Any idea whats wrong with me?? Possible Mult. Sclerosis?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby gainsbourg » Wed Feb 18, 2009 3:20 am

what do you guys think? yes? no?

Definitely not MS! Your main symptom is kidney stones which is accompanied by pain in back. A lot of your other symptom are almost certainly occuring as a result of the high anxiety you've been experiencing - high fatigue, the constant urination that only occurs some days, twitching, numbness, feeling hot, lack of sleep - this is all classic stress related stuff! I am surprised your doctor is sending you to a neurologist.

Blood in stools

This interests me most. I'll admit you could have some kind of bowel inflammation because that is apparently linked to kidney stones (as are high levels of calcium and vitamin D).

Take Cheerleader's advice - relax a bit, try and take a holiday from all this worrying and get some exercise and sunshine. Take JL's advice and get B vitamins.

The Mayo clinic have a very neat article on kidney stones, I'd read it carefully if I were you - you could have a metabolic disorder. Here is an extract:


High doses of vitamin D, intestinal bypass surgery and several different metabolic disorders can increase the concentration of calcium or oxalate in urine.

* Lack of fluids. If you don't drink enough fluids, especially water, your urine is likely to have higher concentrations of substances that can form stones. That's also why you're more likely to form kidney stones if you live in a hot, dry climate or exercise strenuously without replacing lost fluids.

* Family or personal history. If someone in your family has kidney stones, you're more likely to develop stones too. And if you've already had one or more kidney stones, you're at increased risk of developing another.

* Age and sex. Most people who develop kidney stones are between 20 and 70 years of age. Men are more likely to develop kidney stones than are women.

* Diet. A high-protein, high-sodium and low-calcium diet may increase your risk of some types of kidney stones.

* Limited activity. You're more prone to develop kidney stones if you're bedridden or very sedentary for a long period of time. That's partly because limited activity can cause your bones to release more calcium.

* Obesity. High body mass index (BMI), increased waist size and weight gain have been linked to kidney stones in long-term studies of large populations. The relationship is strongest in women.

* High blood pressure. Having high blood pressure doubles your risk of forming kidney stones

* Gastric bypass surgery, inflammatory bowel disease or chronic diarrhea. Changes in the digestive process affect your absorption of calcium and increase the levels of stone-forming substances in your urine.




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Postby jimmylegs » Wed Feb 18, 2009 5:01 am

that's a good list, but please note, intentional d3 megadosing such that levels are up over 250nmol/L are what i have understood to be associated with high calcium (hypercalcemia). it's still good to make sure d3 is up over 100 nmol/L. (that's 25(OH)D3)
many here on TIMS are struggling with that 100nmol/L challenge alone.

High doses of vitamin D, intestinal bypass surgery and several different metabolic disorders can increase the concentration of calcium or oxalate in urine.


WP if it needs any clarification, the probiotic that cheer mentioned and the acidophilus i mentioned are similar ideas. i take "udo's choice super-8 high potency probiotic" and it has various microorganisms including acidophilus and 7 other strains.
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Postby chrishasms » Wed Feb 18, 2009 9:46 am

JL,

I appreciate most of the stuff you talk about, as my wife is the same kind of person. I do worry though that when you start shooting all these supplements out, well, some folk may decide NOT to go to a doctor. I mean docs are definitely in the pocket books of pharmaceutical companies but sometimes it's good idea to see a doctor. More than likely blood in urine or stools is NOT a sign of a mineral deficiency.

Just to cover your own butt I would start out all my postings with: "Have a full medical workup and if it shows there is nothing wrong then try.....

Just a suggestion. I waited 3 years to go to a doctor for MS because I thought I could fix myself (and the advice of a nutritionist I knew)with exercise and supplements. It only made the exasperation I finally had that made me a cripple even worse. I never fully recovered from it.

I take a horse trailer full of supplements but I also know my doctor said if I didn't have MS I wouldn't ever need to see a doctor.
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Postby jimmylegs » Wed Feb 18, 2009 10:34 am

thanks chris, some excerpts hopefully to allay your concerns:
i'm only commenting with ideas that i have spent some amount of time looking into, others here could round this out.

does any of this conjecture make sense in your particular scenario WP?

i restate the following (once you're off the abx, per doc's orders):

check your d3 levels ... check your zinc, normal range 11.5-18.5, optimal 18

you may have noted that i'm often identifying important things for MS patients to have tested, and relaying info about my own test results - i certainly have never claimed to get these done on my own - any test i've ever gotten was with a requisition, signed by the doc, in hand.
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update

