Brain and Spine MRI with lesions radio & neuro disagree

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Zyklon
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Zyklon » Mon Dec 31, 2018 7:19 pm

Trust your MS specialized neuro. Radio guys are NOT qualified to give you an MS diagnosis.

Contrast is nothing to worry about. You will not feel anything, only a 2 seconds injection.

I believe your issues are related with mineral/vitamin levels. Also worth checking blood sugar and thyroid levels.

Take care and stay calm.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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NHE
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by NHE » Mon Dec 31, 2018 9:55 pm

Zyklon wrote:Contrast is nothing to worry about. You will not feel anything, only a 2 seconds injection.
One time I experienced a metallic taste. You might want to bring some TicTacs or something just in case. The recommendation to drink lots of fluid afterward is sound. Just make sure you wait until you have ready access to a restroom.

ElliotB
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by ElliotB » Tue Jan 01, 2019 7:59 am

I did miss from your original post that the neuro you saw was was a MS specialist, sorry. But my advise is the same. To completely rule out MS to your satisfaction, it is probably a good idea to seek out an additional opinion from a neurologist who is a MS specialist.

I know it is frustrating not having a diagnosis and until you get one, there is a lot you can/should do for yourself with regard to your health - improved diet and nutrition, exercise, getting sufficient sleep and the elimination of all stress in your life could make a big difference to how you feel over both the short and long term.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Tue Jan 01, 2019 8:30 am

What kind of panel should I request for bloodwork to do an in depth check of vitamins and minerals? I feel like a lot of docs think this is quackery and give you the cold shoulder. I had about every blood test to rule out MS on the protocol. My thyroid was done in September and glucose. Both normal. Is there a name or panel to request for more vitamin based testing?

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jimmylegs
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by jimmylegs » Tue Jan 01, 2019 9:23 am

hi and hny :)

because diet comes first, you might be interested in checking out this personalized food guide tool:
http://www.healthycanadians.gc.ca/eatin ... p1-eng.php

related general info https://www.hsph.harvard.edu/nutritions ... ing-plate/

there are still many lifestyle factors which can interfere, so sometimes a close look, maybe including testing, is worthwhile. of available tests relevant to ms patients, some are on the mainstream radar and some are not.

as a starting point, it would be good to know some of your existing levels likely already on file. if you don't already have your own copy, that can be a good first step. electrolytes, serum ferritin, anything like that is good to know

any doc should take b12 status seriously in the context of an ms differential dx. it's the oldest and best known nutrient problem to watch for. but even those results can be and are poorly interpreted. your diet info looks on the surface like b12 should be a non-issue. still, it's best to be certain. do you have a copy of your own records to see whether it's been tested already?

serum 25(OH)vitamin D3 is another one mainstream docs are used to requisitioning for ms patients at this point. (there is a possibility of push back on a testing request, because most often -depending to a degree on location- levels do need work, and based on results people tend either ignore instructions to improve status, or overdo it).

in general, mainstream docs receive limited education on preventative methods such as nutrition; this unfortunate reality is well documented in research. more work is required, but incentives are lacking for various reasons. in the meantime patients are in the uncomfortable position of advocating for themselves. that can mean speaking up to ask for a requisition for other less common tests and being prepared to pay for that testing *if* necessary.

for example, vit d3 co-factor testing (eg serum magnesium) is not mainstream to date. the research is starting to get there but it's not in the door at the practice level quite yet. there's also debate re the value of serum vs rbc testing but both have issues and serum mag is much more affordable and is widely used to good effect in research. that said when tests are run, results can easily be interpreted poorly based on local, regional and overall reference ranges. that's why it's best to get your own copy of all results, and not rely on the lab's report re 'normal' or other findings. other important values to be aware of (these are reported often in the ms and in general health and disease literature) include serum zinc and serum copper.

overall for each of these (from b12 to copper inclusive) there is a relatively small optimal range which sites generally in the upper half of the wider reference or normal range. that said, copper seems to be different, levels in healthy controls can be a bit all over the place BUT are consistently *lower* than serum zinc. that said, with copper zinc ratios, balance is always the key. yes it's good for zinc to be higher than copper but if zinc gets too high, it's still a problem. moderation is always the key :)

depending on your location, you may have access to private test requisition services that can help you tailor a suite of nutrient level tests. if your docs will help you out without needing to go to those lengths, so much the better.

one of many private sources for lab requisitions (i don't have access personally, can't review):
https://www.lifeextension.com/Vitamins- ... lood-Tests

hope that helps :)
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!

