My Drs are baffled

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

Re: My Drs are baffled

Postby jimmylegs » Fri Mar 21, 2014 2:43 pm

I've been pondering magnesium some more... I always suggest greens as a good way to get dietary mag but you've said veg can be trouble... so I was wondering, do you think you could tolerate spinach soup if you kept the recipe really simple? you would just need to boil the spinach for 1 minute, drain it, tip it into a pan of hot broth and milk seasoned to taste, and puree the whole thing with a hand blender. thoughts?

here's the ingredients list for a more detailed soup, for an idea of amounts:

Ingredients:
•2 tsp olive oil
•2 cloves garlic
•1/2 medium onion, finely chopped
•1 stalk celery, finely chopped
•1 medium white potato, peeled and cubed
•2 cups chicken or vegetable broth
•2 cups milk
•1 six ounce bag baby spinach
•Freshly ground black pepper

more good info about spinach:

What's New and Beneficial About Spinach
http://www.whfoods.com/genpage.php?tnam ... ce&dbid=43
"... spinach comes out at the top of our ranking list for nutrient richness. ..."
"... Spinach is one of only three vegetables that we recommend boiling to help reduce its concentration of oxalic acid. We recommend boiling for just 1 minute to minimize loss of nutrients and flavor. "
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My Drs are baffled

Postby lyndacarol » Fri Mar 21, 2014 4:13 pm

Lorielynnjackson wrote:Lyndacarol, I saw your post about nutrients being absorbed into the duodenum and your recommended diet? But I can't find the post anywhere, can you repost for me?
Lorie


Is this it? undiagnosed-f54/topic24419.html#p222846
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: My Drs are baffled

Postby lyndacarol » Fri Mar 21, 2014 4:32 pm

Another route? If testing for nutrients shows they are low, apparently some people are asking for intravenous nutrients, according to the Dr. Oz episode which was shown in 2013:


Intravenous Nutrients

Video: http://www.doctoroz.com/episode/extreme ... injections
Article: http://www.doctoroz.com/videos/intraven ... ew-on-that


Oz blender vitamin cocktail: http://www.doctoroz.com/videos/dr-ozs-vitamin-cocktail


Vitamin B12 article: http://www.doctoroz.com/videos/vitamin- ... king-about
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: My Drs are baffled

Postby Lorielynnjackson » Sat Mar 22, 2014 12:27 am

I have friends that have gone for b12 injections and what not, so I think my drs would be open to it... My internists are my cardio and my pulmonary drs. My pulmonary dr suggested that my scoliosis might have something to do with my problems but am not sure about that... Maybe it is the recurrence of the hiatal hernia. :( thanks for sending me the link to that part of the discussion, on diet. Lyndacarol, have you seen the FODMAP diet? It seems mostly gluten free?
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Re: My Drs are baffled

Postby jimmylegs » Sat Mar 22, 2014 3:23 am

hope you didn't miss this lorie undiagnosed-f54/topic24419-15.html#p223021

also, there's a fair bit of research out there on nutrition and scoliosis.

Biochemistry of adolescent idiopathic scoliosis
http://europepmc.org/abstract/MED/21874761
"Measurement of trace elements in serum revealed impaired zinc and selenium metabolism..."

Idiopathic scoliosis and concentrations of zinc, copper, and selenium in blood plasma
http://link.springer.com/article/10.1385/BTER:89:2:105
"A significant decrease of selenium concentration (0.50±0.16 µmol/L) was found when compared with a control group (0.69±0.07 µmol/L) (p<0.01)."

Changes of selenium, copper, and zinc content in hair and serum of patients with idiopathic scoliosis
http://onlinelibrary.wiley.com/doi/10.1 ... ated=false
"The serum selenium concentration in a group of patients with scoliosis versus controls was significantly decreased (0.74 ± 0.13 µmol/L and 0.98 ± 0.12 µmol/L). The serum concentrations of zinc (15.2 ± 2.69 µmol/L) and of copper (16.2 ± 4.18 µmol/L) were without significant differences in comparison with controls (14.3 ± 2.2 µmol/L and 16.6 ± 4.8 µmol/L).
In comparison with controls, the serum selenium concentration in the group of scoliotic patients was significantly decreased p < 0.05 (0.74 ± 0.13 µmol/L and 0.98 ± 0.12 µmol/L)"

for that last one, looks like the controls and the patients are both in less than great shape.. copper shouldn't be higher than zinc. if copper levels are 16 you want zinc levels more like 17...

Congenital Malformations Resulting from Zinc Deficiency in Rats
http://ebm.sagepub.com/content/123/3/692.short
Almost all of the full-term fetuses produced under such conditions showed gross congenital malformations encompassing a wide variety of organ systems, including skeletal, brain, eye, heart, lung, and urogenital defects. ... A variety of skeletal defects, including missing vertebrae, fused ribs, scoliosis, micrognathia and agnathia, syndactyly (fused or missing digits ..."

