Limbo stinks.

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

Limbo stinks.

Postby Skatiem » Mon Nov 06, 2017 11:33 am

I've typed and deleted 3 novels. But it all boils down to I hate waiting and I am scared.
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Re: Limbo stinks.

Postby jimmylegs » Mon Nov 06, 2017 7:28 pm

what test results do you have so far? if none, what are your symptoms?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Limbo stinks.

Postby Skatiem » Tue Nov 07, 2017 1:31 pm

No results yet. I had blood work done, the paperwork is at home, but it was basically B-12, creatine protein? and a couple others. MRIs w/wo contrast on Monday and then on Friday.Do they really take up to 2.5 hours? I am a wus and completely dreading them. Results not until 12/5.

Symptoms...my feet have been numb for a long while. Started in the big toe. I think I already mentioned I a wus, therefore i chalked it up to anything and everything else. It spread into my calves really badly one morning and I freaked out and went to the urgent care. They sent me to the Neuro. I had already googled the heck out of everything, so I wasn't too surprised when she mentioned MS, just scary. I've obviously done more Google abuse since. I mentioned as an afterthought, the electrical hum type feeling I get down into my hamstrings when I look down. It's weird but not painful, but she paid too much attention to it. My hands are kind of weird too, but I can't tell if I am just being neurotic and imagining things.

Anyway. I'm a scaredy cat, overthinker and this next month is going to suck. Thanks for listening.
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Re: Limbo stinks.

Postby jimmylegs » Tue Nov 07, 2017 2:37 pm

serum b12 makes sense given what sounds like ascending bilateral numbness and lhermitte's sign.

re the b12 result when it comes in, don't consider anything below 370 pmol/l or 500 pg/ml acceptable.

see if you can ask for serum 25(OH)vitD3 too. also serum magnesium, and serum zinc. and serum copper. plus serum ferritin if not already on file.

bonus points if you can get serum uric acid (nice to have, not need to have).

if you're not in the habit of getting your own copy of lab results, see if you can sort that out as well.

now re lifestyle. typical diet? level of activity?
anyone so far mentioned referring you to a dietitian?

mris are no big. the ones i've been in have a mirror set up so you can see out into the room the whole time. also, until the system broke at my local hosp, they used to have a selection of music to choose from while in the machine. it's probably fixed now - i havent been for mri in ages.

anyhoo what else. oh yeah last time bc the tunes were broken, i just made up tunes in my head to go with whatever patterns of sound the machine had going at the moment https://www.youtube.com/watch?v=xS_V_OgeX-U
none of the mri music on youtube is as good was what my brain had going hehe

to help stay relaxed, you can try something like this in advance https://naturalcalm.ca/sample-natural-calm/

it's all good! deep breaths, watch something funny, have some laughs :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Re: Limbo stinks.

Postby Skatiem » Tue Nov 07, 2017 3:25 pm

Balls. Typed it all in and then switched to full view. Here goes again...
B12/folate serum panel
Methylmalonic acid
Rpr monitor w refl titer
Creatine kinase, total
Ana multiplex w reflex
Sed rate by modified westergren

I will definitely work on being assertive regarding my results. Baby steps :-)

Lifestyle...depressed and lazy. I prefer healthy food, so diet is good. I attempt the whole 30 every so often, but I like the wine too much. I've been taking b supplements after my Google attack, do you suppose I should wait until after the results to continue that?

If I can conquer the stupid scary MRIs, I feel like I will be fine, regardless. At least until the LP...

Tunes. Got it. Distraction. And, thank you very much for your response!
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Re: Limbo stinks.

Postby jimmylegs » Wed Nov 08, 2017 7:02 am

ugh what a pain :S

b12/folate/mma could be telling.

lots of other nutrients to investigate if poss.

re diet = good. what's your estimate of milligrams of dietary magnesium per day?

i looked up whole 30 but the first page i got to did not say what it actually was, and i don't have time to dig thru promos this morning!

re b supplements it is best to do a supp free washout prior to bloodwork. you can avoid supplements between now and your tests, especially if your turnaround time until testing is short. if you can still reverse the numbness with b12 right now, things may not yet be irreversible long term (complacency can land you there in the end however).

lp is ok too as long as they pick the right needle tip design, orient it properly for insertion, and allow for sufficient horizontal rest afterwards.

i think if i had had better zinc status when i went that the puncture would have healed more quickly. as it was, i got the dreaded post lp headache and after struggling for a while in agony, needed days of horrizontal bed rest to avoid going back in to the hospital for a blood patch. (managed it though)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Re: Limbo stinks.

Postby Skatiem » Wed Nov 08, 2017 8:37 am

Whole 30 is just a "diet" where you eliminate gluten, sugar, dairy, processed foods and alcohol for 30 days. No products, just clean eating. I had to Google magnesium rich foods. The "top 10 foods highest in magnesium" are basically staples of mine. Except for fish. Gross. I can't even venture a guess at the levels of magnesium I ingest.

Okay. Needle in the spine and weeks of headaches. That's not scary ;-) Off to Google Zinc...
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Re: Limbo stinks.

Postby Skatiem » Wed Nov 08, 2017 8:47 am

And, thanks again.
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Re: Limbo stinks.

