Jimmy Legs Help ME!!!!!! thanks

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Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Sat Nov 23, 2013 3:15 am

Jimmmy legs where are you? Need your advice. And also to anyone else that knows about this stuff. I went to a neurologist for the muscle twitching that I've had about 7 months now, along with a feeling like the muscles in my cheeks are being pulled back towards my ears, and chest pressure/feeling like I can't get enough oxygen a lot. I started taking Gaviscon a few weeks ago cause I thought maybe reflux, amazingly, it held down a lot of the twitching, and there is magnesium in gaviscon. SO i started taking 1 mag oxide once per day for about 2 weeks now and the twitching is getting less and less. Still have it, but not as bad. Also, you can't see the twitching, only I can feel it. It's in my face, thumbs, arms, hips, spine, back, knees. BUt mostly eyebrows, eyelids, around my mouth, and my thumbs and back are the hotspots. ANyways, I went to neurologist. He said i have hyperreflexia. EMG was normal. So being that my dad, my aunt, and my cousin have MS he wants MRI of brain and c spine, although he totally thinks it will be normal, and so do i. I don't even want to get it because the copay is $300 and i have a feeling it will be normal. He also ordered labs. Surprisingly, the mag range was 1.8 to 2.9 and my result was 1.9. So it's in range but low, and that's with taking the magnesium supplement, so i wonder if it was out of range low before i started taking the supplement and that;s my whole problem right there. He ordered CBC and differential, and that's normal, except again my neutrophils are low and my lymphocytes are high, and it's been like that for like 2 years now, not sure why, but i wonder if i have cyclic chronic neutropenia? My CMP... my eGFR was 57! that's low and i wonder if something is going on with my kidneys. But my BUN and Creatinine are normal. My creatinine is in range but high in range at 1.0... a few months back it was 1.1 and that was out of range. So i wonder if something is possibly going on with my kidneys, because magnesium and calcium i think are filtered through tthe tubules or something of the kidneys. Like maybe the twiching is from an acidosis? like renal tubular acidosis? I have no clue. Not all my labs are back yet. He also is checking for lymes, acetocholine stuff (myasthenia gravis). He also checked CPK and that was normal, negative Sjogrens, negative lupus, normal ANA. I think he just ordered those tests cause my sister has lupus and we have strong family hx weird autoimmune disorders in like everyone in my family. What the heck does all this mean? ALso, if something is going on with my kidneys, (which if it was, i guess it would be beginning stages cause creatinine is normal) should i stop taking the magnesium right now, cause i read don't take stuff if you have kidney disease without checking with doctor first. Also, my eGFR just 2 months ago was normal at 88, so why did it drastically drop so low in just 2 months to 57? I am 35, causasian female, fit, normal BMI, no hypertension, no diabetes, no other conditions, and my only symptom is twitching. HELP!
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Sat Nov 23, 2013 3:35 am

PS. I wonder if what I eat is harming my kidneys.... I eat a lot of spinach, broccoli, sweet potatoes, green beans, cheddar cheese, whole milk, fortified cereals, about a lb of meat every day (lean chicken or wild fish), beef once a week, pork twice per week, eggs, carrots, basically i eat a ton of vegetables all day long and stuff high in protein. I don;t look muscular and I am not a bodybuilder, I am just nicely fit. Also, I notice on days i eat more protein and less starch/carbs, my breathing is worse (not really breathing, just the feeling like I can't get in enough air).
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby jimmylegs » Sat Nov 23, 2013 6:41 am

hey you got a mag result, that is great news! "Surprisingly, the mag range was 1.8 to 2.9 and my result was 1.9." I will assume the units are mg/dL.

the bottom of that range AND your result are both TERRIBLE NUMBERS. in mmol/L, the bottom of the range is only 0.74 and your result was 0.78.
in your units, to match healthy controls, you need to go for more like 2.6-2.7 mg/dL. !

you NEED MORE MAGNESIUM and magnesium oxide is one of the least soluble, least absorbable products out there. so, order yourself some magnesium glycinate today. or even magnesium citrate. personally, I use both. find some magnesium sulfate crystals (Epsom salts) or magnesium chloride flakes and mix yourself up a bath to soak in. or a make up a batch of topical 'oil' (dissolve a cup of mag chloride flakes in a cup of water, apply topically).

the feeling that you can't get enough air is something I experienced when I was really low in magnesium. you can't fill your lungs to the 'stretch' feeling am I right? I think among other things that indicates spastic diaphragm.

