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 Lorielynnjackson » Sun Mar 23, 2014 10:02 pm

So looking through my medical tests ... this is what I could find. I believe the last time I saw the drs was in May 2013 after the reflux surgery... no followups yet... they will send me to a neurologist when I get back to them...
thanks for giving me your thoughts on this...
Lorie
Nov 8, 2012
Magnesium 1.9 mg/dl ref 1.8-2.4
Trans Glutamic Oxalic (TGO)(ASAT)(1) 16 U/L 15-37
Trans Glutamic Piruvic (TGP)(ALAT)(1) 22 U/L 30-65
Nov8
Magnesium 2.0 mg/dl ref 1.8-2.4
Calcium 8.6 mg/dl ref 8.5-10.1
Trans Glutamic Oxalic (TGO)(ASAT)(1) 14 U/L 15-37
Trans Glutamic Piruvic (TGP)(ALAT)(1) 30 U/L 30-65
Feb 19,2013
Sodium 138 mEq/L ref 135-145
Potassium 3.8 mEq/L ref 3.5-5
Lactate 2.6 mmol/L ref 0.7-2.1
Ionized calcium 1.12 mmol/L ref 1.0-1.3
Hematocrites 38% ref 36-54
Glucose 150 mg/dL 70-110
Magneisum 2.0 mg/dl ref 1.8-2.4
Phospohorus 3.9 mg/dl ref 2.5-4.9

Feb 22 Magnesium 1.7 mg/dl (reference is 1.8-2.4)
sodium 136 mEq/L (ref 135-145)
Feb 23Magnesium 1.8 mg/dl (reference 1.8-2.4)
low white blood cell count, tested positive for yeast in stools
Uric acid 6 mg/dl (ref 7-18)
Calcium 7.4 mg/dl (ref 8.5-10.1)
Chloride 109 mg/dl (ref 98-107)
phosphorus 3 mg/dl (ref 2.5-4.9)
Sodium 136 m Eq/L (ref 135-145)
Potassium 3.4 m Eq/L (ref 3.5-5)
bacteria and white blood cells in urine.
creatine 0.93 mg/dl ref 0.6-1.0
Feb 24
Magnesium 2.2 mg/dl ref 1.8-2.4
Calcium 7.8 mg/dl 8.5-10.1

March 13
Sedements 69.5% ref 40-60
Nitrogenous Urea 5mg/dl ref 7-18
Magnesium 1.5 mg/dl 1.8-2.4
Lactate dehydrogenase (LDH) 695 U/L ref 313-618
GGT (1) 67 U/L ref 5-55
Lipase 431 U/L 73-363
Trans Glutamic Oxalic (TGO)(ASAT)(1) 75 U/L 15-37
Trans Glutamic Piruvic (TGP)(ALAT)(1) 89 U/L 30-65
May 7
Sedement 67.6% ref 40-60
Trans Glutamic PIruvic (TGP)(ALAT)(1) 31 U/L ref 30-65
May 7 Magnesium 1.9 mg/dl ref 1.8-2.4
Trans Glutamic Oxalic (TGO)(ASAT)(1) 18 U/L 15-37
May 9
alkaline phosphatase 31 U/L ref 38-126
Lipase 490 U/L 73-393
Trans Glutamic Oxalic (TGO)(ASAT)(1) 16 U/L 15-37
Trans Glutamic Piruvic (TGP)(ALAT)(1) 16 U/L 30-65
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Re: My Drs are baffled

Postby jimmylegs » Mon Mar 24, 2014 11:56 am

wow thanks for all that! magnesium looks waaaaay down. i will look at everything in more detail later. big day tomorrow and then i'll have a little breathing room again :D
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Re: My Drs are baffled

Postby Lorielynnjackson » Mon Mar 24, 2014 1:00 pm

Hi
Thanks Jimmy, Appreciate and thoughts and advice you can give. Looks like I will see my internist and maybe neurologist next week.... :)
Lorie
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Re: My Drs are baffled

