Three Doctors and a Nurse Practitioner Later....

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

Re: Three Doctors and a Nurse Practitioner Later....

Postby jimmylegs » Sun Apr 13, 2014 6:16 pm

yep you could certainly have a variety of nutritional deficits contributing to your various kinds of pain... and recall that lack of response to d3 from sun when cofactors are missing... at least if you are able to correct the magnesium issue, that alone should help boost your d3 levels. a win win!
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: Three Doctors and a Nurse Practitioner Later....

Postby Alainaluvsu » Fri May 16, 2014 1:16 am

I had my MRI and EMG / nerve conduction test. While the real results are unknown to me, the tech who did the EMG told me that my PNS was responding perfectly, but he told me to "expect a lot more testing in your future". I have no idea what that means. When I asked if this ruled out a pinched nerve, he told me "You don't have any pinched nerves coming out of your spine, but this doesn't tell us if you have any pinched nerves in your spine".

The comment about "expecting a lot more testing" sounds like something isn't quite right. I'll go on to say I'm glad that's out of the way. That ruled out quite a bit and I don't want another one of those tests again!! The needle part of it HURT in a couple spots (like the bicep and calf).
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Re: Three Doctors and a Nurse Practitioner Later....

Postby lyndacarol » Fri May 16, 2014 8:13 am

Alainaluvsu wrote:I had my MRI and EMG / nerve conduction test. While the real results are unknown to me, the tech who did the EMG told me that my PNS was responding perfectly, but he told me to "expect a lot more testing in your future". I have no idea what that means. When I asked if this ruled out a pinched nerve, he told me "You don't have any pinched nerves coming out of your spine, but this doesn't tell us if you have any pinched nerves in your spine".

The comment about "expecting a lot more testing" sounds like something isn't quite right. I'll go on to say I'm glad that's out of the way. That ruled out quite a bit and I don't want another one of those tests again!! The needle part of it HURT in a couple spots (like the bicep and calf).

I make quite the opposite interpretation: if everything appeared to be perfectly normal to the tech, he might be saying you need more testing in order to find the cause of your symptoms.
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Re: Three Doctors and a Nurse Practitioner Later....

Postby lyndacarol » Fri May 16, 2014 9:27 am

In reviewing this thread and your symptoms (particularly the tachycardia), Alaina, it seems logical to me to rule out a B12 deficiency.

Why was the GP's first question, "Have you had a workup for MS?" I think a thorough "workup" for a B12 deficiency is a more logical first step. Your serum B12 result was 483 pg/mL ("normal" but still below the 550 cutoff recommended by authors Pacholok and Stuart in their book, Could It Be B12?). Were you taking a multivitamin containing B12 or a B complex supplement before the blood test? What were the results for the other tests used to determine a B12 deficiency in the blood? The serum folic acid test result? The serum homocysteine test result? The urinary methylmalonic acid (MMA) test result? If your nurse practitioner was willing to prescribe "Savella 3 days ago just to see if it works," someone on your medical team should be willing to try a therapeutic treatment of B12 injections as a diagnostic tool to see if you have a B12 deficiency in the tissues.


"Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."
Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide


In evaluating the reader's risk, Pacholok/Stuart ask (page 189):
"Do you experience a "pins and needles" feeling or suffer from numbness or burning in your feet, hands, legs, and/or arms?"
"Do you suffer from weakness in your arms and/or legs?"
"Do you experience lightheadedness or dizziness?"
"Do you have a tremor?"
"Do you suffer from urinary incontinence?"
"Do you have a visual impairment, visual loss,…?"
"Do you suffer from tinnitus (ringing in the ears)?" Might this include your ear issues, Alaina?

There are many more questions in their self test, page 189 through page 192 – I encourage you to find their book.
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Re: Three Doctors and a Nurse Practitioner Later....

Postby Alainaluvsu » Fri May 16, 2014 2:47 pm

I was fasting for at least 14 hours before taking the B12 test. 483 is nowhere near a level that would cause the number of symptoms that I'm having, especially considering I fasted for such a long time. I do not take B12 supplements.

An update: they found an 11 mm preventricular malformation adjacent to the last anterior horn. No clear feed or drain respecting the malformation was found. This may represent a slow flow vascular malformation. Multiple Sclerosis lesions were not found. They're recommending another MRI in a few months to follow up, and I'm being referred to a neurologist pending my primary reviewing the specifics of the EMG. I've not done any research, if anybody knows anything about these, your information would be helpful.
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Re: Three Doctors and a Nurse Practitioner Later....

