This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

I'm going to be one of those annoying newbies who hasn't yet been diagnosed, but is searching for answers. I am wondering about MS (hence why I'm here!), but I'm keeping an open mind. That said, in searching for information, I have been really impressed with how helpful you all appear to be on the forum, and I thought, 'what the heck' I might as well ask and see if anyone can point me in the right direction.

Currently I am suffering from strange visual symptoms - near constant flashing lights in my right eye (like a pinwheel of light going off in my eye), blurred vision in that eye only, and loss of 'brightness' in that eye (like i'm wearing sunglasses with just one lens). Obviously, my first stop was the optometrist, who sent me straight to the opthamologist, who has just conducted a florescein angiograph(?) which showed white spots in my choroid and blurring of the margins in my optic disk. He said there is obviously an "inflammatory process" going on and is referring me to another specialist, but, he also said that it wasn't neurological because my colour vision was good and no neuropathy was evident by looking at my eye.

For the last 4-5 years I have been suffering from a wide variety of 'niggling' health problems which seem to come and go, and whilst i notice them fairly frequently, i can continue to function until they all 'gang up on me' at the same time. The two most debilitating aspects have been exceptional fatigue (exceptional tiredness, arms so heavy it's hard to raise them above my head to wash/brush my hair, etc.) and what is probably best described as 'brain fog' - memory problems, struggling to find the words I need to express myself, etc. I describe it to my doctors 'as if my brain just shuts down'.

I had an episode about 12 months ago (just using 'episode' as a descriptive term there, not suggesting it was an MS episode), but it came at a particularly stressful period in my life so my doctors said it was just 'stress' and sent me away with antidepressants even though I insisted, and still honestly believe, that I was not depressed. They said that my withdrawal from social activities i used to enjoy, etc. was evidence of depression, even though i kept telling them that the reason I had withdrawn was because i felt so physically exhausted - it's not that I didn't want to participate, it was that I physically couldn't - but why listen to me, i'm just the patient.

I have strange symptoms in my hands and feet, but they've so far been put down to carpal tunnel and/or poor circulation. My hands are the worst, but i struggle to find the words to express it, and the best I usually come up with is that 'my hands feel funny' - not exactly much for my doctor to go off, but I guess it's kind of like my hands are really cold, I find it hard to pick up small objects, and its kind of like they if I had problems with depth perception (which i don't think that i do), i go to pick something up and it's not quite where i think it is... I have hesitated to call it numbness because when it happens, I touch my thumb to my fingers and reassure myself that i can feel that touch, so my fingers aren't actually numb. But, it's also not like it's just fleeting, if its there, it's there for a few weeks or longer.

I work in my husband's business so I've been really lucky to be able to pace myself, and i've become quite adept at working around the fatigue, etc. and i can tell when i've overdone it. I'm having another 'episode' of debilitating exhaustion at the moment, and this time I'm less inclined to accept that it is simply 'stress' or 'depression' given that I have significantly reduced the stressors in my life and taken the course of anti-depressants the doctors insisted that I needed - without a significant change (though who wouldn't benefit from some extra serotonin floating around in their head!).

I've had numerous blood tests, nothing ever seems to show up, but the things that seem potentially relevant are that my Vit D levels are low and whilst i've never had a test for Magnesium, i have experimented with supplements (tablet form, magnesium oil and epsom salt baths) and I am absolutely convinced that I have a magnesium deficiency. I came around to the magnesium thing myself because I realised that I absolutely craved spinach, almonds, pine nuts, etc. so I surmised that magnesium deficiency might be an issue, and have definitely found that i get worse when i don't keep up with my supplements.

I also have polycystic ovarian syndrome, which i was diagnosed with at age 13 (I'm now 33), so whilst i know that insulin resistance may be an issue for me, my fasting glucose levels were always within appropriate ranges even though I am rather overweight - okay, i'll say it - obese (100kgs, 165cm), but my periods are regular, so i actually think my PCOS is under good control despite my weight issues. My appetite is nearly non-existent, but docs always look at the fat girl and assume that I must be kidding myself about what I eat (whereas I'm actually pretty convinced that I completely ruined my metabolism by effectively starving myself - not intentionally, but due to my poor appetite - honestly, I don't think i really know what it is to feel hungry anymore). On the other hand, my uric acid levels always come back on the high side of normal, so from what i've read, that would contra-indiciate MS...

