New and Looking for Answers

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

New and Looking for Answers

Postby acaldwell66 » Tue Apr 03, 2012 9:56 am

I am new to this site and hope I can find some support and suggestions. First off I am sorry this post is so long.

My problems started about a year ago with extreme fatigue. It was to the point it took all I had to get up and walk to the bathroom. Then I started having muscle twitches here and there. Worse in my calves but not exactly painful. They would happen basically anywhere between my head to my toes. This went on for about 6 months or so before the muscle aches set in so badly that I decided to go to the doctor. My primary care doctor originally suspected Lupus and tested for that with no success. A few weeks after my initial appointment with him I woke up one morning with a very strong internal tremor. It felt like an earthquake and for a moment or two I thought we were having a real earthquake (not common in my area) but then realized my bed wasn’t moving… in fact I wasn’t visibly moving either. It was all on the inside. It was violent and scary but not really painful. After a couple of episodes like this my doctor began to suspect MS.

Since that time several other symptoms have developed::: tingling/numbness in my feet, twitching of my fingers, random ‘bee sting’ feelings, tremors, vaginal numbness, stiffness, lack of balance and coordination (resulting in several falls) and some cognitive issues.

So far I’ve had many blood test to rule other things out and an MRI which showed some lesions but not what the radiologist called ‘typical’ MS lesions.

I feel like I need to research other illnesses/diseases, but I am at a point where I’ve researched everything I can think of and nothing else fits.

I guess I am like some of you are or have been....wishing, hoping and praying that I don’t have MS and at the same time wanting some solid answers. I’ve been dealing with this actively for about 6 months and just recently got in to see a neurologist. He was a very rude neurology intern and walked into the exam room with the opinion that I was either mentally ill or a hypochondriac and he made it very clear that was how he felt. I did see an attending neurologist that same day who was much nicer and has ordered an LP.... but I am back to second guessing myself (I did this for about 6 months before ever seeing a doctor) and wondering if my proactive stance where my health is concerned has made the doctors ‘label’ me as a flake.

I would appreciate any opinions/suggestions on what else (other than MS) I should research and also your experiences in dealing with similar issues.

Thanks
acaldwell66
Newbie
 
Posts: 4
Joined: Tue Apr 03, 2012 9:46 am

Advertisement

Re: New and Looking for Answers

Postby search » Tue Apr 03, 2012 10:13 am

It would help if you provided a many blood test results as possible, age, sex, etc,

Magnesium is an extremely important mineral whcih is usually overlooked by physicians. Blood levels are irrelevant, since most of the Mg is in the tissues. It is easily lost when there is not enough vit D, lots of stress, coffee, alcohol, diuretics, etc, While calcium contracts muscles and activates neurons, Mg relaxes both, so low Mg can cause fatigue, cramps, twitches, constipation, spasms, reduced pain threshold, impaired short term memory, etc, 200 mg/d Mg as citrate and 800 IU/d vit D can correct a deficiency.

Vitamins B are lost every day in urine and may not be provided in adequate levels in the diet. Low folate or vit B 12 can cause neuropathy that produces tingling, numbness, burning sensation, etc, and sometime (but not always anemia) Bess (vitamin B comples from GNC) has most of the vits B, except PQQ, which must be taken separately (10 mg/d).

To see more about supplementation to reduce oxidative damage, etc, see
general-discussion-f1/topic19557.html

Take care & good luck
search
Family Member
 
Posts: 38
Joined: Fri Mar 23, 2012 8:12 am

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 11:07 am

magnesium was my mental go-to when reading many of your symptoms. water treatment facilities process it out of tap water which used to be a traditional source. magnesium is involved in over 300 processes in the body so suboptimal levels can present very differently from individual to individual. it is true that most magnesium in the body is in tissue rather than blood but, being in blood is how it gets to tissue. i have found that serum magnesium, while not considered a great test, does provide a useful broad brush stroke sense of status. research has shown that serum magnesium levels in the UPPER HALF of the 'normal' range put you at lower risk of magnesium troubles.

excellent food sources of magnesium include spinach and swiss chard. alcohol, coffee (but apparently not caffeine if i recall correctly) and stress etc are certainly major depleters. supplemental forms are either organic or inorganic. inorganic is less soluble and so it goes right through you with limited absorption. i use one of the organic forms, magnesium glycinate for absorption, and also magnesium citrate which is a little less soluble but 'keeps you regular' ;)

if you care to read more, you may be interested in my 'signature' links provided below. major suspect nutrients in ms cases include vitamin D3, vitamin B12, magnesium, zinc... that's just a few to get you started :) if you've had those tested, do let us know (if you feel comfortable about that) if not tested yet, if you should happen to follow up and get levels we can help you compare your results to those seen in 'healthy controls' in research. ttfn!

ps other great magnesium sites include whfoods.com for food info including best sources, nutritiondata.com nutrient search tool for really detailed food info, and www.mgwater.com, a super compendium of research and analysis.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby search » Tue Apr 03, 2012 12:18 pm

It is not the amount of a nutrient in a given food that matters, but its absorbability. Coffee actualy increases Mg elimination (being a diuretic). It's like spinach, which are suggested as a good source of iron by mnay and which is completely false, since it has little iron and phytate, whcih inhibits its absorption.