Postby jimmylegs » Fri May 16, 2014 3:11 pm

hi again alaina :)

wondering if you were able to get a nice soluble form of magnesium to work with, and if they had done any more recent follow up testing?
here's some interesting info from an ongoing discussion elsewhere on the site, looking at mag and d3 interactions:

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14805-765.html#p224934
Determinants of vitamin D status in patients with hip fracture and in elderly control subjects13
http://ajcn.nutrition.org/content/46/6/1005.full.pdf
Sunshine score and dietary and biochemical data from 125 patients with hip fracture and from 74 elderly control subjects
............................................control subjects...........patients
Vitamin D intake (IU/d).....................114 ± 44...........116 ± 63
Magnesium (mmol/L).......................0.82 ± 0.07........0.76 ± 0. 12
25-hydroxyvitamin D (nmol/L)...........32.9 ± 13.6........18.5 ± 10.6

l,25-dihydroxyvitamin D (pmal/L)........105 ± 31..............79 ± 46

teasing out the 'sunshine score' element of this article, i note the following with interest:

control subjects with low sunshine scores have serum 25(OH)vitd3 levels averaging 24.3 ± 9.1 nmol/L, while patients with similarly low sunshine scores have MUCH lower serum 25(OH)vitD3 levels, averaging 13.3 ± 5.7 nmol/L... this despite the patients having slightly higher average vit d3 intake overall. the dynamic is repeated when you compare patients and controls with intermediate and high sunshine scores.
so, fibro dx or no, it's certainly looking plausible that the magnesium issue would be causing related trouble with d3 status, regardless of sunshine exposure. probably worth checking out if you get the opportunity to do so.
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: Three Doctors and a Nurse Practitioner Later....

Postby Alainaluvsu » Fri May 16, 2014 3:22 pm

It's not looking like fibro, nutritional deficiency, or MS. Read the above post :)
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Re: Three Doctors and a Nurse Practitioner Later....

Postby jimmylegs » Fri May 16, 2014 3:58 pm

regarding the malformation question, i ran a google scholar search on
periventricular malformation congenital
and this was the first result: Congenital malformations of the central nervous system in rats produced by maternal zinc deficiency

i recalled coming across that study previously:

regimens-f22/topic2489-405.html#p195460
Congenital Malformations Resulting from Zinc Deficiency in Rats
http://ebm.rsmjournals.com/content/123/3/692.abstract
A mild but specific zinc deficiency was produced in female rats by the use of a purified diet lacking the element and by stringent elimination of sources of zinc contamination from the environment. 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. The fetuses from zinc-deficient females contained less zinc than did their controls, suggesting that the congenital anomalies resulted from a direct effect of lack of zinc in the fetal tissues.

Congenital malformations of the central nervous system in rats produced by maternal zinc deficiency
http://onlinelibrary.wiley.com/doi/10.1 ... 7/abstract
Teratogenic effects of maternal zinc deficiency in rats have been observed, confirming previous reports. The deficient diet differed in several respects from that used by Hurley and coworkers but the results were essentially the same. Special attention was given to malformations of the central nervous system and to tissue anomalies not recognizable by gross inspection of the fetuses.
the first article mentions the periventricular area but i don't have access to full text for articles in that particular journal.[/quote]

added zinc to the search terms and came up with this - fascinating:
Zinc metabolism in normal and zinc-deficient rat brain
http://www.sciencedirect.com/science/ar ... 8684901663
"In general, turnover was most rapid in periventricular regions..." the rest of the abstract describes generally slow response to zinc supplementation in replete subjects, and increased uptake in zinc deficient subjects.

i wish there was more research along these lines, and in human subjects. the three studies above span three decades and the newest of them is thirty years old.

found this more general info:
History of Zinc as Related to Brain Function
http://nutrition.highwire.org/content/130/2/496S.short
"Hambidge et al. (1975) reviewed the effects of inadequately treated maternal acrodermatitis enteropathica (JL comment: this condition is linked with zinc deficiency) on offspring. Some infants had brain malformations. Related to these observations, reports from Turkey suggested that low maternal Zn nutriture increased the occurrence of fetal anencephaly (C¸ avdar et al. 1983 and 1988)."
i've seen this one before: "nearly three decades ago, Jameson (1976) found significantly higher maternal serum Zn concentrations among women who normally delivered mature infants than he found among women who had abnormal deliveries and/or abnormally developed infants. In the latter group, eight infants had congenital malformations."
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: Three Doctors and a Nurse Practitioner Later....

