My Drs are baffled

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Lorielynnjackson
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Re: My Drs are baffled

Post by Lorielynnjackson »

Hi Jimmy,
Just got my fresh blood/urine test today and have been self evaluating the results... looks like abnormal liver possibly. :( typically lowish magnesium, etc. but I thought you might be interested to see. I have a pdf if you are interested, but I don't know how to give it to you, don't know if PM works to attach a document?
Let me know if you are interested to take a peek? I understand if you are too busy... p.s. Lyndacarol, i'm leaning toward pushing for that insulin test but it might not take much after these results.
Lorie
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jimmylegs
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Re: My Drs are baffled

Post by jimmylegs »

hi yep i am interested :) i can receive files at jimmylegs2013 @ hotmail.com but i can't reply.. it wants a mobile number but i don't have one so it only half works :S weird!
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Lorielynnjackson
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Re: My Drs are baffled

Post by Lorielynnjackson »

Hi Jimmy, Cool. I will send it in a few minutes...
My liver function tests came back elevated @Lyndacarol, so maybe you were on the right track.
More tests upcoming I think...
Lorie
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jimmylegs
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Re: My Drs are baffled

Post by jimmylegs »

what track was that, lorie? recall all this stuff is interconnected..
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jimmylegs
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Re: My Drs are baffled

Post by jimmylegs »

hi again got the file - that magnesium at 1.9 is REALLY BAD. needs a significant boost asap. i'd say just for starters, go for 2.3 at a bare minimum (it has been proposed as a lower cutoff in the research lit)

since the GI issues are what they are, i'd ask the doc about injections, and also pick up some magnesium bath flakes for soaking, and some powdered magnesium for drinking.

i have tried this powdered magnesium and it's good. you just mix it in hot water. it's mag citrate not mag glycinate, but it would help you get some mag into your system.
http://www.iherb.com/natural-calm

i haven't bought these myself so can't comment on brands, but this stuff is supposed to be better than the other option (epsom salts)
http://ca.iherb.com/Life-Flo-Health-Pur ... =null&ic=1

you can also dissolve those flakes into a cup of boiling water to make a highly concentrated 'oil' that you could apply topically or as a foot soak.
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Lorielynnjackson
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Re: My Drs are baffled

Post by Lorielynnjackson »

Hey Jimmy, Thanks for your feedback. I got my MRI of head back today and they say it looks clean, but am sure about Drs opinion. He is a very good cardiologist but I think he is missing the point when it comes to my other symptoms. I am currently doing a 24 hr urine tiers to check hormones in adrenal glands etc. If that comes back clean I will request neurologist appointment. But at the moment I have decided to go for a second opinion on the GI stuff. He blew off the hiccups, pain, nausea and is trying to push drugs until they figure it out. I think these drs have been watching my body for too long and it needs fresh perspective, he didn't even mention the magnesium level. Perhaps a neurologist will see that. Also, is blowing off pancreatic issues, and this other GI specializes in that, so it's worth a try. Appt next week I think... Thank you for your suggestions re magnesium I hesitate to start treating before I see drs or get some form of diagnosis tho, in case it masks the symptoms... And they are terrible right now. For some reason the barium swallow has reacted badly and it has been a rough couple of days...
Oh, Jimmy. As for the track Lyndacarol was on, re pancreas and insulin, or celiac or gluten sensitivities.. Maybe, as I sit here after chicken potatoes and veg, with a stabbing pain in my left back and pain in my abdomen, I feel like she might be on the right track? What do you think?
Lorielynnjackson
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Re: My Drs are baffled

Post by Lorielynnjackson »

Hey Lyndacarol,
I just googled one of the meds that the dr is trying on me to see if it helps called endial digest. Says it is prescribed for pancreatic insufficiency... Have you heard anything about this?
Lorie
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lyndacarol
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Re: My Drs are baffled

Post by lyndacarol »

Lorielynnjackson wrote:Hey Lyndacarol,
I just googled one of the meds that the dr is trying on me to see if it helps called endial digest. Says it is prescribed for pancreatic insufficiency... Have you heard anything about this?
Lorie
No, I do not know anything about this medication. "Pancreatic insufficiency" sounds like a pancreas that is not producing enough digestive enzymes – is this medication described as a digestive enzyme? There should be good information on the product insert that comes with the medication… Or call your pharmacist and ask. My concern is that your pancreas is producing too much insulin (Insulin is the hormone necessary for ferrying fuel into the cells to be burned for energy or to be stored as fat. Insulin is a very irritating substance – I have heard it described as "lye in the pipes.").
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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lyndacarol
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Re: My Drs are baffled

Post by lyndacarol »

Lorielynnjackson wrote:Hey Jimmy, Thanks for your feedback. I got my MRI of head back today and they say it looks clean, but am sure about Drs opinion. He is a very good cardiologist but I think he is missing the point when it comes to my other symptoms. I am currently doing a 24 hr urine tiers to check hormones in adrenal glands etc. If that comes back clean I will request neurologist appointment. But at the moment I have decided to go for a second opinion on the GI stuff. He blew off the hiccups, pain, nausea and is trying to push drugs until they figure it out. I think these drs have been watching my body for too long and it needs fresh perspective, he didn't even mention the magnesium level. Perhaps a neurologist will see that. Also, is blowing off pancreatic issues, and this other GI specializes in that, so it's worth a try. Appt next week I think... Thank you for your suggestions re magnesium I hesitate to start treating before I see drs or get some form of diagnosis tho, in case it masks the symptoms... And they are terrible right now. For some reason the barium swallow has reacted badly and it has been a rough couple of days...
Oh, Jimmy. As for the track Lyndacarol was on, re pancreas and insulin, or celiac or gluten sensitivities.. Maybe, as I sit here after chicken potatoes and veg, with a stabbing pain in my left back and pain in my abdomen, I feel like she might be on the right track? What do you think?
Perhaps yours is a rhetorical question, not seeking an actual answer. In my opinion, this site is composed of supportive friends, whose common foe is this dreadful disease called MS. We come from diverse experiences and hold diverse ideas, which we put forth for everyone's consideration, tolerance, and input to fine tune a hypothesis. We may share some ideas, but do not necessarily agree on most - my personal suspicion is that gluten sensitivity (even to the point of "leaky gut") and excess insulin (with resulting insulin resistance) is involved in many MS (or "neurological") symptoms. (I accept that this is not at all conventional.) Thanks to the contributions of fellow members with postings about vitamin B 12 deficiency I now think that could very well be involved, too.