Postby jimmylegs » Tue Mar 25, 2014 1:52 pm

hi again :) ok that's one big day out of the way :D

now. to revisit. on last page we looked at mag levels in new celiacs. they consistently had an average level of around .80 mmol/L.

if we want to compare yours, we have to convert units. just multiply by 0.411

so:

Nov 8, 2012
Magnesium 1.9 mg/dl ref 1.8-2.4
Nov8
Magnesium 2.0 mg/dl ref 1.8-2.4
Feb 22
Magnesium 1.7 mg/dl (reference is 1.8-2.4)
Feb 24
Magnesium 2.2 mg/dl ref 1.8-2.4
March 13
Magnesium 1.5 mg/dl 1.8-2.4
May 7
Magnesium 1.9 mg/dl ref 1.8-2.4

i figured it would be quickest to throw together a little table and you can just look up what each result means. the short answer is that even though your level has been 'normal' throughout, your 2.2 is the closest you've ever come to being in the optimal range. 2.2 has been proposed in research as a lower cutoff for avoiding problems with magnesium insuffficiency. some healthy controls have levels up closer to 2.7.

here's that conversion table :)

1.5 x0.411 =0.62 mmol/L
1.6 x0.411 =0.66 mmol/L
1.7 x0.411 =0.70 mmol/L
1.8 x0.411 =0.74 mmol/L
1.9 x0.411 =0.78 mmol/L
2 x0.411 =0.82 mmol/L
2.1 x0.411 =0.86 mmol/L
2.2 x0.411 =0.90 mmol/L

so about a third of the time you've had magnesium levels bad enough that you should have been treated for deficiency, even with the faulty normal range in use at your lab.

and the majority of the time you have had magnesium levels consistent with patients of various kinds (eg diabetes, celiac disease) rather than healthy controls.

i'll have a look at potassium next. later :) it looks low as well which makes sense - there's an interaction between those two to consider.

if you can find or ask for serum zinc and serum ferritin tests, those results would not hurt either :)
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Re: My Drs are baffled

Postby Lorielynnjackson » Tue Mar 25, 2014 4:01 pm

Hi Jimmy, thank you for the comparison and the analysis. Will definitely get checked for celiac when I see them. There's no results for zinc or ferritin in the tests... Is this normal not to check? I can ask the,t o test it when I see them. Having a lot of bile salt diarhea lately, very white speckles and the last couple of days black speckled... Nausea goes with it.... Perhaps this is also another reason results are low? Perhaps one of the surgeries set off an inflammation ... It all got much worse after the umbilical hernia operation... So maybe the problem is in small intestines. Sounds terrible, I'm looking forward to tests, I want answers and this info might suggest something they haven't looked at yet.... But am still concerned about treating symptoms if there is a larger problem out there... Or in there.
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Re: My Drs are baffled

Postby jimmylegs » Wed Mar 26, 2014 8:17 pm

hi and you're welcome :) i'd strongly suggest you try your best to get your zinc and mag levels into the healthy range and only THEN go get checked for celiac.

i would have thought serum ferritin would be pretty standard, but no they would not automatically test for serum zinc. if you ask for those, get them to run serum copper as well :D

diarrhea is a definite cause of nutrient depletion - it's also a well known symptom of zinc deficiency. could be worth looking into. i get pretty mad hearing about the troubles youve been dealing with after these various surgeries.

if you can get your nutrient levels done and correct any problems you may get some significant improvement in symptoms. there could still be negative post op things going on but maybe you could at least be reassured that your system has what it needs to do what it can with what you have left in there!
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Re: My Drs are baffled