Daily supplementation with magnesium citrate is the only practical way I know to ensure optimal magnesium levels (not only to somewhat ameliorate a deficiency). When there is excess Mg stool movements become too frequent or too soft, which is corrected by reducing slightly the dialy dose.

Like I mentioned in this old article, Mg is a prima donna, which is difficult to acquire and retain and easy to lose, but which performs beautifully when present.

Med Hypotheses. 2001 Feb;56(2):163-70.
The multifaceted and widespread pathology of magnesium deficiency.
Johnson S.


Abstract
Even though Mg is by far the least abundant serum electrolyte, it is extremely important for the metabolism of Ca, K, P, Zn, Cu, Fe, Na, Pb, Cd, HCl, acetylcholine, and nitric oxide (NO), for many enzymes, for the intracellular homeostasis and for activation of thiamine and therefore, for a very wide gamut of crucial body functions. Unfortunately, Mg absorption and elimination depend on a very large number of variables, at least one of which often goes awry, leading to a Mg deficiency that can present with many signs and symptoms. Mg absorption requires plenty of Mg in the diet, Se, parathyroid hormone (PTH) and vitamins B6 and D. Furthermore, it is hindered by excess fat. On the other hand, Mg levels are decreased by excess ethanol, salt, phosphoric acid (sodas) and coffee intake, by profuse sweating, by intense, prolonged stress, by excessive menstruation and vaginal flux, by diuretics and other drugs and by certain parasites (pinworms). The very small probability that all the variables affecting Mg levels will behave favorably, results in a high probability of a gradually intensifying Mg deficiency. It is highly regrettable that the deficiency of such an inexpensive, low-toxicity nutrient result in diseases that cause incalculable suffering and expense throughout the world. The range of pathologies associated with Mg deficiency is staggering: hypertension (cardiovascular disease, kidney and liver damage, etc.), peroxynitrite damage (migraine, multiple sclerosis, glaucoma, Alzheimer's disease, etc.), recurrent bacterial infection due to low levels of nitric oxide in the cavities (sinuses, vagina, middle ear, lungs, throat, etc.), fungal infections due to a depressed immune system, thiamine deactivation (low gastric acid, behavioral disorders, etc.), premenstrual syndrome, Ca deficiency (osteoporosis, hypertension, mood swings, etc.), tooth cavities, hearing loss, diabetes type II, cramps, muscle weakness, impotence (lack of NO), aggression (lack of NO), fibromas, K deficiency (arrhythmia, hypertension, some forms of cancer), Fe accumulation, etc. Finally, because there are so many variables involved in the Mg metabolism, evaluating the effect of Mg in many diseases has frustrated many researchers who have simply tried supplementation with Mg, without undertaking the task of ensuring its absorption and preventing excessive elimination, rendering the study of Mg deficiency much more difficult than for most other nutrients.
search
Family Member
 
Posts: 38
Joined: Fri Mar 23, 2012 8:12 am

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 12:47 pm

hi search, from the tone i wonder if you possibly misread the phrase 'major depleters' - but if not, then good, we agree!

also s, have you tried magnesium glycinate? you might find it even more beneficial than citrate. i used to use only citrate, then only glycinate, and now i use both for complementary reasons.

i have seen that med hypotheses magnesium article many times - a good read and mg is certainly a wonderful mineral.

@ac, if you have any more questions or comments, that's why we're here :D
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby acaldwell66 » Tue Apr 03, 2012 1:47 pm

Thanks to both of you.

Here are my labs that I have copies of.