Postby jimmylegs » Wed Nov 08, 2017 9:20 am

ah interesting. my status quo is to avoid processed foods for the most part and limit gluten/sugar/dairy/alcohol without complete avoidance. basically, i understand that these last few are more or less antinutrients and for me if i keep my zinc intake high enough, my body can handle them. these kinds of issues are part of the reason why vegetarians must consume much higher intakes of zinc rich foods daily, per public health recommendations, to compensate for the antinutrient impacts of common staple foods in vegetarian diets.

next. your daily mag intake should be 7-10mg/kg body weight. aim more for 10mg/kg if you have to account for mag-depleting influences such as high stress, alcohol consumption, high activity levels, and depletion from injury, surgery or pharmaceuticals like PPIs.
you can figure out mag per serving for high density mag foods using resources like this:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
with the dark leafy greens, the per serving amount of mag is based on the greens being wilted/cooked.
optimal prep depends on the type of greens. 3 min boil and drain for chard. 1 min boil and drain for spinach.

oh not weeks of headaches shush. you can prevent. :D np.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Limbo stinks.

Postby Skatiem » Wed Nov 08, 2017 6:28 pm

My status quo is usually to avoid them as well, and usually because that's just the way I like to eat. Today I am all like, whatever, I'm tired of my stupid legs and over thinking and not sleeping. Cheese and a slim Jim for dinner :-) I'm getting to work on my nutrition this weekend. Thanks again for your info, you made me feel less alone and freaked out.
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Re: Limbo stinks.

Postby jimmylegs » Thu Nov 09, 2017 6:21 am

hahaha :D
i have been a fan of pepperettes (medium hot from my local farm connection), but they do make a pretty big dent in the daily fat budget :S subject to heavy rationing as a result.
( same with cheese! but i did have a little grilled cheese sammy as part of my supper last nite and it was goooooooooooooood 3: )
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Limbo stinks.

Postby Skatiem » Thu Nov 09, 2017 8:43 am

Ha! At least yours are probably real meat, coming from a farm. Mine hails from Walgreens and is the epitome of awful processed food to eat. I have to put on a disguise when I buy one, what 35 year old person buys slim jims??

Cheese is the bane of my existence. It tries to tell me it doesn't make every recipe better and then attacks my tummy because I don't listen.
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Re: Limbo stinks.

Postby jimmylegs » Thu Nov 09, 2017 9:48 am

if u react to cheese/dairy, could be worth taking a look at zinc in diet and in serum. zinc helps ppl deal with dietary fat too.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: Limbo stinks.

Postby vesta » Fri Nov 10, 2017 3:41 am

jimmylegs wrote:serum b12 makes sense given what sounds like ascending bilateral numbness and lhermitte's sign.

re the b12 result when it comes in, don't consider anything below 370 pmol/l or 500 pg/ml acceptable.

see if you can ask for serum 25(OH)vitD3 too. also serum magnesium, and serum zinc. and serum copper. plus serum ferritin if not already on file.

bonus points if you can get serum uric acid (nice to have, not need to have).

if you're not in the habit of getting your own copy of lab results, see if you can sort that out as well.

now re lifestyle. typical diet? level of activity?
anyone so far mentioned referring you to a dietitian?

mris are no big. the ones i've been in have a mirror set up so you can see out into the room the whole time. also, until the system broke at my local hosp, they used to have a selection of music to choose from while in the machine. it's probably fixed now - i havent been for mri in ages.

anyhoo what else. oh yeah last time bc the tunes were broken, i just made up tunes in my head to go with whatever patterns of sound the machine had going at the moment https://www.youtube.com/watch?v=xS_V_OgeX-U
none of the mri music on youtube is as good was what my brain had going hehe

to help stay relaxed, you can try something like this in advance https://naturalcalm.ca/sample-natural-calm/

it's all good! deep breaths, watch something funny, have some laughs :)


Greetings jimmylegs:

Just for clarification. I believe you were a vegetarian and that lack of Vit B12 damaged your spinal cord? Do you believe poor nutrition is at the that the origin of your "MS" and that you want to warn people about that issue before they go further into "treatment"?

Thanks, Vesta
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Re: Limbo stinks.

Postby jimmylegs » Sat Nov 11, 2017 12:27 pm

yes i was a strict vegetarian. although my spinal lesions were consistent with b12 deficiency (cervical and thoracic) my diagnosing docs ruled out b12 deficiency as a factor in my case, due to a glitch in the doc's computer system.

years after dx i did sit down with the doc and dug through the long text of my old results to show that i'd had a 'less than 75' b12 result in the mix (was the only time i had done a washout beforehand). the text 'less than 75' did not show up on the trend graph, so for me b12 was officially a non issue.

b12 aside, i had other things going on (eg cranial lesions including classic dawson fingers) which were not considered to be associated with b12 deficiency. at that time, i didn't know what other nutrients i should be monitoring. to this day i am not sure if some of my other findings might have been attributable to other nutrient imbalances/insufficiencies. whatever the case, quite early on a therapeutic multinutrient megadose protocol gave me the best short term improvements (3 days).

basically i would hope that anyone with any odd and seemingly inexplicable symptoms, ms or otherwise, would take steps to definitively rule out any lifestyle deviation from public health nutritional recommendations. esp for nutritional issues that are often seen in ms patients in particular.

we aren't properly taught to do this work for ourselves, and docs don't routinely refer patients to the pros who do have the right training to assist.

basically, my hope is that people don't muddy the medical diagnostic picture with the side effects of poor nutrition.

once nutrition has done all it can, if there are still problems, time to look elsewhere. for example in my case chronic neck and hip pain required physiotherapy.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

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