Postby Lorielynnjackson » Wed Mar 26, 2014 11:09 pm

Thanks once again. :) My intention is to see the Internist on Tuesday, tell him the symptom and give him your suggestions and see what he says. Also, I tried the soup you suggested to make... very tasty but the gas was terrible, so dont know if I can do that again. :( seems like everything i should eat I cant'... gas, nausea, pain...
not sure where to go, so drs it is. But definitely to get tests and maybe a second opinion from a second GI. I;m sure they will ask for nutrient tests and if not I will ask. I think the neurological tests, and heart stress tests, etc are on the way but not so sure yet... i think side effects of surgeries(trying to correct symptoms) plus the original problem not being corrected, has caused me a horrible mix..... but i also think there is one problem tying them altogether. For the last 3 mornings I have woken up face swollen, (not normal)... so a little freaked out and stress makes it worse. :( Had a smoothie ad it did the same thing, pain and more pain... (cantelope and papaya)... was nice, but... its all the same. I want to get there, get my cat scans, mris, tests and give me an answer... am so tired. sorry for the vent. I'm sure you must have felt the dame way... :) thanks for talking to me, i hope that busy day was productive and you rocked it. :) thanks for your listening ear... and your time.
Lorie
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Re: My Drs are baffled

Postby jimmylegs » Thu Mar 27, 2014 6:07 am

ok good luck with the internist, hope you get a good response! if not, just keep trying. regular docs don't seem to get much in the way of nutrition education (average 23.9 hours)

this next bit comes from a relatively recent study in BC - there are still far fewer referrals to nutrition specialists than there are patients who could benefit from nutrition help. even while the docs suspect that their patients would likely benefit. they just doesn't have the motivation (time or training) to deal with it.

sorry to hear you're still putting up with so much aggravation :S bummer that the spinach soup didn't work out. i hope you can get some tests soon!
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Re: My Drs are baffled

Postby lyndacarol » Thu Mar 27, 2014 10:54 am

Lorielynnjackson wrote: seems like everything i should eat I cant'... gas, nausea, pain...

For breakfast, could you manage green tea (reduces inflammation), a couple eggs – fried in coconut oil, hard-boiled, or any way you like them – and some applesauce?

For lunch/dinner, could you handle an avocado, baked sweet potato, and chicken salad and green tea again?

The question of finding foods you can eat seems to be the most pressing to me.
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 » Thu Mar 27, 2014 7:08 pm

Hi Jimmy,
Thanks for the good luck I will need it. My first appointment is Monday, I hope he takes me seriously and not just put it off to not eating the right thing, or a pill or... I want the nutrition tests, neurological tests, I think he might give me a cardiac stress test for the blood pressure, tachycardia and palpatations.., he will want to check my nissen to make sure that isn't causing problems, because it is the vagal nerve that is involved and if it was damaged or nicked I could have problems... So am expecting lots of tests... Crossing my fingers. If they send me for blood( which they will) I will let you in. :)
P,s, the spinach soup may not have worked but it was tasty! And my other half loved it! Lol.
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Re: My Drs are baffled

Postby Lorielynnjackson » Thu Mar 27, 2014 7:20 pm

Hi Lyndacarol,
Thank you for the suggestions. I will have to try these. Had a tuna and egg salad wrap without the tortilla, and tummy turned, it's more like feeling e food in the back of your throat, lime you are full in a few bites. I am constantly hungry, I try to eat a few bites , it goes down ok, and sure enough a few bites in like clock work, food in the back of my throat pain in belly, and in left ribs ... Tonight I am working on shrimp Alfredo... Have always tended to steer away even in my youth away from tomatoes... And e pain in my back has kicked in, pain in left rib, ...*sigh* ... Not sure if it's what I'm eating but yes, the pressing issue is what can I eat? Even smoothies make my stomach go ape nuts. Prob the fructose.. And the less I know I can I eat I'm sure the symptoms will get worse according to you and jimmy.... And most likely whatever is causing the problem. Have had some symptoms that have been uncomfortable to say the least... White grains in my bile salt diarhea, black specks even when I don't eat anything black... Undigested food in my stools, swollen puffy face ( not normal swollen, everything e has their norm, but really swollen! Pics are terrible. Have taken for drs record... Also have been tripping, dropping thing, attention is off... :(
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Re: My Drs are baffled