I know that you guys can't diagnose me, but as I am going to see this new doc about this inflammatory eye thing i wanted to go in there with some basic knowledge about whether or not to press for an MRI. I guess what i really want to know is whether any of the symptoms that i have describe sound overtly familiar, and also as many of you seem to have great knowledge about nutritional issues, whether or not there may be a nutritional issue that I've overlooked? I've been tested for celiac, and i'm negative for celiac antibodies.

I have all my blood test results from the last 10 years (ordered them up directly from the lab in an effort to get to the bottom of my chronic health issues), but if anyone thinks that they may be able to help, i'll work out how to post/host them somewhere and post a link.

I'm really thinking that its not MS, because apart from the funny hands/feet, i haven't had real any sensory or mobility issues, but the doc got me kind of worried with the 'inflammatory' process thing and I have kind of dismissed many of the other inflammatory illnesses in my own mind because whilst I do have a multitude of issues, I just don't seem to fit with any of the prominent markers (obviously, as an overweight girl with PCOS i went first to Type 2 diabetes, but I just don't have excessive thirst, frequent urination, and i definitely don't have an increased appetite...).

So, any ideas on where to next? I would dearly appreciate any hints or anything you had to offer.

welcome to TiMS wow are you ever well informed and informative me likes. i'd love to see your results if you can post. also curious if you've had serum zinc done? it's weird how it can affect different people differently. for example, i had a documented zinc deficiency and low uric acid, with 'the best optic nerves' my neuro claimed to have ever seen. meanwhile, you have eye symptoms but it sounds like your urea cycle could be less affected. it'll be easier to see what's up if you can get those results up. i'm very curious about your serum zinc and possible association with thyroid function. also very interested in that uric acid level. again, welcome to the forum

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

@jimmylegs - I was really hoping that you would reply as you seem to be the guru! I've posted my blood test results on Twitter. To to be honest, I'm not really sure how to work Twitter properly, but if you look for @phoebeledford i think i set it for public access so you should be able to access the excel file.... Please let me know if it doesn't work...

The descriptive term for that is 'paresthesia' and I know exactly what you mean.

I never call it numbness, because the problem is that I'm always feeling something. I usually describe it as analogous to the hiss on an old cassette tape: it's always interfering (trouble picking up little things), but you can still hear the loud parts of the music (bigger things, firmer grip). It's harder to relate it to common skin sensations, but I would say my skin usually feels 'tight', and when my feet are really bad it feels like near-frostbite when you finally get your shoes off (OK, so maybe everybody can't relate to that... ).

My paresthesia is 24/7 and definitely from my MS (a c-spine lesion), but paresthesia in all 4 limbs can also be caused by other neural diseases (like transverse myelitis), musculoskeletal spine issues, and vitamin/nutrient deficiencies.

Best of luck in finding your answers,
Mark

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RRMS dx 3/3/11; Copaxone since 12/1/11

arg, i don't have a twitter account! that's weird. i'll have to sign up, will let you know if it works.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

In the clear light of morning, with my brain working a little clearer, i realise i can just post the link https://docs.google.com/file/d/0B09N2rN7Fx-jY0dnN2JoeU1Mc3c/edit

Sorry, when I tried to make it public it only gave me a couple of options to do so and i thought i had to go thru twitter.

Welcome to ThisIsMS, Phoebe.
I cannot say if you have MS, of course, but I do share some of your symptoms: I also have CONSTANT cold hands (and feet); and difficulty picking things up (and writing). Insulin resistance is known to go hand-in-hand with polycystic ovarian syndrome (PCOS). These conditions and excess weight (insulin is called the "fat storage hormone") are accompanied by excess insulin (hyperinsulinemia). Glucose levels can be absolutely normal while the insulin level is elevated – I urge you to request a "fasting blood insulin test" (I would guess the insulin level would be above the optimal level of 3 UU/ML; mine always is.). I too have not had an appetite for years – I am NEVER hungry. Excess weight has never been a problem for me since I eat very little. Type II diabetes is defined as having a glucose level higher than 126, so obviously you do not have type II diabetes yet. If your body is producing excess insulin, eventually the pancreas becomes exhausted and stops producing insulin altogether. Without insulin to manage the glucose, glucose levels rise and the patient effectively becomes "diabetic."

Excess insulin is very caustic and damages the inside wall of blood vessels; this initiates inflammation – perhaps the inflammatory process your doctor has described.

