In the process of finding a diagnosis

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

In the process of finding a diagnosis

Postby MelissaAndrews » Thu Mar 16, 2017 8:19 pm

10 years ago, I had an "episode" that lasted a couple months. I struggled with dizziness, stumbling, and muscle twitching. It was diagnosed as anxiety, possibly pesticide poisoning, since nothing showed up on an MRI.

Between this time, and up until early last year, my left knee started occasionally going out from under me as I walk, and my right foot sometimes drags when I least expect it causing me to stumble. I choke for no reason, sometimes drool, my face sags at times, and I have had tingling in my hands and feet. A few years ago, I developed a small blind spot on my right eye, which I still have.

This past November, I was having stomach pains for about two weeks. My doctor thought it was from my gallstones. I was in and out of the ER four times in two months with severe stomach and intestinal pain. Soon after this, I woke up and was having trouble keeping my balance. I felt like I was being pushed to the left. I couldn't drive until recently. I had double vision. My left eye isn't moving as fast as the right eye. The ophthalmologist sees no health problems with my eyes, and has no explanation for the blind spot.

Early 2015 I started having trouble swallowing on occasion, but since November, it has gotten worse. It feels as if I am pulling a muscle in my throat sometimes when I swallow or my throat muscles will not move at times, causing the choking. I have developed a numbness that radiates from the belly button, down over my crotch, and into my right leg. I also feel like water drops are hitting my legs at times. I drop things daily with my right hand, and have bad hip pain that makes it difficult to sleep and walk at times. I was struggling with severe digestive issues that caused me to drop 40 pounds. My food was digesting too fast, causing severe diarrhea. Then out of nowhere, constipation kicked in. The Gastroenterologist said that I was struggling with Dumping Syndrome, although I never had stomach surgery.

In December and January, I struggled with severe fatigue. I finally started coming out of it and feel like I am getting better, but the choking, slow eye, dropping things, and tingling hasn't gone away. My muscles tend to jerk when I am relaxed.

The doctor is looking for MS because it runs in the family. Thyroid, Diabetes, and bowel disease have been ruled out. Physically, my eyes are fine. So now I wait until I see the neurologist. My blood work is great, except I was slightly low on vitamin D. I eat organic foods, plenty of veggies, do not drink sodas, juices, or coffee. I drink dairy in the form of raw kefir. I am back to four miles a day on my walks, and although I still get tired mid-day, I no longer feel like I am dragging.

Anyways, that is my story. I do not know if I have MS or not. For all I know it could be a pinched nerve. I am clueless. Thankfully my next stop is the neurologist. Thanks for listening, or reading. :-D
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Re: In the process of finding a diagnosis

Postby lyndacarol » Fri Mar 17, 2017 7:14 am

MelissaAndrews wrote:My blood work is great, except I was slightly on vitamin D.
Welcome to ThisIsMS, Melissa (MelissaAndrews).

I am curious about your vitamin D test result. Will you share the actual number result with us? I am interested to know what your doctor considers "slightly low."
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Re: In the process of finding a diagnosis

Postby MelissaAndrews » Fri Mar 17, 2017 1:07 pm

lyndacarol wrote:
MelissaAndrews wrote:My blood work is great, except I was slightly on vitamin D.
Welcome to ThisIsMS, Melissa (MelissaAndrews).

I am curious about your vitamin D test result. Will you share the actual number result with us? I am interested to know what your doctor considers "slightly low."


Thanks for the welcome. :-D

I never received the numbers, he just called me and told me I was slightly low and to supplement. At the time, I didn't relate it to possible MS, so I just figured I would take supplements as directed without asking for numbers. The doctor told me to take 5,000 IU twice a day until my next work up, then cut down as directed. So 10,000 is my daily intake. I live in the Mojave Desert, and am outdoors a lot, so this really surprised me because I do not know how I could be deficient.
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Re: In the process of finding a diagnosis

Postby jimmylegs » Fri Mar 17, 2017 3:47 pm

hi melissa just chiming in to inquire whether you have access to updated testing for serum d3 and serum magnesium? if not via the doc via a lab service?

re low d3 in the mojave check this out - both the controls' and patients' serum magnesium numbers are 'normal' serum levels (and pretty universally low even in the controls). both groups have similar d3 intake from diet and sunshine. but the ones with higher mag have basically double the serum d3 levels. you can even see the effect of magnesium in the group with low sunshine score:
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
Serum Magnesium (mmol/L)......................0.82 ± 0.07........0.76 ± 0. 12
Serum 25-hydroxyvitamin D (nmol/L).........32.9 ± 13.6........18.5 ± 10.6
.....subgroup w low sunshine score............24.3 ± 9.1..........13.3 ± 5.7
Serum l,25-dihydroxyvitamin D (pmal/L)....105 ± 31............79 ± 46


mainstream docs don't seem to be paying attention to this dynamic yet. low d3 can be a simple consequence of low mag. adding d3 just uses up even more of your system's available mag, so that event higher d3 intakes are required for minimal serum level increases. pretty nasty little feedback loop.