Magnesium 2.5
Sodium 137
Chloride 99
Urea nitrogen 11
Creatinine 0.8
Calcium 9.9
Albumin 4.5
Blood glucose 93
Aspartate aminotransferase 27
Alanine aminotransferase 20.0
Alkaline, phosphatase 63
Bilirubin 0.6
Total protein 7.5
Phosphate 4.1

I know my B12 was checked at some point, but I do not have those numbers. I was told at the time it was within normal range.
Since it was going to take some time to get in to see a neuro my primary care doctor consulted with one and was told to go ahead and start me on weekly B12 injections. I have been on those for about 2 months now with only a small improvement (fatigue is not as bad).
acaldwell66
Newbie
 
Posts: 4
Joined: Tue Apr 03, 2012 9:46 am

Re: New and Looking for Answers

Postby search » Tue Apr 03, 2012 2:09 pm

You're welcome. In my humble opinion, IV B12 is required only if you have pernicious anemia and even then, not weekly for 2 months. That is a huge amount of B12, especially if you are not receiving folic acid along with it (they complement and displace each other, so they should be administered together).

Like I said serum Mg is almost irrelevant, since about 2% of Mg is in serum and the rest in tissues. You may even have high serum Mg and low tissue Mg, the only effective way I know to ensure sufficient Mg in tissues is by taking supplements and reducing intake slightly when stool becomes frequent or loose. Moreover, in order for Mg to enter the cell, vit B6 and taurine are required.

The other thing I mentioned in several threads is that the reference values are almost meaningless (even though most physicians rely on them blindly), since by law they are obtained by forcing 95% of the people analyzed the previous year to fall within them.

Your glucose is a bit high for me (my ideal range is 66 to 79), which may indicate early insulin resistance. do you have an insuline test?

Do you have a cytometry to see hemoglobin, mean cell volume, RDW, etc,?
search
Family Member
 
Posts: 38
Joined: Fri Mar 23, 2012 8:12 am

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 3:34 pm

ac if you remember or can find out what the test result was (with units) plus the dosage and form of cobalamin in the weekly injections i could comment on that.

what i can tell you about my case is this: when i was outright b12 deficient it was due to dietary choices, no detectable level in serum, and a naturopath wanted to give me paid weekly injections. i did not like the form that was available. went with daily sublinguals instead. research has shown that sublingual delivery is just fine compared to injection. at the time, where i live the more bioavailable form was only available in sublingual pills or strips. i don't know about what's available these days, since my b12 levels have gotten well up thx to short term therapeutic megadose back in '06, plus permanent dietary changes and maintenance level multivitamin/b-complex supplementation. if you get a chance to find out your b12 test result (with units) that might be useful.

having that magnesium value will be useful if you want to compare yourself to levels in others. serum magnesium is extensively used in research, and you also see RBC magnesium since it's considered a better test. do you know if the level you quoted was serum or RBC? and units? if i knew that i might be able to elaborate further :) either way. in the past when i was dealing with low magnesium problems it was noticeable in my serum bloodwork and got better when the serum level was higher. i think it's a good thing you have that number :)

oh and lyndacarol may chime in on the blood glucose issue. was that a random, or fasting test?

i totally agree re meaningless reference values.

ttfn - if you have anything else to report or ask, i'll be back.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 3:55 pm

ps this document interests me but i can't yet back up anything this author or authors say(s), and he/she/they don't back him/her/themselves up either, except in a disappointingly vague way.

http://www.space-age.com/MagnesiumSerum01.pdf
the pdf specifies an optimal serum magnesium range of 1.0-1.2 mmol/L, and provides details of their approach to daily maintenance vs therapeutic dosages etc.

renal profile (apologies for not spending the time to make it line up properly)
std..........ref range..............optimum
BUN.........7.8-18.9 mg/dL.....12.0mg/dL
serum Cr...0.5-1.5 mg/dL......0.8 mg/dL
serum UA..3.6-7.8 mg/dL......4.0 mg/dL

so by their lights your BUN and Cr look a smidge on the low side.

interesting, but i have to comment that the reference range they provide for uric acid is much higher than the one i'm used to (it happens, that's part of the reason they are useless) but also, the 'optimum' level is significantly lower than levels i tend to see in studies where they measured serum UA in a cohort of healthy controls. from what i've seen 4.0 mg/dL is about what you see in your typical ms patient who is NOT having a relapse. it drops even lower during relapse. healthy controls in studies i've seen would be more up in the 4.8 range. there's a correlation with zinc status, so that's another set of tests that you might be interested in.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby lyndacarol » Tue Apr 03, 2012 4:42 pm

jimmylegs wrote:ac

oh and lyndacarol may chime in on the blood glucose issue. was that a random, or fasting test?