high phosphorus foods (eg pop) are one of many things that can interfere with your magnesium status. meat protein would be in the higher phosphorus category. i'd say keep an eye on your phosphorus intake until you can get your magnesium status sorted. and be prepared for a looong haul.. in my own experience, it takes FOREVER to get out of a deep magnesium deficit hole.

fyi.. low magnesium status can be associated with poor renal outcomes:
http://www.ncbi.nlm.nih.gov/pubmed/19356369

would be good to reassess kidney numbers after correcting magnesium status. oh and btw I have seen low phosphorus diets recommended for people with kidney disorders. so it would appear that the magnesium phosphorus balance is a pretty important one :)
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Sat Nov 23, 2013 7:40 am

Ok thank you so much!!! i have been checking all morning waiting for your reply, lol, thanks for getting back so fast!!!! Yes, that breathing feeling, that is exactly what i experience, like it feels like when i want to take in a deep breath i can't expand fully because it feels like an elephant is stepping on your chest and i feel like i am starving for oxygen! You know what else is weird, too, is for about a year now, I have been feeling a little confused, not confused, just weird, like not myself. And the magnesium is making that feeling go away. Like I would do really really stupid things that were starting to get a little concerning, like forgetting my pin number when i go to pay for stuff in the checkout line, or one phone rings, and i pick up a wrong phone, or all of a sudden i can't remember my password to log on at work even though i use it every day, i went through a couple stop signs without even realizing it, or i go to call someone at work and i dial the number on my keyboard, or i go to say something and it just comes out all jumbled up. ANd since ive been taking the magnesium I am sleeping better, and able to get in a deep sleep where I dream, and i haven't had dreams in years. Also, i don't think I clench my jaw as much either. I haven't talked to the neurologist yet cause not all the labs are back. I have access to see my bloodwork cause i work in a hospital. I asked the one doc i work with about the mag thing, and he said, well we often see that in patients with celiac disease because they can't absorb it in the small bowel. ON my egd, i had the duodenal IELS which usually means celiac, but my celiac panel is negative, so it is impossible that i have celiac. But i could have unknown malabsorptive disorder of unknown cause, or it could be small bowel bacterial overgrowth (that's a motility issue, it's when the muscles/nerves dont tell the intestine to contract normally so then bacteria accidentally ferments and overgrows in the small bowel and destroys the villi so then you can't absorb stuff). I have a hydrogen breath test scheduled later on next week to check that out. But also, magnesium is i think filtered through the tubules of your kidneys. So for me, could it be small bowel or now a kidny thing not allowing me to absorb magnesium? i don't know. Ill let you know the results of my SIBO test, and Ill let u know what the neuro says, and thank you so much! I feel frustrated and kind of lost, because I have odd problems that no one seems to understand really because they are not common and even a lot of docs don't know... I've only come across a few doctors that actually don't just tell me "well you have very unique problems. I just don't know.". That is what my PCP told me, and I am done with him. THanks so much!!!!
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby jimmylegs » Sat Nov 23, 2013 8:12 am

hey you are welcome :)

glad you are noticing improvements! even with your levels still being so low, that's a good sign :) the improved sleep and reduced jaw clenching would be consistent with an improvement in magnesium status. I shudder to think what your levels must have been before.

I feel SO SORRY for people who go to labs like my local one, which has a lower end on its range of 0.65 mmol/L (or 1.6 mg/dL!) - how misleading and contrary to the pursuit of health >:\

as for the SIBO, yes the mag issues (at least in part the muscle function / motility aspect) could be linked to that.
recall the start of this post: undiagnosed-f54/topic23270.html#p217231

for a mutual underlying situation linking SIBO and magnesium deficit, I would revisit the zinc aspect we discussed before:
see the end of this post (same one as above): undiagnosed-f54/topic23270.html#p217231

if you can get a serum zinc test (or do the D-I-Y zinc taste test) that would be the next piece of the puzzle.
recall the details provided here: undiagnosed-f54/topic23270.html#p217030

low zinc status increases risk of infection, AND reduces intestinal membrane integrity, AND impairs magnesium absorption and retention.