Vitamin D levels and signs of metabolic bone disease in adolescents with idiopathic scoliosis
http://www.bone-abstracts.org/ba/0002/ba0002P171.htm
"The mean level was 51 nmol/l (S.D.=28). 21 patients (17%) were vitamin D deficient, 47 patients (39%) were vitamin D insufficient..."
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My Drs are baffled

Postby Lorielynnjackson » Sat Mar 22, 2014 9:13 am

Hi Jimmy, I will definitely check into this research re scoliosis... So the basic gist of it,is that if you have scoliosis you are likely to have other malformations? The sore vertebrae I have, is like a lump just almost exactly on the opposit side of the lower sternum? Perhaps they are linked..? Also family history isn't so great either, my mother had pancreatic and liver cancer brought on by antiinflammatories (they have just won the class suit in Canada) , fairly severe scoliosis, epilepsy, huge reflux problems, etc. my father has all the bowl cancers. Not sure quite how much to read into her history except to say I have scoliosis too, reflux problems too, and unfortunately for me the less than beautiful thumbs. :)
I realize I know nothing about you and Lyndacarol, very selfish of me. Do you have a link to your story?
I am still trying to find you the most recent bloodwork, I had so much tests exams, cartscans.., ..sigh. How were you diagnosed?
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Re: My Drs are baffled

Postby jimmylegs » Sat Mar 22, 2014 10:50 am

hi lorie :) the gist of it is, there may be a cross cutting nutritional scenario influencing many of the health problems you've been dealing with over the long term. so essentially yes - if you have the nutrient problems that lead to scoliosis, they may lead to other problems as well. that is NOT to say that you could expect someone with a zinc deficit to share all the combined malformations found in an entire group of test mice raised with zinc completely absent from the mother's diet!

the intergenerational effects of mal- and or mis-nutrition are starting to receive more attention in the scientific literature. it will be very interesting to watch that line of research as it unfolds.

as for me, I was diagnosed in 2006 after a ~15 year increasingly strict stint as a vegan (the last 2 years or so involving deficits I didn't understand or take seriously) and culminating in a sudden neurological episode. I took a different route than most others to my bad nutritional profile! as I read I learned that my blood tests were showing up as matches for the average nutrient levels seen in ms patients. pretty interesting stuff!

it'll be interesting to see some of your results when and if you're able to find the right paperwork :)
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My Drs are baffled

Postby Lorielynnjackson » Sat Mar 22, 2014 11:54 am

Hi, thanks for the breakdown, I will have a look this afternoon for the tests... Did you have minor symptoms at first? Can you explain to me "first neurological episode?" When did you know it was time to go to Dr? As you look back were there any other indicators ...20/20 hindsight is a wonderful thing. I have been reading quite a bit, but am quite curious to a normal persons symptoms... And what tests they used to diagnose(what was abnormal) ... Sorry if you find this prying, you don't have to share if you don't want... Would be quite interesting to have you see the tests... Maybe I can find a couple.. How to send these? Jpg?
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Re: My Drs are baffled

Postby jimmylegs » Sat Mar 22, 2014 12:20 pm

hey no probs :)

my whole long story is here (after the first summary post) www.thisisms.com/ftopict-2489.html

the short version:
recognizing that mine is not a *typical* scenario per se, what with the vegan back story, it started with weakness and numbness that I could get rid of at first, using b12. after messing with it for long enough that b12 didn't work any more, I had a crash that set off a chain neurological reaction (bilateral ascending sensory loss) that has never entirely gone away although I've been able to regain pretty excellent functionality.

you can certainly take an image of the results and although we can't send attachments on the board here, you can send them to my Hotmail (the address is in my profile info). fyi I can't reply to incoming messages (Microsoft is being a pain with verification) but I can certainly receive and view files. hope that helps :)
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My Drs are baffled

Postby Lorielynnjackson » Sat Mar 22, 2014 12:35 pm

note. just tried oatmeal, honey and banana. and it sets off throbbing in the left side of my rib cage. :( perhaps lyndacarol is right about my pancreatic....
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Re: My Drs are baffled

Postby jimmylegs » Sat Mar 22, 2014 12:40 pm

that may well be, but again the cross cutting underlying situation more than likely, in fact I will say with certainty, has a nutritional component. the only question is degree.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My Drs are baffled

Postby lyndacarol » Sun Mar 23, 2014 2:02 pm

Lorielynnjackson wrote:Why would my body be producing too much insulin, or my ovaries too many follicles( which is why I had to have them drilled when I had the hysterectomy), ... Seems like my body is in hyperdrive? What controls those functions... This is why I am wondering at a larger picture... But you are correct, the pain in my back, pain in my left side, and I have been wondering because a lot of my problems seem to revolve around sphincters not working properly. Would this also give me pain and tachycardia and high blood pressure after eating? What is the treatment for this?