Postby jimmylegs » Fri May 16, 2014 4:00 pm

re "It's not looking like fibro, nutritional deficiency, or MS. Read the above post" yep i had seen that the b12 level was approaching acceptable levels when we discussed it before. but with a magnesium issue on the record, i'm surprised that you are tending to rule out nutritional issues. also, i said 'fibro dx or no' above. i only referenced fibro in that post at all b/c we had discussed earlier.
i'm still wondering if you were able to get a nice soluble form of magnesium to work with, and if they had done any more recent follow up testing?
here's one potential option to consider: http://www.vitaminshoppe.com/p/kal-magn ... 3aaO_ldWt8
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: Three Doctors and a Nurse Practitioner Later....

Postby Alainaluvsu » Fri May 16, 2014 9:54 pm

My mother smoked when she was pregnant with me. She's admitted that much. So a zinc deficiency when she was pregnant with me is possible. I've not followed up on it, because I don't have a job and I don't have spare money to spend on $20 magnesium supplements. The only reason I'm having tests performed is because Medicaid pays for them. As much sunlight as I get, Vitamin D deficiency is stretching it. Saying B12 is too low and causing issues is just not something I'll be willing to believe when it's in the high 400s. In fact, I have a hard time believing nearly any deficiency is in order due to the symptoms being (mostly) unilateral to the right side.

I do appreciate the information and I'm taking it all to heart, but I have absolutely 0 resources to help myself with vitamins outside of the diet I can get from my roommate helping me with food. If I could, yes, I would get a decent Magnesium supplement just in case, and load up on B12 just in case, and load up on whatever, just in case. I have been eating more peanut butter lately... That's about all I can really do.

Now that I have been told to have a malformation in my brain, I'm really focused on that and any information I can get. It's not an AVM (thankfully), which there's PLENTY of info on the web on. A malformation does seem very likely given the rare EXTREME sharp yet brief pains in my right temple I get from time to time.
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Re: Three Doctors and a Nurse Practitioner Later....

Postby jimmylegs » Sat May 17, 2014 8:16 am

smoking is a known contributor to zinc deficit for sure. addiction sucks.

given that mag supplements are not an option, perhaps you can make some adjustments at the grocery store. http://www.whfoods.com/genpage.php?tnam ... #foodchart recall, aim for 600mg per day when symptomatic.

there could be potential to increase nutrient density from diet by re-allocating some spending dollars...

for example if you can cut back on wheat consumption, it will help you retain essential nutrients from other foods. also, if you eat rice, you could choose brown rice over white. FAR more nutritious. when you eat spinach, you could combine with something like red pepper (better source of vit C than orange juice) to help absorb the iron. and so on.

re vit d3, you could sit naked in the sun all day and without magnesium in the mix, you would still be low in vit d3 compared to those with adequate mag.

i used to get sharp stabbing pains in my head and elsewhere before i sorted out my nutrition issues. it's nice that those are a thing of the past.

glad to hear you have a helpful roommate :) as for the brain malformation, i'm interested in the possibility of acquired vs congenital origin.

this document doesn't cover your scenario exactly, but i was still interested to read some of the info
http://c.ymcdn.com/sites/www.aocr.org/r ... _allow.pdf
'The adult form typically presents in middle-aged to older patients and is thought to be secondary to dural sinus thrombosis resulting from trauma or inflammation, but the etiology is not completely understood. One of the proposed etiologies involves 3 steps: 1) initial thrombosis of a dural sinus leading to impaired venous drainage and increased sinus pressure; 2) secondary dilatation of physiologic shunts between the thrombosed sinus and arterial structures (typically extracranial); 3)
recanalization of the thrombosed sinus allowing for direct arterial shunting into the sinus.'

if inflammation and/or thrombosis did have anything to do with your situation, correcting low magnesium would help with both.

Low magnesium promotes endothelial cell dysfunction: implications for atherosclerosis, inflammation and thrombosis
http://www.sciencedirect.com/science/ar ... 3904000067
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: Three Doctors and a Nurse Practitioner Later....