To your question, "any ideas on where to next?"… I urge you to persevere; if your GP or internist will not order the insulin test, I suggest you work with an endocrinologist. Best of luck to you.

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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?"

Well, that's kinda interesting, because I think my insulin was 25...

I've had this test 5 times over the last 10 years, with the following results 14, 20, 17, 17, and then the most recent one of 25 (mU/L). The range is listed as <25. The corresponding glucose levels were 5.4, 5.5, 5.2, 5.6 and 5.4 mmol/L (range 3.0-6.0).

If my conversion is correct, uU/mL = mU/L so therefore all my insulin results, whilst apparently within range, are wildly in excess of optimum.

Thanks for the tip - looks like I have lots of reading to do about insulin levels. I've always thought glucose was the problem, which i guess it is if your concern is diabetes, but if insulin causes inflammation - then maybe that's where i should be looking

My initial insulin test result was 12 UU/ML; since that time, I have not had test results lower than 9.

http://www.mercola.com/nutritionplan/index2.htm


Factor # 1 : Your Insulin Level
Insulin is absolutely essential to staying alive, but the sad fact is that most of you reading this have too much floating around, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.
Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.
You body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.
However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin resistant, and then diabetic.
If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.
Compounding the problem, when your insulin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.
Your Fasting Blood Insulin Test
To find out your insulin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin test, The test is done by just about every commercial laboratory and is relatively inexpensive.
Facts about Your Fasting Insulin Test:
• This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful. A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.
• You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.
• This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.
• If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.
• Exercise is of enormous benefit in improving the sensitivity of your insulin receptors, and help normalize your insulin level far more quickly.

back again. looked up how to get the file w/o twitter acct. this worked: http://api.twitter.com/1/statuses/user_ ... reen_name={USERNAME}

you have SO MUCH great info much of it is not stuff i pay specific attention to but, from what i'm seeing though, the bloodwork does not appear to be an obvious match for ms. klenner protocol for ms suggests ensuring hemoglobin is at least 13. yours is already there. as for your uric acid result, research shows ms patients have uric acid levels in the low end of the normal range whereas yours are consistently high. obviously, your d3 is low - that's definitely an action item...

i noticed that your triglycerides are raised according to IDF standards (>1.7 mmol/L)... (and also noted, incidentally, that the 'normal' range provided via your lab has increased over time, as one might expect when it's just lab patient population data - over time a wider and wider range defines 'normal'). also, those particular elevated hormones appear to be consistent with the PCOS diagnosis. vitamin d3 is well known to be low in PCOS patients. i think optimizing your d status would be a very wise first step. i'd still be interested in seeing zinc and magnesium levels, to find out if they're optimal in your case, or not. if they're not, you could work on them to help your body utilize d3 better.

found this:

Endocrine causes of dyslipidemia
The most common lipid disorder is hyperlipidemia, high levels of blood fat. While many of its possible causes are nonendocrine, hyperlipidemia can also be related to a hormonal disease such as diabetes, hypothyroidism (low levels of thyroid hormone), polycystic ovary syndrome (PCOS), metabolic syndrome, and Cushing syndrome. Central obesity (excess fat around the waist) or insulin resistance (a condition in which the body doesn’t use insulin properly), or both—each of which are risk factors for dyslipidemia—are commonly found in patients with these endocrine disorders.

so about that vitamin d3 - how are your daily intakes from sun, diet and supplements?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I'd just like to say a very big thank you to everyone who offered their assistance.

The reading I've been doing on hyperinsulinemia have been eye opening, and I'm frankly a little pissed off that none of my doctors explained how my high insulin level (independent of my glucose level) could be affecting my health (it's like they were just waiting for me to develop diabetes!). Of course they told me to lose weight, but they never believed me when i told them that I ate very little and they offered next to no advice on how to address my insulin levels and i've been left to try to work it out for myself. What i'm now discovering is that my high insulin level may have actually stopped my body from burning fat, despite my restricted caloric intake.

I have never had a sweet tooth, no cakes, ice-cream, sweets, etc., but what i am discovering, is that in eating what i thought was a balanced diet, I have been keeping my insulin levels high by eating carbs (bread, pasta, etc.). When my celiac panel came back negative I had assumed this wasn't my problem, but now I realise it's not the gluten so much as the insulin response to the blood sugar highs. Of course, i knew about this too, but as my glucose tests always came back normal, I figured I was doing okay. Now i realise that the insulin level could be an issue independent of the glucose level.