Postby Lorielynnjackson » Thu Mar 27, 2014 7:25 pm

All the stuff that is supposed to regulate stools, or tummy or... Seems like they hurt the worst. If I stick to easy stuff like juice or pudding or mashed potatoes I don't get enough and gradually appetite goes because I'm like what's the point? We are headed to the city Sunday for first appt tues (sorry jimmy I told you mon) so hopefully he tests the crap out of me to make this circus stop or at least tell me what it is is I don't hope and wait for it to get better... Will keep you updated. In the city we are at restaurants constantly so I might have shard time sticking to any form of diet... :( easier at home... I have a friend who is celiac and he mostly eats at home. I see why. Thanks again for taking time to support me , you both have been wonderful. Lyndacarol, how long did it take for them to diagnose you and what set it off?
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Re: My Drs are baffled

Postby lyndacarol » Fri Mar 28, 2014 9:00 am

Lorielynnjackson wrote:All the stuff that is supposed to regulate stools, or tummy or... Seems like they hurt the worst. If I stick to easy stuff like juice or pudding or mashed potatoes I don't get enough and gradually appetite goes because I'm like what's the point? We are headed to the city Sunday for first appt tues (sorry jimmy I told you mon) so hopefully he tests the crap out of me to make this circus stop or at least tell me what it is is I don't hope and wait for it to get better... Will keep you updated. In the city we are at restaurants constantly so I might have shard time sticking to any form of diet... :( easier at home... I have a friend who is celiac and he mostly eats at home. I see why. Thanks again for taking time to support me , you both have been wonderful. Lyndacarol, how long did it take for them to diagnose you and what set it off?


I have debated with myself over the value of publicly posting my story as opposed to sending you a private message. I am still not sure of the value, but others have shared the details of their experiences – so here goes:

My MS symptoms started with tingling in the feet. My first MRI at that time showed nothing – the neurologist told me that I definitely did not have MS. He was wrong! Over the next several weeks the tingling traveled up my legs. One more MRI – NOTHING. Then came two weeks at the Mayo Clinic in Minnesota and LOTS of testing (including a third MRI) which led to an incorrect diagnosis of herniated cervical disc and surgery (cervical laminectomy), which is AWFUL to go through! Symptoms continued; I had the feeling of a constricting band around my upper arm, then numbness in half of my face. My fourth MRI showed lesions in the brain and my neurologist at that time diagnosed me with MS – more than a year after this all began.
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 » Fri Mar 28, 2014 7:59 pm

Hi Lyndacarol, thank you for sharing your story with me. I think it is of value for anyone who is wondering what the heck is happening to their bodies. So it has high value. When they did the MRI did they only check your head or did they check your spine too? They found a white lump on my spine that they said looked like an old injury or calcified bone.. In any case it's a veryainfu. Lump on my spine that came about a year ago. Masseuse said I should get it checked as it looked like a ruptured -does this mean herniated?cervical? ( terms might it be right was in Spanish) .... I have had facial numbness before, and I going fingertips for no reason at all... Just found a CD of my last catscan. And angiogram. MRI can see through the bone to see lesions? Or would a car scan see it too? You went through tests like this too?
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Re: My Drs are baffled

Postby NHE » Fri Mar 28, 2014 11:26 pm

Lorielynnjackson wrote:Hi Lyndacarol, thank you for sharing your story with me. I think it is of value for anyone who is wondering what the heck is happening to their bodies. So it has high value. When they did the MRI did they only check your head or did they check your spine too? They found a white lump on my spine that they said looked like an old injury or calcified bone.. In any case it's a veryainfu. Lump on my spine that came about a year ago. Masseuse said I should get it checked as it looked like a ruptured -does this mean herniated?cervical? ( terms might it be right was in Spanish) .... I have had facial numbness before, and I going fingertips for no reason at all... Just found a CD of my last catscan. And angiogram. MRI can see through the bone to see lesions? Or would a car scan see it too? You went through tests like this too?


Yes, an MRI can visualize the spinal chord as well as the brain. It's the standard MS imaging diagnostic test.

I would recommend taking steps to limit your exposure to CAT scans. They use a very high dose of x-rays. For example, one CT scan of the chest is the equivalent of about 270 regular chest x-rays. That's many lifetimes worth of ionizing x-ray radiation with just one scan.
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