at this point it sounds like your original d3 result is a 'nice to know' but not a 'need to know'. as with intakes, docs don't usually pay much attention to serum mag either so i'd be surprised if that had been tested. even if it had and it was 'normal' (a fraught term), you'd still want to be sure your status was on the high end before starting a high dose d3 regimen.

as i read your list of symptoms i noted many i've experienced in the past. many of these were issues of low magnesium, suffered when i was taking 4000 IU per day of vitamin d3 for a number of years (far far longer than any study of 'long term' . i was also taking daily magnesium, but in the wrong form, the wrong amount, and at the wrong timing to cope with the high daily d3 input. at the time i also hadn't quite dialled in how important it is to emphasize magnesium dense foods in diet.

a pharmacist let me know i was doing it all wrong and i backed off on the d3 and added more mag. the mag started to work on the second day. if i stopped taking mag or took vitamin d3, the symptoms would return. it took months before i could go a day without a magnesium pill and not feel the consequences. it's been the best part of a decade since i inflicted any high dose d3 on myself, but magnesium is a staple. i'll still take vitamin d3 and i still test my levels. but i have definitely learned my lesson where high dosing d3 is concerned.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: In the process of finding a diagnosis

Postby lyndacarol » Fri Mar 17, 2017 5:49 pm

MelissaAndrews wrote:I never received the numbers, he just called me and told me I was slightly low and to supplement. At the time, I didn't relate it to possible MS, so I just figured I would take supplements as directed without asking for numbers. The doctor told me to take 5,000 IU twice a day until my next work up, then cut down as directed. So 10,000 is my daily intake. I live in the Mojave Desert, and am outdoors a lot, so this really surprised me because I do not know how I could be deficient.
ANYONE can be vitamin D deficient. It would be a good idea if you could call his office and request a copy of your test result so that you have the actual numbers. The symptoms of vitamin D deficiency and the symptoms of MS are the same – vitamin D deficiency needs to be ruled out. (As a magnesium test should rule out a magnesium deficiency also, per jimmylegs) Both vitamin D and magnesium are often low in people with MS.

For vitamin D levels, most labs use the standard range of 30-100 ng/mL, recommended by the Institute of Medicine. Many experts now say that this range goes too low and actually includes D deficient patients.

The California-based GrassrootsHealth (http://www.GrassrootsHealth.net), which includes over 40 vitamin D experts, recommends that levels be at least 40-60 ng/mL. Their website contains lots of good information on vitamin D research.

Every person absorbs vitamin D at a different rate. You and a friend may swallow the same amount of IUs per day, but you may very well have different amounts in your blood. Testing is the only way to know your serum levels. After you have supplemented for 3-6 months, your doctor will probably test again to see if your vitamin D level has increased. GrassrootsHealth offers the following chart to calculate the dosage to try initially to raise your serum level from your beginning number to a more optimal level:

Change in Serum Level Based on Intake (IU/day) for 90% of Adults
http://grassrootshealth.net/media/images/chart-serum-level-intake-5-by-3-ngmla-both-charts-single.pdf
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Re: In the process of finding a diagnosis

Postby jimmylegs » Fri Mar 17, 2017 5:59 pm

hopefully they are also teamed up with some cofactor experts and don't gloss over interaction details when specifying target levels.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: In the process of finding a diagnosis

Postby lyndacarol » Sat Mar 18, 2017 9:05 am

jimmylegs wrote:hopefully they are also teamed up with some cofactor experts and don't gloss over interaction details when specifying target levels.
Certainly, Dr. Robert P Heaney, Creighton professor, long time director of GrassrootsHealth research, who died last year, was aware of cofactors, as I'm sure all the GrassrootsHealth experts are.

Guidelines for optimizing design and analysis of clinical studies of nutrient effects
Robert P Heaney, MD
https://academic.oup.com/nutritionrevie ... m=fulltext

Abstract
Presented here is a system to standardize clinical studies of nutrient effects, using nutrient-specific physiological criteria. These guidelines are based mainly on analysis of the typical sigmoid curve of biological response to nutrients and are intended for design, interpretation, and pooling of studies of nutrient effects. Five rules have been articulated for individual studies of nutrients, and six for systematic reviews and/or meta-analyses.
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Re: In the process of finding a diagnosis

Postby jimmylegs » Sat Mar 18, 2017 11:55 am

will be nice then when recognition of that complexity is regularly shared rather than just the much more prevalent isolated d3 soundbite. even nicer when more studies of these interactions have actually been done. the guidelines look very common sense and generic, at a glance not much to do with specific interactions. but they certainly address some of the most typical problems seen in nutrition research. hopefully enough researchers follow them that in future we won't have to say quite so often 'would have made more sense if they bothered to measure ______'
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: In the process of finding a diagnosis

Postby robslatt4567 » Sun Mar 19, 2017 12:35 am

Etae ADORAMOUS insanto
I really need to create a second reality
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