Postby lyndacarol » Sat May 17, 2014 9:03 am

Alainaluvsu wrote:...Saying B12 is too low and causing issues is just not something I'll be willing to believe when it's in the high 400s. In fact, I have a hard time believing nearly any deficiency is in order due to the symptoms being (mostly) unilateral to the right side.

...If I could, yes, I would get a decent Magnesium supplement just in case, and load up on B12 just in case, and load up on whatever, just in case. I have been eating more peanut butter lately... That's about all I can really do.


I think I may have been misunderstood, Alaina. I was not advocating that you "load up on B12 just in case." I thought that IF you were taking a B12 supplement that could have disguised a deficiency and might explain why your serum B12 level was 483 pg/mL. The standard range at most labs considers your number to be "normal." I only point out that authors Pacholok and Stuart think that 200-550 is a "gray zone" and that labs have their deficiency cutoff set too low. (In fact, the authors think a person with neurologic symptoms should be aiming for 1000 pg/mL.)
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Re: Three Doctors and a Nurse Practitioner Later....

Postby Alainaluvsu » Thu May 22, 2014 4:20 pm

I do not take B12 supplements.

These are my official results that I got today from my MRI:

"Findings
Morphologically, the brain appears nomral.
There is no evidence of hemorrhage, hydrocephalus, acute infarct or mass effect.
There is an 11 x 7 mm ill defined, enhancing periventricular focus adjacent to the left anterior horn. This demonstrates T2 and T2 FLAIR hyperintensity, T2 gradient hypointensity and is isointense / not visualized on T1. There are no clear feeding or draining vessels identified.
The major intracranial flow voids are present.
The sinuses and mastoid air cells appear clear. There is right-sided nasal mucosal inflammation, likely physiologic.
The globes and orbits appear within normal limits.
Soft tissues of the head and face are grossly normal in appearance.
The calvarium appears normal.

"Impression
There is an 11 mm ill defined, enhancing periventricular mass adjacent to the left anterior horn. This may represent a slow flow vascular malformation.
Demylinating or inflammatory lesions are less likely. Correlation with patient history and symptoms is recommended. Followup pre- and post-contrast MR brain in 6 months is recommended to assess stability/change."

It seems to me they're leaning towards a vascular malformation, more so than MS. But they are not sure. Maybe the MRI is to see if any new lesions pop up. Sigh... I guess we'll see. I hope I can see a neurologist soon. I will say I think the spine is a better place to look, because I often feel more discomfort there than in the brain. It's like somebody shoved their thumb in a certain part of my spine really hard (T5 area). That discomfort has moved to the Cervical area and caused a numbing feeling in my chest on occasion, but it's almost always in my T5 area.
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Re: Three Doctors and a Nurse Practitioner Later....

Postby jimmylegs » Fri May 23, 2014 1:05 am

the only vascular stuff i can recall from my early mri reports, involved mention of hemangioma. i have a couple cherry angiomas on my skin as well and my family doc said it was normal aging. not sure i agree, but i didn't really have much luck finding out about it when i first looked into possible causes.

interesting:
Current management of hemangiomas and vascular malformations
http://www.sciencedirect.com/science/ar ... 980400077X
Vascular malformations, while essentially structural disorders, can demonstrate endothelial hyperplasia, possibly triggered by clotting, ischemia, embolization, partial resection, or hormonal influences.

mag could have a role in addressing some of those possible triggers.
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: Three Doctors and a Nurse Practitioner Later....

Postby Alainaluvsu » Fri May 23, 2014 5:40 am

Hemangiomas of the brain generally occur lower in the brain (brain stem, cerebellum) or meninges. The "mass" was found in the frontal lobe. The MRI does not find any evidence of hemorrhage, stroke, or mass effect. My TBC all indicates normal with the exception of my WBC, which with the MRI reading showing nasal mucosal inflammation ("likely physiologic") may be the cause of. This indicates that no bleeding has occurred and no growth of mass has happened to apply pressure in the brain. No acute infarct was noted, indicating that my brain is receiving adequate supplies of blood. Since my O2 levels were 99+ on my tests, it's safe to rule out ischemia. I have had no embolization or resection treatments in my brain. My TSH levels were in normal range (.7 something), and the last time I've checked (November) E2 was normal for whatever part of my cycle was, and testosterone was like 20 ng/dl.
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