ElliotB
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by ElliotB » Tue Jan 01, 2019 9:46 am

"I had about every blood test to rule out MS"

Blood tests are typically not used to diagnose MS.

Here are some Common Lab Tests (in case you have not already done them):
- Complete Blood Count. This test, also known as a CBC, is the most common blood test performed. ...
- Prothrombin Time. Also known as PT and Pro Time, this test measures how long it takes blood to clot. ...
- Basic Metabolic Panel. ...
- Comprehensive Metabolic Panel. ...
- Lipid Panel. ...
- Liver Panel. ...
- Thyroid Stimulating Hormone. ...
- Hemoglobin A1C.

Other important blood tests to consider if you have not already had them done:

Vitamin D
Vitamin B panel

Here is a link to the updated McDonald criteria used to help in the diagnosis of MS:

https://www.nationalmssociety.org/About ... eed-the-Di


Keep in mind that there are many, many illnesses that mimic the symptoms of MS, and although you may not have MS, you need to be patient as your doctors figure out what is going on.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Snoopy » Tue Jan 01, 2019 11:29 am

Suzemom wrote:What kind of panel should I request for bloodwork to do an in depth check of vitamins and minerals? I feel like a lot of docs think this is quackery and give you the cold shoulder. I had about every blood test to rule out MS on the protocol. My thyroid was done in September and glucose. Both normal. Is there a name or panel to request for more vitamin based testing?
It is common for a Neurologist to order bloodwork that equals 10-12+ vials of blood. There is no blood test that will rule MS in or out, blood work is for other conditions.

Suzemom
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Tue Jan 01, 2019 3:49 pm

I know you can’t use a blood test to determine if you have ms. :lol: I totally understand that. I was asking a more specific question which was answered by a poster about minerals and vitamin testing. Of course my ms neurologist followed protocol and did a large amount of blood work. “Ruling out ms” is referring to the idea that if any of the other bloodwork showed problems or deficiencies or disease, we could essentially, probably rule out ms by default. I’m aware it’s not definite but the blood work gets you closer to an answer. If it’s positive for hypothyroid, it’s probably not ms. I get that. I was stating that if you go beyond what the bloodwork protocol is, for instance, more in depth nutrient testing, the doctors are not really as open to doing those. Just my experience. So I was asking if there’s a name for the panel to ask for for a wide range of vitamin /mineral levels. Already done the ones that specifically pertain to “ruling out ms”, like B12, etc. plus Lyme, aids, etc etc. and already have normal results for CBC, hemoglobin, RBC, regular once a year type tests. To be honest, I’m not going to post here anymore. This has been frustrating but for a few responses. I just need to get the second round of mris and leave it at that! This is why I had never before reached out to a message board. Takes waaaayyyy too long to type all of this and the responses are barely addressing my original questions. I think it’s too difficult to convey to the board what you truly know and understand in text. Sorry. Good luck to you all. I have to find a better way to handle the anxiety I’m having around my health issues and unknown diagnoses.

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jimmylegs
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by jimmylegs » Tue Jan 01, 2019 8:07 pm

ugh saw that coming, sorry you're feeling frustrated with it all sm :S i get it though!
if you do want to follow up and zero in on the nutrient front specifically, there's always the private messaging option. up to you!
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!

Zyklon
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Zyklon » Wed Jan 02, 2019 2:03 pm

I believe it is not MS. With such symptoms your MS diagnosis would be easy. You experienced something multi system and it was a complex thing. My diagnosis was just in seconds with symptoms like yours. Not even a spinal tap required. If an MS specialized neuro is in doubt, please let him continue. He is the professional. We only have the experience. In short:

Doctors are %99 times right. Post diagnosis is a different story which values experience more than knowledge.

I totally understand the stress, anxiety but you need to help your body. Visiting a psychiatrist may be a very good idea. We all have some hard times and anti-depressants helps us alot.

Peace ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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