I think it is unfair to ask jimmylegs for her judgment on my proposals. She is entitled to think I am completely wrong; please don't publicly put her on the spot for a verdict. If her opinion is critical for a decision you must make, I think your question is more appropriately asked in a private message (PM).

Once again, these are my personal thoughts; many may disagree with me – this freedom is the beauty of this site.
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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jimmylegs
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Re: My Drs are baffled

Post by jimmylegs »

thanks for clarifying lorie - i'll say again as i have before that we are all looking at the same thing from different angles and it's all interconnected. so without saying anything i haven't said before on the site - sure, there may well be gluten sensitivity and pancreatic insufficiency issues and if so, then we can ask WHY? re celiac illness i'll repost this study excerpt from earlier in this topic:

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

as i said before, these patients are deficient at diagnosis but you don't hear about anyone doing something specific and targeted about it. sources have proposed 0.90mmol/L and 0.95 mmol/L as a lower cutoff for serum magnesium. healthy controls have average levels as high as 1.1 mmol/L. and a serum zinc level of 11 is outright deficient by some standards while healthy controls more often have levels in the upper teens.

going gluten free does not make a mag and zinc poor diet better. it just takes away the depleting effect of gluten digestion. if people top up their total food intake with zinc and magnesium rich alternatives, great. but if not, i wouldn't expect them to do that much better. a little better sure, but not a lot better.

re the pancreas, i posted this on mar 30:
http://www.thisisms.com/forum/undiagnos ... ml#p223309
also, re
my personal suspicion is that gluten sensitivity, excess insulin, and resulting insulin resistance are players in many MS (or "neurological") symptoms.
from where i sit all our various perspectives are pretty interconnected, eg:
Is Serum Zinc Associated with Pancreatic Beta Cell Function and Insulin Sensitivity in Pre-Diabetic and Normal Individuals? Findings from the Hunter Community Study
http://www.plosone.org/article/info%3Ad ... ne.0083944
"Beta cell function, insulin sensitivity and insulin resistance were calculated ... higher serum zinc concentration was associated with increased insulin sensitivity (p = 0.01) in the prediabetic group."
organs need nutrients to function, period. taking nutrient removal to the extreme, consider: "Thus, after periods of starvation, the loss of body protein affects the function of important organs, and death results, even if there are still fat reserves left unused ... The ultimate cause of death is, in general, cardiac arrhythmia or cardiac arrest brought on by tissue degradation and electrolyte imbalances."

so. do you have gluten and or pancreas issues? could well be. i consider each of them likely indicators of underlying nutritional problems that should be addressed first to see how much of the problem disappears.
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Lorielynnjackson
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Re: My Drs are baffled

Post by Lorielynnjackson »

Hi Jimmylegs and Lyndacarol,
Thank you both for your advice and kind words. I don't mean to put anybody on the spot, in fact I highly suspect you are both correct. I really do appreciate all the thoughts and time you have taken to try to help me, and help point my drs in the right direction. I have not put any responsibility on anyone, am only very alexia give of any information that might lead the drs to a diagnosis. Apologies if I have offended anyone or put anyone on the spot. This was not my intention. Thanks much,
Lorie
Lorielynnjackson
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Re: My Drs are baffled

Post by Lorielynnjackson »

P.s. Lyndacarol, your hypothesis is not too unconventional I have heard this mentioned somewhere before, and jimmy you are correct. I suspect if there are nutrition issues it may be amplifying an existing problem and symptoms. Both of your ideas I have suggested to Drs already to open up more room for ideas, thank you again for brainstorming with me.
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lyndacarol
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Re: My Drs are baffled

Post by lyndacarol »

Lorielynnjackson wrote:P.s. Lyndacarol, your hypothesis is not too unconventional I have heard this mentioned somewhere before, and jimmy you are correct. I suspect if there are nutrition issues it may be amplifying an existing problem and symptoms. Both of your ideas I have suggested to Drs already to open up more room for ideas, thank you again for brainstorming with me.
That's it! Lorie, you have stated it very succinctly: we are a group of friends "brainstorming" together "to open up room for more ideas."
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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jimmylegs
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Re: My Drs are baffled

Post by jimmylegs »

no problem :) just be aware that poor nutrition can *cause* health problems up to and including death, not just exacerbate or amplify them. and also in many cases you need to be high normal when testing nutrient status - never take 'it's normal' for an answer! :)
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emktrx
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Re: My Drs are baffled

Post by emktrx »

With multiple hospitalizations, HAI (hospital acquired infections) always need to be ruled out. Regular visits with a good general practioner to do extensive blood work may be of help. Some symptoms may be related to the Rx you are on (birth control pills can cause tachycardia, blood clots, etc.) Adequate sleep, weight control and exercise are always legitimate starts when feeling out of sorts. Best of luck and prayers!
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