Any opinions are great I'm worried

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Any opinions are great I'm worried

Postby Kristoy » Mon Oct 29, 2012 4:52 pm

I have been having numerous problems since mg son was 4 months old.

Myoclonic jerks that now happen during the day
Numbness
Painful tingling/pricking
Horrible memory loss
Chronic leg pain from my toes to my hips
Pelvic spasms made much worse by sex
Weakness and bad fatigue
Lastly, slurring of my words

I was admitted to the hospital with a numb foot for 4 days. A spinal tap was done as well as about 5 different MRIs. I have an appointment in a neighboring city to see an ms specialist who I see for the first time nov 6. I called for my MRI rests and neuro that admitted me said he saw no ms like lesions on my brain. Does this mean I'm clear of ms? Should I still are the specialist??!

FYI my grandma had ms as well
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Re: Any opinions are great I'm worried

Postby jimmylegs » Mon Oct 29, 2012 5:00 pm

this will be no surprise to regular members here when i ask if you've had a look at nutrition.. i'm assuming you're the mom so i'll ask if you took prenatal supplements, if you breast fed/feed your child, any dietary restrictions, any nutritional supplements in the picture? from your description of symptoms i'd look at serum zinc and magnesium levels first. pregnancy is a well known nutrient drain and zinc is a huge one for building other human beings, so maternal levels can be severely affected. low level daily zinc supplements can't keep up with the drain of pregnancy.
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Re: Any opinions are great I'm worried

Postby Kristoy » Mon Oct 29, 2012 5:29 pm

I had my son two years ago also I've had extensive bloodwork done to rule out a deficiency so it's not that :(
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Re: Any opinions are great I'm worried

Postby jimmylegs » Mon Oct 29, 2012 6:30 pm

ok then did you take prenatal supplements? did you breast feed? did or do you have any dietary restrictions? i'm assuming no on the nutritional supplements.. may i ask which bloodwork?

fyi be skeptical re lab results.. deficiency states are often found within the 'normal' ranges published in research, never mind the so-called 'normal' ranges at individual labs. have a glance at this for details: regimens-f22/topic2489.html#p15460 (scroll down to the bloodwork section)
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Re: Any opinions are great I'm worried

Postby Kristoy » Mon Oct 29, 2012 6:35 pm

Yes I took prenatal vitamins. I was told by two physicians that I do not have any deficiencies. Lyme disease was also ruled out and vitamin b12 deficiency. I did Breastfeeding but continued my prenatals throughout and a month after
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Re: Any opinions are great I'm worried

Postby jimmylegs » Mon Oct 29, 2012 7:01 pm

thx. do you know what your b12 level was? did they run associated tests eg MMA? perhaps Hcy?

vit b12's a case study for docs not really nailing what the definition of deficiency should be. they only count you as deficient when they can measure enlargement of mcv (mean corpuscular volume). that's down around 180 pmol/L. meanwhile according to research you can start to get cognitive impairment at way higher levels. i try to keep my levels up over 500 pmol/L.

as for what docs tell you - if i call my doc's office tomorrow and ask for the date i tested deficient in vitamin b12, they'll look in the computer system and tell me i never was. but they're wrong - the test had come back 'less than 75' which the computer couldn't plot on a graph, so no red flag on my b12 status. and so my doc did not have b12 deficiency on her radar when i was being diagnosed. i didn't realize the computer system was screwed up until much later.

if i go for a zinc test, they'll say i'm 'normal' if my levels come back at say, 12 umol/L. the range is 11.5-18.5. but, to match 'healthy control' subjects in research, i keep my level above 18.

if i go for a mag test, the lab says i'm 'normal' if i'm between 0.70 and 1.10 mmol/L. research says people should be at least 0.90 mmol/L - some sources say 0.95 mmol/L.

if i go for a vit d3 test, my doc would be fine if my level was 75 nmol/L. i prefer 125 - 150 nmol/L. it's much easier to keep my d3 and b12 levels up when my zinc level is also high.

in many cases having a 'normal' result come back from a lab just means you are consistent with all the other sick patients who came there to be tested. not many healthy subjects are in the data set for comparison..

some ideas to consider.
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Re: Any opinions are great I'm worried

Postby lyndacarol » Mon Oct 29, 2012 7:04 pm

Welcome to ThisIsMS, Kris. Since your post subject line asked for any opinions, I offer you part of my standard action plan suggestion:

First, you may not have MS at all; as you probably know, it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. Before today's tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if those symptoms temporarily worsened when the patient sat in a hot bath for a while. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I usually think a GP or internist with whom you are comfortable, who is compassionate and who enjoys being a "disease detective" is appropriate at first. I am not sure that a specialist, a neurologist, is necessary right at the beginning of your investigation, but since you have the November 6 appointment, go for it. However, I tend to believe that if you see a surgeon, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." A GP can order the tests necessary to rule out some possibilities. Start with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). Ask for a copy of all your test results for your own file. Personally, I suspect insulin involvement and insulin resistance in skeletal muscles as a major part in MS; this could play into your muscle weakness, tingling, spasms (Insulin thickens and stiffens smooth muscles.). Mild cognitive impairment is common to MS and other conditions – there is a connection to excess insulin in MCI as well. I believe MY leg pain or tingling is due to the caustic nature of excess insulin, damaging my blood vessels.

By the way, during pregnancy a mother's body churns out extra insulin to support growth and putting fat on the baby she carries. After the child is born, the mother's pancreas may return to normal production… or not. Maybe your body continues to over-produce insulin – ask for a "fasting blood insulin test." The optimal result should be 3 UU/ML or lower.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, and most importantly, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and removing white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).
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: Any opinions are great I'm worried

Postby Kristoy » Tue Oct 30, 2012 6:27 am

I appreciate all the comments about the deficiencies and possible problems with thy but I've been tested by a few physicians and was told that they were within normal range. My insulin levels were fine I was also tested for diabetes as well. I had an emg (actually 2) and they were both abnormal. My first brain MRI showed problems in the white matter in my c spine. They never specified but yea the list goes on but mostly the tingling and the myoclonic jerks come and go. They are now keeping me up at night. This is one of the 9 or so symptoms I always have but the jerks are new, about 4 months new. I just want answers. I pray it's not ms but at the same time I just want to know what's wrong. My grandma had ms and was bedridden and I am afrais of that.
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Re: Any opinions are great I'm worried

Postby Kristoy » Tue Oct 30, 2012 9:04 am

Sorry I should've specified that this has been going on for two years now. Sorry. I've seen numerous doctors to rule out other possible issues as well. I wasn't very thorough so again I'm sorry. Also something else is the burning feeling in my hands and soles of my feet. It's very unpleasant. I have heat sensitivity that started this past summer but I don't know if that's got anything to do with this or not.
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Re: Any opinions are great I'm worried

Postby jimmylegs » Tue Oct 30, 2012 10:05 am

heya, unfortunately i can't be any more clear about the irrelevance of a 'normal' finding when it comes to nutrients. hope you find some answers.

couple more study links:

re cognitive/memory issues
Effects of moderate zinc deficiency on cognitive performance in young adult rats
http://www.sciencedirect.com/science/ar ... 8482903742

re myoclonic jerks
Magnesium deficiency. Etiology and clinical spectrum.
http://www.ncbi.nlm.nih.gov/pubmed/7020 ... t=Abstract
"...manifestations can be divided into the following categories: totally non-specific symptoms and signs ascribable to the primary disease: Neuromuscular hyperactivity including myoclonic jerks...
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Re: Any opinions are great I'm worried

Postby vesta » Tue Oct 30, 2012 11:26 am

Consider self help ideas which may put an end to these symptoms without having to go through the anxiety of medical exams/treatments.
Check out MS Cure Enigmas.net. Maybe the page MS: Cure or Control for starters.
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Re: Any opinions are great I'm worried

Postby Kristoy » Wed Oct 31, 2012 12:06 pm

I just wonder now what it is if the regular neuro doc didn't see lesions. We will see
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Re: Any opinions are great I'm worried

Postby jimmylegs » Wed Oct 31, 2012 1:32 pm

all symptoms still look like to me as though they could possibly be traced to a mineral imbalance too subtle for mainstream testing, ie 'normal' but still causing problems.

if you have your serum zinc, magnesium or vit d3 tests handy, you could review the results that came back normal to find out if they're actually in a part of the normal range that is known to be associated with deficiency.

health targets for comparison:
serum zinc: at least 18 umol/L (very top of the normal range),
serum magnesium: at least 0.90-0.95 mmol/L (top half of the normal range),
serum 25(OH)vitamind3: at least 125 nmol/L (high up in the normal range)

if you have these tests but not the actual results, just have been told 'normal', you can ask the doc for a copy of the results to compare.
if you have not had these things tested, then these are three tests to consider asking for.

good luck!
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Re: Any opinions are great I'm worried

Postby Kristoy » Wed Oct 31, 2012 1:37 pm

Ok thank you
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Re: Any opinions are great I'm worried

Postby jimmylegs » Wed Oct 31, 2012 1:50 pm

np :)
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