I think I found an article that you must read. It mentions "sphincterotomy" and implicates celiac disease (the extreme form of gluten sensitivity) with pancreatitis. More than ever, I think you need to discuss this possibility with your doctor(and maybe even give him a copy of this info):



http://celiac.org/blog/2013/10/22/chronic-pancreatitis/

Chronic Pancreatitis
October 22, 2013

Recent findings:
Celiac disease is a risk factor for pancreatitis. Patients with recurrent acute pancreatitis likely have chronic pancreatitis, do not benefit from pancreatic sphincterotomy, and may not benefit from biliary sphincterotomy. Analysis of endoscopic ultrasonography (EUS) images with an artificial neural network (ANN) program may improve chronic pancreatitis diagnosis compared with clinical interpretation of images. In a multicenter, randomized controlled trial of chronic pancreatitis patients, 90 000 USP U of pancreatin with meals decreased fat malabsorption compared with placebo. Detection of visceral pain in chronic pancreatitis predicts pain relief from various treatments, but nonvisceral pain due to altered central pain processing may respond to agents such as pregabalin. Predictors of surgical pain relief include onset of symptoms less than 3 years and preoperatively no opioid use and less than five endoscopic procedures. Total pancreatectomy for presumed painful chronic pancreatitis remains controversial.

Summary:
Celiacs are at risk for pancreatitis. The diagnosis of chronic pancreatitis may be enhanced by ANN analysis of EUS imaging. Treatment of fat malabsorption requires 90 000 USP U of lipase with meals. Relief of pain from organ directed treatment of chronic pancreatitis may depend upon timing of interventions and whether pain is visceral or nonvisceral.

Authors: Matthew J. DiMagno, Eugene P. DiMagno
Source: Medscape http://www.medscape.com/viewarticle/809 ... _edit_tpal
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: My Drs are baffled

Postby jimmylegs » Sun Mar 23, 2014 4:05 pm

celiac disease can lead to nutrient malabsorption, but deficiency is also present in the newly diagnosed.
makes me wonder if they'd ever get the diagnosis, if the deficiency was corrected first...:

Nutritional status of newly diagnosed celiac disease patients before and after the institution of a celiac disease diet—association with the grade of mucosal villous atrophy
http://ajcn.nutrition.org/content/67/3/482.full.pdf

Associations between biochemical measurements and grades of villous atrophy in newly diagnosed celiac disease patients
Serum magnesium (mmol/L).....0.8 ± 0.03 (0.78–0.85)...............0.8 ± 0.07 (0.73–0.91)...............0.8 ± 0.06 (0.70–0.95)

these numbers are all bad news. research suggests 0.9 should be the lower cutoff for serum magnesium. healthy controls have averages much closer to the top end of the standard normal range (which unlike the ranges found in this study, go as high as 1.1)

Serum zinc (umol/L)...............11 ± 0.................................13 ± 2 ...................................12 ± 2

all of those zinc numbers are terrible. 11 is outright deficient, and no one in this study group gets anywhere close to the 18 umol/L seen repeatedly in healthy controls
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: My Drs are baffled

Postby Lorielynnjackson » Sun Mar 23, 2014 7:11 pm

Wow. Both of you, thank you for the research, I will look up and forward to my Drs. Could be me... When he did the ERCP, I got better for a few weeks, then I got worse again. They did the reflux surgery, better for a few weeks and worse again... each time. When he did the second ERCP, the pancreatic stent didn't push itself out and got sucked up so far it was poking me in the liver(pain in my back was terrible). He had a choice, take it out and the sphincter would shut again (hell no, that was a horrible surgery) and or leave it in and let the sphincter heal open but I had to deal with the pain... wonder if it hurt something in there. Definitely going to check for Gluten problems now. Celiac, ... that would suck, i love my bread (but have laid off it for a little while). Saw black spots in my stool today, not impressed. I think it might be bleeding esophegus or duodenum but not sure... perhaps ulcer from bile reflux? Also, problems lately with heat...if am hot, get instant headache. never used to happen... very odd. I found my tests from last Feb, March, May... to see if I can spot a pattern, and will look for more tests. Jimmy, which results were you looking for? Magnesium, or are there a few indicators? If you let me know i will sort it out, so we can try to see a pattern?
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Re: My Drs are baffled

Postby jimmylegs » Sun Mar 23, 2014 7:17 pm

i think any results you can find would be good to see. then we'll know what's been done and what to request :)

definitely would be interesting to see serum zinc and serum magnesium numbers, to see if your values match healthy controls or the average values seen people who are getting celiac diagnoses (or ms diagnoses, or diabetes diagnoses, etc etc etc!)
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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