Postby WoodPharm » Wed Feb 18, 2009 2:14 pm

oops..
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Postby WoodPharm » Wed Feb 18, 2009 2:24 pm

blood in urine again, have an apt with urologist in the tomorrow morning, also... the reason for being my "episodes" that have happend 3 times or so at least in the last couple months. Also, my face... the numb tingly itchy cheek with the knife pain behind it, but pain in up under cheek bone.. lasted for couple weeks now. two antibiotics. and due to the current stress level im really not that stress, i have had severe anxiety since i was a wee one... weather it be a cloud in the sky when i was young, or whatever. the list of meds that i have been on just in the last year is... well like 3-4 pages long! But you all know better than me, but im just saying... especially with my face and stuff.. to weird..
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Postby jimmylegs » Wed Feb 18, 2009 3:53 pm

RE: C:
More than likely blood in urine or stools is NOT a sign of a mineral deficiency

JL:
Quote: - blood in urine
taken any antibiotics lately? take a good acidophilus
try a liver/kidney tonic regimen

Quote: - pain in lower back - switches sides about kidney level
d3, drink more water, and again - liver/kidney tonic
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Postby cheerleader » Wed Feb 18, 2009 3:58 pm

Chris...
In Jimmy's defense, I would hope anyone who comes here asking for advice knows that most of us aren't drs...and that we're offering advice from practical experience. We're an "unbiased MS community." Jimmy helped me get Jeff thru some painful spasms w/mag, and has been a font of knowledge regarding supplements. That's her thing...and I'm very thankful for her!
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Feb 18, 2009 4:57 pm

thanks cheer i do try :)
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anti-biotics

Postby WoodPharm » Wed Feb 18, 2009 5:43 pm

i have just finished a series of ciprofloxcin 2x daily for 14 days, nothing, then prescribed Zpak 2x 1st day, 1x 4 days after that. prior to all of this months, i would say 2-4 now, i had passed two kidney stones, they had me on morphine, fetnyl, i forget the third, and then wasn't until they hit me with dilaudid/dilautin I forget which. that finally started helping with the pain. Doctor later came in and told both my dad and I anyone with that much pain-med in him/her we would be breathing for them because they would have been unable to breathe. (keep in mind im 5'11 130-135 pounds) It fricken hurt, after that he said I had one more i was about to pass according to a CT done that night. I started drinking marshmallow root tea every day, along with other healthy beverages. I don't drink pop/soda, coffee. I stay away from caffeine and ANY uppers on the body, I can't handle it. After that I have been in the ER a few times and had CT's done, and nothing shows up... But I did catch one of the stones in a screen! I can't stress enough on my face issue. I can hold ice on my whole upper jaw of teeth and not feel anything. According to my doctor and my history with sinus issues it is not related. I haven't thrown up since I was mere 3-5 years old. If it gets to bad, I dry heave thats it. I have an aortic bicuspid valve on my heart, so I am prone to having antibiotics around, I to take amoxicilin aswell when i got to the dentist, and I have also taken occasional rounds of those. I also notice for the last year-2 my left wrist, when i look at my palm-thumb towards outside, its right at the base of my hand right side on the wrist, sweats! for no reason. I have had a chatter jaw, like when you are cold, but mine would happen when ever. supplements I can now start taking again according to the pharmacist, i was instructed not to while taking the antibiotics i was taking. so the next time im at the market ill be sure to obtain those supp.'s! thank you so much, I hadn't realized so much of the info you have pointed out to me in the previous post(s), and thanks again, Ill keep ya updated for tomorrow as well. I have been slowly kicking the habit as well, I don't want to use any meds for it. I have heard to that if I can keep my BP down it will help with less of a withdrawl and want to have a cig?

I also have been eating yogurt as well, I believe its a probiotic? for the time being anyhow. I have had a varicoseal? on the left side of... male genitals.. ouch! but that was corrected... also a spremadiceal on the other side, the size a dime in a sphere. oh come to think of it... the left side of my heart was the bicuspid.. i do believe i do! anyway thats all i can think of at the moment! Thank you again!! all!
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Postby chrishasms » Wed Feb 18, 2009 6:21 pm

No I agree with everything JL does say, but, I also know I was the guy who did all he could to not go to the doctor. I would go out of my way to listen to anyone who would give me anything to grasp onto rather than sound advice to go see a doctor.

My best friend was Dx's 5 years before me with MS. If I wouldn't have listened to his advice, "It's something else, you do not have MS. It's in your head.", and, a nutritionist saying, "Let me make you better." I wouldn't have waited.