worth checking out!
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Mon Nov 25, 2013 12:58 pm

so guess what? the plot thickens even more. My Lyme Ab total w/reflex WB came back equivocol (meaning not negative not positive) so they will have to order western blot as next step I am assuming to rule out lymes disease... and if it is lymes, i will be glad cause it's an easy fix but really mad because i brought this up months ago to my PCP and he basically laughed at me and wanted to prescribe me benzos saying "im probably just stressed out" and i kept saying NO I AM NOT STRESSED. You just know when something is not right in your own body. And if i have permanent nerve damage from this i am gonna be really mad at him. He is the one i also asked to check my magnesium level and he didn't. On my lab it has a note saying cross-reactivity with treponemal, rickettsial, and viral disease has been reported) i guess that would be the differential if the lymes western blot comes back negative. ANd also i told my PCP i thought i had some bacterial infection in my CNS a while ago and he didn't believe me and i said that because of my symptoms and the rash i had going down my spine (and rashes that follow nerve pathways usually mean infection of the nervous system). Still waiting for my other labs to come back but that's where Im at now...
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby grandsons4 » Mon Nov 25, 2013 5:33 pm

LLL3885, hi: A negative result on a Western blot does not mean they can rule out Lyme disease. My adult son was diagnosed with MS in early 2013, in part due to a negative (as far as the CDC is concerned) Western blot, even though some bands associated with the bacteria that causes Lyme were present. He ultimately had his blood tested by a company called Igenex, reputed to be the place to go. The results of those tests indicate he very likely has Lyme, and he is currently being treated with antibiotics. Too soon to know their effectiveness, however.
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Tue Nov 26, 2013 4:18 am

thanks for your reply! I am just so glad that finally after a year of feeling like roadkill finally I am going to get some answers. The worst feeling is when you don't feel well, and doctors don't help, so then you feel helpless because if you can't talk to your doctor then who do you go to? I thought i just had to live with my weird problems forever and maybe it was just because I was getting older, but something was just not right. ANd i have had other testing which means "something" but it is always non-specific so I never can get an answer, and multiple doctors have just told me "I don't know". My other irregular testing: Upper endoscopy, biopsy shows Duodenal IELS and mild crypt hyperplasia, negative H pylori. That can be indicative of celiac disease, autoimmune disease, or infection. Celiac panel was negative so i never got an answer. On my CBC with diff, for the past year or 2, my neutrophils are always low and my lymphocytes are always high but WBC is normal. Last january, i was sick for a month, and atypical lymph was 5% and rheumatoid factor slightly elevated. ANA negative, ESR negative... so i was told you have some viral thing. MONO spot test negative, and I already had EBV as a teen. I read at 5% that can be indicative of babesiosis, malaria, and i think west nile virus. Then i had this weird rash for about 2 months on my shoulders, chest, back going down spine... it looked exactly like a ricksettialpox rash... and that is in the differential with the equivocal lymes result. I went to dermatologist and he just looked at me, didn't do a biospy, but said it's folliculitis and called in a cream. But i never used the cream because the rash magically disapeared on its own. I have had fasciculations in my whole body for 7 months now, along with joint pain in my hips and knees (sometimes other spots like neck and beck, shoulder blades, fingers) but never any redness or swelling. I think all this is pointing to either a tick borne illness or a mosquito illness, something along those lines. Oh, about 10 years ago i went to mexico on vacation and came back with amebiasis... so i have had weird infections before. I just think all this is pointing to not an autoimmune disorder, but an infection of some kind. Also, i read babesiosis can affect the renal tubules and cause an acidosis, which would cause twitching... and my recent eGFR was 57, but BUN and Creatinine are normal.. and the gfr measure how well the renal tubules filter stuff out of your system. I just think this is all adding up to infection of some kind... i will keep you all posted... but i probably would have never found this out had i not pushed and pushed for answers. Ive been to a lot of doctors and had a lot of testing and they were all missing the simple fact that this could just be an infection. Instead, they all wanted to say "oh you are a working mom, you are probably just stressed out and fatigued from that" and I would not except that. It takes a lot to get me down.
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby lyndacarol » Tue Nov 26, 2013 8:54 am

LLL3885, currently I am fixated on celiac disease. I am glad you had the upper endoscopy and biopsy, but it is possible that the one spot examined was not the best example of what is going on. Likewise, the celiac panel can be negative, but the patient can still have non-celiac gluten sensitivity – perhaps you?

