What to tell my neuro

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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Thinkerbell
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What to tell my neuro

Post by Thinkerbell » Sun Jun 28, 2020 2:40 am

Hey all, first time post because I'm hoping someone here can give insight untangling or linking a few sensory and motor symptoms. Not looking for medical advice, and I will be seeing my neuro, but I just want someone's objective opinion.

I've been dealing with neurological issues for a few years now (nothing to do with anything related to MS symptoms, I had brain surgery and seizures, long story) but I've had an uptick in other, new neurological symptom, and they don't seem connected to everything else. The primary symptom that led me to consider MS is tingling and numbness in my face. It started a little under a year ago, coming and going just on the tip of my nose. I couldn't find any real literature on it, and wrote it off as stress. Lately it's come back, and will affect random spots, usually on the left side of my face, including my nose, cheek, and forehead. Meanwhile, the right side of my face occasionally goes numb, sometimes just part of my cheek or a small space near my lip, and sometimes across the whole side, including my neck and ear. My grandmother had MS, so I'm obviously concerned about genetic risk. In researching symptoms (yes I know internet diagnosing is a bad idea!) I found that there are many links between MS and some of the other random disorders and symptoms I have that never quite linked to anything, including reynaud's syndrome and focal hand dystonia. I'm going to have a check-in with my neuro soon, and although I've accurately self-diagnosed a number of times, he sometimes gets a bit uncomfortable with me pursuing the root of different symptoms, and is content with saying, "well maybe this is just a 'you' thing."

My question is, should I push for identifying the source of these symptoms, and perhaps mention MS despite the risk of sounding like a hypochondriac? Or do I just mention the tingling (again) and wait even more months to see if things keep getting worse?

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jimmylegs
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Re: What to tell my neuro

Post by jimmylegs » Sun Jun 28, 2020 3:41 am

hi tb :) and welcome. if it's something like ms, both genetics and environment will factor in.

i can't provide an opinion on your specific experiences, but my personal approach is to pursue health to the best extent possible, see what is left of any symptoms after that, and let the doctors work with info that isn't clouded by suboptimal self care.

sadly, conventional bloodwork isn't enough because relevant tests aren't always done and when they are, they're often interpreted in terms of outright deficiency vs insufficiencies linked to poor chronic disease outcomes.

waiting until things get worse will likely get all the right checkboxes ticked on some diagnosis, whether it's ms or something else altogether.

in the meantime, alongside your diagnostic inquiries, you could investigate whether all your 'least risk of chronic disease' checkboxes are ticked - still a rather alternative approach. at least it gives the docs a better chance of figuring out what might be wrong that doesn't lie within the modifiable risk factor realm.
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Scott1
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Re: What to tell my neuro

Post by Scott1 » Sun Jun 28, 2020 5:09 am

Hi,
I presume your neurologist was involved in the brain surgery??
We all have 12 cranial nerves. All of them are involved in a range of things. The sensory neurons in those nerves are responsible for altered sensations. Those neurons take the information back to various ares of the brain for processing and interpretation. The issue will be is this something new or is it related to your past surgery. The only way to find out is to look.
Given your history, I would think you are entitled to ask for an MRI.
Regards,

Thinkerbell
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Re: What to tell my neuro

Post by Thinkerbell » Sun Jun 28, 2020 8:34 am

Thanks Jimmylegs, it's true that so many symptoms can be improved with better sleep, exercise, and diet, and I've definitely been making the effort. Hopefully that will help me and my Dr gain some clarity, as you said. Thank you for your response!

Thinkerbell
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Re: What to tell my neuro

Post by Thinkerbell » Sun Jun 28, 2020 8:40 am

Hey Scott, my neuro has been with me since the time when I had my surgery a few years ago (but he wasn't involved in the actual surgery, mostly the fallout afterwards when seizures stuck around anyhow.) The area of my brain affected was by the sensory-motor and speech areas, but it was my right side that was effected then, so I'm not sure why four years later the nerves on the left side of my face would start acting up, but the truth is that weirder things have happened and I wouldn't say it's definitely NOT from my surgery. It has been a few years since the last MRI of my brain, so maybe it's time for one of those again. (I also weaseled out of having another cerebral angiogram a year post-surgery, but maybe I do need better imaging. So not ready to do that again though.) Have mostly been monitoring with EEG, but maybe we should take a peek at how structures have healed. Thanks for your input!

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jimmylegs
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Re: What to tell my neuro

Post by jimmylegs » Sun Jun 28, 2020 10:27 am

Thinkerbell wrote:
Sun Jun 28, 2020 8:34 am
...Jimmylegs... Thank you for your response!
no problem! any time you think it might be worth a closer-than-usual look at seemingly 'normal' status for essential nutrients, i'll be around and happy to help if i can :)
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NHE
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Re: What to tell my neuro

Post by NHE » Sun Jun 28, 2020 11:49 am

Thinkerbell wrote:
Sun Jun 28, 2020 2:40 am
In researching symptoms (yes I know internet diagnosing is a bad idea!) I found that there are many links between MS and some of the other random disorders and symptoms I have that never quite linked to anything, including reynaud's syndrome and focal hand dystonia.
I used to get Reynaud's syndrome. It's caused by vasospasm of the small arterioles. Magnesium may help. Try a highly absorbable form such as magnesium glycinate.

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jimmylegs
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Re: What to tell my neuro

Post by jimmylegs » Sun Jun 28, 2020 1:16 pm

yes, magnesium is definitely one of those essentials for which serum levels may be statistically 'normal', but individuals in the lower end of that normal range are increasingly likely to have symptoms of magnesium deficiency.
some studies have found lower mag intakes https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3968354/
and lower serum mag https://www.sid.ir/en/Journal/ViewPaper.aspx?ID=132525
in ms patients. it's worth ensuring that daily requirements for body size are met, factoring in any magnesium-depleting lifestyle influences and testing to ensure high normal levels.
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

Thinkerbell
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Re: What to tell my neuro

Post by Thinkerbell » Sun Jun 28, 2020 1:53 pm

Thanks for the heads up about the magnesium! (All I've been managing with is fingerless gloves, toe warmers, and hot water. Will definitely check that out on my next blood test!)

This community is so welcoming, helpful and informative, I really appreciate you all! Your advice is helpful whichever way this goes.

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jimmylegs
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Re: What to tell my neuro

Post by jimmylegs » Sun Jun 28, 2020 2:19 pm

happy to help if we can :D
here's some more detailed magnesium info i recently posted for another new member:
viewtopic.php?p=259850#p259850
in case you are not already aware, serum magnesium is not usually on the usual list of conventional tests when bloodwork is done. i'd expect serum mag to be one you'd have to ask for specifically.
hope you get some relief while figuring out next diagnostic steps!
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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