 pmol/. really, i consider my lower cutoff to be 370 pmol/l. i'm still working on the evidence base for that target. sure there are things people have thought and published, but it's much easier to support some of the other mid-normal range nutrient targets with research evidence.

for d3, the lab report used to just show deficient in terms of a level that would result in rickets, or not. more recently they've switched it up to add the osteoporosis nuance. the immune element is still working its way through the system and doesn't show up in the d3 'rubric' on lab printouts yet. you just have to know. at least that one can be based on a reasonable stack of science.

other good results to add to your personal library include serum magnesium (don't let anyone talk you into the more expensive RBC mag, which is just as faulty interpretation-wise as its less pricy cousin the serum mag test)

also serum zinc and serum copper (you don't want to start working on zinc without having a good handle on ferritin and copper status first).

there are others, but serum ferritin, serum d3, serum b12, serum zinc and serum copper are a great start.

to address any issues, diet has to be priority one. supplements can mess with natural ratios of different essential nutrients, so caution is in order.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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