By the way, what exactly did your celiac panel entail? Some physicians might want to take only one or two blood tests, but the celiac disease center at Columbia University recommends the following set to maximize the chance of getting accurate results:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

As you know, these blood tests must be taken when the patient has not been on a gluten-free diet; the tests measure the patient's reaction (or lack of reaction) to gluten in the diet. (The longer a patient has been gluten-free, the less chance there is of measuring anything and getting useful results.) I assume you were not following a gluten-free diet before the blood tests.

Have you and your physician considered a mannitol-lactulose test to rule out "Leaky Gut" (a.k.a. increased Intestinal Permeability)?

I have heard that some doctors encourage testing for HLA DQ2 and DQ8, which others say is not accurate or useful.

I admire your persistence. You know when something is not right in your body! All the best to you.
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby lyndacarol » Tue Nov 26, 2013 3:15 pm

Livelaughlove3885 wrote:...My other irregular testing: Upper endoscopy, biopsy shows Duodenal IELS and mild crypt hyperplasia, negative H pylori. That can be indicative of celiac disease, autoimmune disease, or infection. Celiac panel was negative so i never got an answer. On my CBC with diff, for the past year or 2, my neutrophils are always low and my lymphocytes are always high but WBC is normal.


I hope the celiac disease/gluten sensitivity angle has been checked out thoroughly:

http://sklad.cumc.columbia.edu/celiacdi ... demiology/

...The recognition of specific lymphocyte markers on intraepithelial lymphocytes (IEL) has allowed the definition of normal or typical celiac disease from refractory celiac disease that may have a poor prognosis. Refractory celiac disease may be divided into two categories based on these lymphocyte markers: Type I has normal lymphocyte markers. These patients while sick usually respond to various medications that include steroids or immunosupressants. They do not go on to develop lymphoma....
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Sat Nov 30, 2013 4:27 am

Update! So the neurologist says I am negative Lymes, as my test was "equivocal" and the only band positive was 66, except he didn't tell me that, i only know that because I have access to see my bloodwork. I have to agree with him... according to guidelines, you need to have so many bands be positive and certain bands are more likely than others to mean lymes. Band 66 is found in all bacteria, so it can be anything, really, though def not lymes. So all the neuro says is all my labs are normal, no lymes, no lupus, the only thing off was my kidney function indicating i am dehydrated (but I drink a ton of water and eat a lot of vegetables... but i think i do pee a lot and i am active... so i guess i need more. So then i felt really defeated and kind of upset because i feel like there is a missing piece to my puzzle that all these doctors are missing. So then the following day i went out to the city hospital and had the lactulose breath test to check for small bowel bacterial overgrowth. I won't get my results until next week, but i think it is positive. THe machine was a quintron breathtracker and on the display on the front it shows how much hydrogen and methane are being produced. Im not quite sure, but i think if you have hydrogen counts greater than 20 ppm over the baseline reading it is considered positive for SIBO. My counts went up to 30 ppm... i think my counts were highest around the 60 minute to 120 minute mark. Then the counts went back down to 14 and then close to the 3 hour mark it went back up to 25 i think so i think that means positive. Oh, and with the celiac bloodwork, i had genotype testing... I am negative DQ2 and DQ8 so it is impossible that i have celiac disease without those genes. Several docs have told me i may just be gluten sensitive, and i am just not buying that. I keep saying, then why i am i fine with gluten products that are low in sugar, but gluten products high in sugar and things with lots of sugar or dextrose or HFCS is what bothers me. I keep telling them i think either i am lacking an enzyme that breaks down sugar, or i have bacterial overgrowth and that is why i had the duodenal lymphocytosis. I had to push and push for this SIBO test... all my other labs can be indicative of bacterial infection in my opinion... so i think this just all fits together...
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby jimmylegs » Sat Nov 30, 2013 7:38 am

lots of news! nice to have some answers.

i'll be very interested to see a serum zinc result. strong ties to controlling bacterial overgrowth, infection rates, gluten sensitivity, glucose handling, and capacity to synthesize over 300 different enzymes.
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby Livelaughlove3885 » Sat Dec 07, 2013 6:58 pm

My test came back positive for small bowel bacterial overgrowth
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Re: Jimmy Legs Help ME!!!!!! thanks

Postby jimmylegs » Sat Dec 07, 2013 8:28 pm

hello! all right, information!! another piece of the puzzle. remind me - where are we at with zinc testing? were you looking at having to do the DIY home game version? or do you have a serum test result pending? i'm *this* close to considering the bacterial overgrowth conclusive enough re poor zinc status. but would much rather have a direct test.
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