I've got an appointment with my GP on Friday, and i'm going to request new fasting insulin and Vit D levels as the previous lot were over 12 months ago now. I've never had my zinc and magnesium levels tested - so i'll be asking for those as well.

I was very lucky to get an urgent appointment with the new eye specialist, who i'm seeing tomorrow morning, so hopefully by exploring these two avenues, i can start to get to the bottom of what is going on with me. I'm starting to get the impression that I too quickly made the leap from inflammatory to auto-immune, but after 4-5 years of poor health, I guess I was looking for something that finally explained all my weird and wonderful symptoms.

I think I'm going to go Paleo! I get the impression that if i completely eliminate carbs, that should help bring down my insulin levels, and hopefully that will help reduce whatever inflammatory condition I have going on...

Thanks again for all your help. I'll pop back after I get the new lot of test results and let you know the outcome.

nice plan! if you set up a new diet and supplement regimen, i can look at it for you if you like. review for pro and anti-inflammatory factors (the info's all there on www.nutritiondata.com). re any supplements, you have to be very careful when supplementing vit d3, not to actually drive your magnesium levels down inadvertently (i've done it, no fun). also, the form of magnesium you select if you choose a supplement, is extremely important. zinc will help you absorb d3 so that you don't have to take as much d3 to get the benefit. i look forward to seeing your results.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Phoebe, I feel that you are absolutely on the right track! You are definitely a quick study; everything you have discovered is correct: your high insulin level HAS stopped your body from burning fat. All carbs, even whole wheat and other complex carbs – although simple carbs are the worst, convert to glucose and then trigger insulin secretion from the pancreas.

As you have learned no doubt, there is no medication to reduce elevated insulin. Diet is the only treatment. I think you will see a change if you follow a Paleo diet. If you can completely eliminate carbs for a period of time, you may be able to reintroduce them slowly again eventually when you have brought your insulin level down.

As you have probably learned, the macronutrients carbohydrates are not necessary for good health. The other two macronutrients, protein and fats, are absolutely necessary for good health!

I believe the following describes the active cycle (I do not know the "official" description; if your doctor has one, please share it) at work:
Visceral fat produces cytokines, which lead to more insulin, which leads to more inflammation, which produces more visceral fat… and round and round it goes.
Or Visceral fat => Cytokines (Adipokines, especially IL-6) [b]=> Insulin=> Inflammation=> Visceral fat…[/b]I think most of our symptoms develop from the excess insulin, but targeting any of the four components (visceral fat, cytokines, insulin, inflammation) should help to reduce insulin and ultimately our symptoms. For instance, green tea will reduce inflammation to a very small degree.

All the best to you. I am convinced that this is the answer. Please keep us informed of every aspect.

_________________
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?"

Hi again,

Thanks again for all your help. I've had an MRI and blood tests - back to the doc tomorrow for all the results.

I am currently working on the new diet plan but I'm very confused and I thought one of you might be able to help (well perhaps this is more directed @jimmylegs who did offer to review my diet plan and also @lyndacarol, who seems to be very knowledgeable about insulin levels).

So whilst i have resolved to go paleo, i have been wondering whether there is a potential risk of harm from what i thought was a reasonably drastic change to my diet. I was reading about ketosis, which as i understand it is a desired state whereby the body begins to use the fat stores and then i started to worry that if I went too quickly from a state of high insulin to completely eliminating carbs, would my body be able to handle that shock?

So i started then to look at low-GI as a gateway to Paleo, but this is where i got confused because apparently pasta is low-GI - how can this be? As I've stated earlier, my sugar intake is limited to pasta, occasional white bread (toast or a sandwich, but almost never both on the same day, and often neither), sometimes rice/lentils, fruit juice which i always water down by at least half and the occasional soda (max 1 per day) or glass of wine... I figured that I was eating too much pasta - but if its low GI, then how is it negatively effecting my insulin levels?

So my questions are these:

Do you think that there is a risk by rapidly eliminating carbs, or is rapidly bringing down my insulin level exactly what i need to do?
If pasta is low-GI, then why is it such a no-no, and haven't I in fact already been following a relatively low-GI diet by limiting my intake of sugar, processed foods, etc.

I just don't understand, because when i look at low-GI diets, that's pretty much what I'm already doing (except for the eating regularly thing, which i don't do because my appetite is so poor - i just don't snack, in fact, I'd be hard pressed to eat 2 meals a day let alone 3-6).