All I am saying is before anything see a doctor. I wish I would have. It's why I am sensitive to other advice before seeing a doctor.
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Postby jimmylegs » Wed Feb 18, 2009 7:52 pm

yea chris i hear that. i've always been one to go to the doc, but i do get kind of cheesed when i find out how simple some of the answers that really make a diff are.
when i got dx'd i set up camp w/ GP, neuro, physio, psychologist, various pharmacists, naturopath (who has ms), and a nutritionist (who didn't know much beyond the food guide) - and joined TIMS ;)

what did your nutritionist tell you you needed to do?

and not to belittle the immense help it has been to have access to various tests and the array of medical professionals, and of course i will continue to go to my doctors, i always do (whether i listen to what they say or not, and thank god they listen to me...)

here are some of my favourite professional health care quotes

:? at this point, you know more about MS than I do

:roll: you have to go through years of medical school to understand the answer to that question

:( i don't think this is really going to help you, but you can keep doing that thing that really aggravates your nerves, just in case

:? wow you're like a role model or something!

8O whoa glad you're here to check my math

:idea: you need to take magnesium

:idea: :idea: get some potassium with that magnesium; they work together

:evil: oh right, it *is* 25(OH)D3 we're supposed to be testing, not 1,25(OH)2D3

:? can you stop calling the office staff, they don't understand you

:? um, we usually advise on the food guide... our student patient demographic doesn't include too many ms cases

:evil: there's nothing wrong with your throat, you need this behaviour modification protocol (JL: then how come it's getting better right now during this appointment, since i took magnesium earlier today, and i can feel it kicking in right this second just like every other time i take it?)
-i don't know.

:? but you haven't ever been b12 deficient (JL: yes i have, your computer isn't graphing my medical record right, go right to the lab results and read them)
-oh.

and from outside the ms arena

:roll: it's a coincidence that your recurrent UTI symptoms cleared up now (JL: ie after using herbs and probiotics successfully once, following years of abx cycles)

:( here's a prescription for your skin lesion that hasn't healed for a year (JL: which i never filled, then identified a zinc deficiency and corrected it - the lesion has disappeared never yet to return
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Postby jimmylegs » Wed Feb 18, 2009 8:28 pm

so getting back on track a bit, these are interesting tidbits to look into further, which i shall:
I also notice for the last year-2 my left wrist, when i look at my palm-thumb towards outside, its right at the base of my hand right side on the wrist, sweats! for no reason. I have had a chatter jaw, like when you are cold, but mine would happen when ever


supplements I can now start taking again according to the pharmacist, i was instructed not to while taking the antibiotics i was taking... I also have been eating yogurt as well, I believe its a probiotic? for the time being anyhow.

yep yoghurt is a good stop-gap but i think the hi potency probiotics may pack more punch for abx recovery...
my yog says "contains active cultures of acidophilus, bifidus, and L.casei" but the udo's bottle says each capsule contains "30 billion viable cells" (8 strains as i mentioned before)

so the next time im at the market ill be sure to obtain those supp.'s! thank you so much, I hadn't realized so much of the info you have pointed out to me in the previous post(s), and thanks again, Ill keep ya updated for tomorrow as well

cool, maybe have a chat with your doc about whether he or she'd order bloodwork, for you to investigate and later monitor nutritional status...

I have been slowly kicking the habit as well, I don't want to use any meds for it. I have heard to that if I can keep my BP down it will help with less of a withdrawl and want to have a cig?
i don't know about that, but you can eat cabbage for a healthier version of nicotine.
smoking (and drinking) deplete nutrients that i think, although i haven't nailed down why, but i think make you crave more bad stuff?? would be good to investigate the zinc status to see where you're at on that front.

I have had a varicoseal? on the left side of... male genitals.. ouch! but that was corrected... also a spremadiceal on the other side, the size a dime in a sphere...

oooooohhh the poor olsen twins?... :S lol
anyway, here we are again, on the vascular front (no pun intended!). have a read of the CCVI thread! and then start hydrating :)
take care of yourself, 'nite,
JL
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update

Postby WoodPharm » Thu Feb 19, 2009 1:37 pm

update:
Hey guys, had my prostate checked again today! ouch. Had a CT with Dye, and Have given another urine sample to check if i may be depositing any "extras" i shouldn't be in my urine as well. Currently just Dx with hematuria. Again tomorrow I see the neuro, as well as pre-op... yep... next wed. I have to get... I forget the name as I was in to much shock of... sticking a camera up into my bladder... galllll.... lol this adventure just gets more exciting along the way! ... lol what to do... It's 14*F outside right now and coooold! but, Still sunny and 70' for me! :) lol but really.... seriously... 2 kidney stones and now this... forecast points towards being the first guy to some how have a kid, and ill be 20ish... lol only so much I can take! :P anyway... sorry guys gotta joke!
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Postby Cojack » Thu Feb 19, 2009 1:40 pm

'guy' in bend ore beat you too it...he's pregnant with his second now :D
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