Limbo stinks.

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

Re: Limbo stinks.

Postby vesta » Wed Nov 15, 2017 10:36 am

jimmylegs wrote: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.


Thanks jimmylegs for your clarification.

I think it would be more helpful for MSers for you to clarify that your principal problem was nutritional. Your advice is great, well appreciated, but for many if not most they need to deal with the fluid circulation issue as well. The lab tests, blood work can take time and the recovery even more so, and in the meantime one isn't dealing with the CCSVI issue. For some all they may need is exercise, massage, acupuncture etc but most people need to be aware that their head stuffiness, heat intolerance, muscle cramps /spasms are probably due to a blood reflux.

Best regards, Vesta
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Re: Limbo stinks.

Postby jimmylegs » Wed Nov 15, 2017 11:23 am

i will never go straight to a ccsvi assumption - especially for those posting in an area entitled 'undiagnosed'.

pursuit of health on its own deserves at least equal attention to matters associated with the pursuit of particular diagnoses, or management once diagnosed.

for those with such concerns, macronutrient (incl hydration) and micronutrient status are directly relevant to patients with ccsvi, as discussed at length elsewhere at TiMS - specifically, in the dedicated ccsvi forum.
a starting point:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17004.html#p168661
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 » Fri Dec 01, 2017 3:36 pm

The MRIs weren't so bad. Glad I didn't overgoogle that, because when he brought out the head gear for the brain scan I had a little freak out for the 30 seconds before I got back in. Many fears conquered! But I totally made up beats in my head to go with the noise.

Anyhow, follow up for results is on Tuesday. I am 100% consumed by it and would rather look at MRI pics on Google and compare mine than get through our audit. My brain is far more fascinating than accounting.

It's probably just super mental stuff, knowing that i will get answers next week, but I am feeling claustrophobic in my body and not sleeping. Stupid legs. Wake the eff up.

I am pretty positive of a b-12 deficiency. And excited to start doing something about it. Either way, I want to know and move forward. You guys are a very positive and helpful group. Thanks for that :-)
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Re: Limbo stinks.

Postby jimmylegs » Fri Dec 01, 2017 4:58 pm

hey, glad it went okay! yay for putting mri noise to work for ya :D

which results next, just the mri, or the bloods as well? i'm pretty curious about that b12 panel.

did you end up trying out a b complex supplement at all?
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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Posts: 10769
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Re: Limbo stinks.

Postby Skatiem » Sat Dec 02, 2017 5:48 am

Blood (9 vials!) and MRIs. I haven't been the healthiest version of myself for a while and the more I read about pernicious anemia, the more it seems to fit. I did start taking a supplement after my bloodwork, but hopefully will get some injections. My boyfriend's brother had it and was wheelchair bound, so the quicker I can get my levels up, the better. We will see on Tuesday :-)
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Re: Limbo stinks.

Postby jimmylegs » Sat Dec 02, 2017 6:31 am

for b12 specifically, if you haven't already, consider picking up some sublingual strips. - over the counter, goes straight into the bloodstream, no need for shots.
a nice bioavailable form like methylcobalamin as opposed to cobalamin can't hurt.
1000 ug per day should be more than enough considering that the intake amount considered 'adequate' on a daily basis is 3 ug.
will look forward to hearing more about your results after tuesday's appt!
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 Dec 12, 2017 11:11 am

No MS! I didn't get the levels because I didn't really have time to process. No lesions, my spine is apparently perfect. B1 was low, and I am positive on the ANA, for RNP. Gamma goblins were low as well. Hematologist on Monday (and omg, he's actually an oncologist -icky) and then a rheumatologist. Limbo shall remain.
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Re: Limbo stinks.

Postby jimmylegs » Tue Dec 12, 2017 11:32 am

great news :) hope you can track down that b12 result.

decent read re healthy food sources of the b complex vitamins

http://whfoods.org/genpage.php?tname=news&dbid=61


"Daily consumption of foods rich in folate, vitamin B12 and vitamin B6 may be protective not only of your heart, but your mind as well.

You can easily increase your intake of these very important nutrients by frequently enjoying the World's Healthiest Foods ranked as excellent sources of these B vitamins.

Excellent sources of folate include spinach, parsley, broccoli, beets, turnip and mustard greens, asparagus, romaine lettuce, calf's liver, and lentils.

Excellent sources of vitamin B6 include bell peppers, turnip greens, and spinach.

Excellent sources of B12 include calf's liver and snapper."

B1 sources http://www.whfoods.com/genpage.php?tnam ... #foodchart
B2 sources http://www.whfoods.com/genpage.php?tnam ... #foodchart
B3 sources http://www.whfoods.com/genpage.php?tnam ... #foodchart
B5 sources http://www.whfoods.com/genpage.php?tnam ... #foodchart

ha i've always considered brown rice a reasonable source, given its role in our collective recognition of B1 as an essential nutrient. not even in the list!! luckily the only things i *won't* eat (oddly, basically every fruit mentioned) are a ways down the list.
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: 10769
Joined: Sat Mar 11, 2006 3:00 pm

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