Here I am. I agree with "search" – if you had a fasting glucose test, 93 mg/DL is a little high. This blood sugar level will trigger the pancreas to produce extra insulin – I am quite sure that if you had a fasting blood insulin test at the same time, the result would have been more than 3 UU/ML. The ideal level of insulin is lower than that.
User avatar
lyndacarol
Family Elder
 
Posts: 2089
Joined: Thu Dec 22, 2005 4:00 pm

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 5:03 pm

found info on 'normal' ranges for both fasting and random, for comparison's sake.

http://labtestsonline.org/understanding ... e/tab/test

Fasting Blood Glucose
Glucose Level ===================== Indication
From 70 to 99 mg/dL (3.9 to 5.5 mmol/L) = Normal fasting glucose
From 100 to 125 mg/dL (5.6 to 6.9 mmol/L) = Impaired fasting glucose (pre-diabetes)
126 mg/dL (7.0 mmol/L) and above on more than one testing occasion = Diabetes

i can't find a direct link to these 'normal' random glucose test ranges on the ADA site, but here they are from wiki
http://en.wikipedia.org/wiki/Random_glucose_test
The reference values for a "normal" [JL note - their emphasis on normal, mine on random] random glucose test in an average adult are 70 - 140 mg/dl (3.9 - 7.8 mmol/l), between 140 - 200 mg/dl is considered pre-diabetes, and > 200 mg/dl is considered diabetes according to ADA guidelines (you should visit your doctor or a clinic for additional tests however as a random glucose of > 200 mg/dl does not necessarily mean you are diabetic).

this is just info from a testing supplier,

Random Blood Glucose Test
A random test is done at any time, to get a "snapshot" picture of the glucose concentration in your bloodstream. ... A healthy blood glucose level is between 70 and 110 milligrams per deciliter (mg/dL). According to the guidelines of the American Diabetes Association, diabetes is diagnosed if the level is above 200 mg/dL in a random test, and the person has symptoms of diabetes.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 5:15 pm

also, a number range for healthy controls (for fasting blood glucose only)

http://mdrf-eprints.in/278/1/Abnormal_a ... _NIDDM.pdf

fasting blood glucose in 90 healthy controls = 4.9 +/- 0.5 mmol/L which converts to 88 +/- 9 mg/dL. so they were anywhere from 79 to 97 in that study. that's a little tighter than the range they gave at labtestsonline, but you're higher than the middle of the range either way, 'normal' or 'healthy'.

now, to find a few more studies that examined FBG levels in healthy controls, for replication's sake.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby acaldwell66 » Tue Apr 03, 2012 7:18 pm

Wow.. you guys are full of info. Thanks. I will look at everything again in the morning and post then (it's bedtime for me! lol), but I can say that my glocuse test was NOT fasting. The appointment that the blood work was taken on was in the middle of the day... probably 30-45 mins after I had lunch.
acaldwell66
Newbie
 
Posts: 4
Joined: Tue Apr 03, 2012 9:46 am

Re: New and Looking for Answers

Postby jimmylegs » Tue Apr 03, 2012 7:59 pm

heya, okay thanks for the update ac. :)

and ya, lots of info! nitey nite and happy reading tomo :D
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9235
Joined: Sat Mar 11, 2006 4:00 pm

Re: New and Looking for Answers

Postby search » Wed Apr 04, 2012 4:24 am

getting back to your blood test.
1) They probably also analyzed your potassium, which you didn't provide and we need also a cytometry. Is that total, direct or indirect bilirubin?

2) A fact that doctors seem or choose to ignore: Hydration varies considerably, so it is better to use ratios than absolute values. Your Ca/P of 2.41 is within my ideal range of 2.3 to 2.7, but Mg/Ca and Na/Ca are low. Here are my ideal ranges: 8.7<Ca<9.3, 3.5<P<4, 138<Na<142, 102<Cl<106. as you can see, your Ca of 9.9 is far above, P of 4.1 is slightly above, Na is slightly below and Cl is far below ideal, so perhaps you were slightly dehydrated and had not been taken enough salt in your diet.

3) Most doctors provide Ca supplements together with vit D and Mg, which defeats the purpose, by keeping a high Ca/Mg and eventually causes hypercalcemia. I would not take Ca supplements together with Mg and vit D. Vit D increases Ca absorption from food and Mg increases Ca resoprtion, so no Ca supplements are needed with a good diet.

4) Make sure your Mg and Zn supplements are not the ubiquitous, inexpensive and insoluble oxides or hydroxides which are not absorbable and contain harmful impurities, but the soluble gluconate, citrate, etc,

5) Ideally 20<AST<26 and 14<ALT<19, which tends to occcur when the liver is healthy and its Mg is optimal.

6) I really believe that PQQ, Co Q 10, lipoic acid, beta-alanine, Zn, Mg, vit K & D, etc, can reduce considerably the oxidative damage in MS and provide a respite for repair.
search
Family Member
 
Posts: 38
Joined: Fri Mar 23, 2012 8:12 am

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users