So what makes the Paleo diet different, is perhaps my insulin resistance so bad that low-GI just isn't cutting it and i need to go further? I'm thinking that this makes some sense because my weight has been steady (well, steadily high!) for at least the last 12-18 months (as in +/-2 kgs from my current weight).

I already have next to no processed foods in my diet. I use olive oil or butter exclusively (so no trans fats), i include a range of ingredients in my cooking (i.e. legumes, nuts, veg, etc.) for example, last night we had salmon triangles with cannellini beans, spinach, and low fat cream cheese (and if i'd had pine nuts on hand, they would have been in there too). I know that puff pastry wasn't exactly a healthy choice in which to envelope those healthy ingredients, but then again, can 1/2 a sheet of puff pastry really be the cause of all my problems when it was the only real carb i ate all day?

Hang on... I think it might have just clicked... My insulin is high because i don't eat regularly, and don't eat enough, so my body is interpreting that as a glucose low (or it may in fact be a glucose low - I wouldn't know without regular glucose testing) and my body is trying to raise my glucose levels in response to a perceived glucose low because my diet isn't sufficient... Is this possible? Though if it was, wouldn't my fasting glucose level be low rather than on the high side of normal where it usually is...

In any event, this leads me to my next question, which is probably relevant to everyone on the board... How do you maintain a healthy diet and appetite in the face of debilitating fatigue - if you're not hungry, or you just can't muster the energy you need to make yourself a healthy meal, then how do you maintain a healthy diet?

Anyhow, just wanted to ask this while it was on my mind. I'll be back tomorrow with all my results.

hi phoebe,

low GI and low IF (inflammation factor) are good things to look at for starters.

pasta might be considered low GI (although it's one of the higher GI foods as far as my diet's concerned, so i rarely eat it) but it is also pro-inflammatory.

i looked up a 1c serving of whole wheat spaghetti and its GI score is 15 (you want to stay under 100 for the day). its IF score is -81 (negative scores are pro-inflammatory... you want to make sure your overall score is up over +100 each day)

by comparison a baked sweet potato has a GI score of 10 and its IF rating is +212, so strongly anti-inflammatory.

i wouldn't personally use puff pastry or cream cheese (especially 'low fat' cream cheese) in a meal i considered healthy.. one meal that i consider nutrient dense, low GI and powerfully anti inflammatory is:

-one salmon filet with lemon and a sprinkle of dill,
-half a baked sweet potato, and
-a 1c. serving of dark leafy greens like chard, spinach or kale (boiled for 3 min then drained) seasoned with a splash of vinegar and a little butter and salt.

the effort required to prepare this meal is remarkably low. most of the time and effort goes into washing and trimming the greens for the pot.

LC can comment more authoritatively re issues of insulin, but from where i sit you definitely need to eat regularly to keep the metabolism moving. if you can put yourself on a schedule and regularly consume small whole food snacks, with regular water consumption in the mix, you'll probably be doing better by your system overall.

in general for appetite i'd be looking hard at zinc status and considering how to boost zinc rich foods.

for fatigue, i'd be looking at protein, iron, magnesium, b-vitamins, and foods rich in those nutrients.

as for managing eating in the face of fatigue, whole raw food is just so easy. linking you up to weil's food pyramid - it has not only the pyramid but if you scroll down it has lists of the healthiest choices. diversity is good - don't just pick a favourite from each category. try to rotate amongst the options under each heading http://www.drweil.com/drw/ecs/pyramid/p ... ramid.html
note that he does list pasta as an option (2-3 times per week only - that's WAY more than me.. i'm more likely to have pasta once a month or something like that), but specifically recommends 'al dente' preparation to reduce the GI rating.

anyway getting back to the fatigue thing. for easy whole food intake over the course of the day, you could maybe keep washed fresh fruit around, a decent supply of prepped raw veggies (eg carrots, celery, red pepper, broccoli, cauliflower) in the fridge, with a little hummous for dipping, a selection of nuts and seeds (like sunflower, walnut - be careful to balance the omega fatty acids in your nut/seed/oil intake), perhaps have a hard-boiled egg a couple times a week for protein energy, maybe you like avocado, that kind of thing... just make sure you keep rotating around between food types and don't get into a 'heavy rotation' on any one thing.

hope that helps. looking forward to seeing your results tomorrow!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com