Any suggestions/opinions?

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

Any suggestions/opinions?

Postby breeisreallyawesome » Wed Mar 26, 2014 7:36 pm

Hello. I'm going to try and make this as detailed, yet on pointe as I can so I'm not bombarding you with information. I just need to get a few questions answered and I'd also like some suggestions or a list of things that I should tell my doctor about. I'm just starting this journey, so bear with me. I'll ask the questions after I include a brief history and list of symptoms I'm experiencing as well as what action has been taken so far by my neurologist at this time.

I'm a 23 year old female, relatively healthy. I'm a stay at home mother to an almost two year old daughter, so I've got my hands quite full. hahah.
The first time I noticed this was at night about two to two and a half months ago, and most of my attacks either happen at night or early in the morning. It started off just as a slight tingling sensation in my right hand, only my pinky and ring finger and that part of my palm were affected. It was barely there, but definitely noticeable. Not painful in any way. It slowly started to take over my other fingers, pretty soon the rest of my hand, then preceded to tingle about halfway up my forearm. It lasted for about three to four hours before going completely numb. I could move my fingers, but it felt like I had no fingers to move.. like they weren't my own, if that makes sense.
Skip some time later that week, same thing in the exact same way only I didn't go completely numb this time. The tingling was definitely more noticeable, but wasn't painful. Went away after about five hours.
Skip about a week to a week and a half with no symptoms. This happened before I'd even woken up, I'm guessing. I woke up to a completely numb right leg. My toes, foot, ankle, and up to my knee were completely numb except for a few "sparks?" now and again.. It almost felt like the EMG I had today.. the spark sensation.. It's difficult to explain, really… Anyway, I had great difficulty walking all day that day. The numbness started to die down around 8pm and I was left with the tingling sensation for the better part of the next day. Walking was easier the next day, but still difficult. I managed to have a pretty nasty fall that day going up my front porch. That day, I also had some double vision issues. That went away after 15 minutes from when it started, but it made me very nauseated, so I'm glad it didn't last that long.
Skip ahead three weeks without symptoms.
Now it's three days before today. I'd never experienced pain with these "spells", until today. It also mostly effected my right side until today. My left arm is in pain. It's not like a pain I've ever left before, nor a pain I can really describe. It wasn't tingly this time.. It was much different. It hurt to move, so much so that I tried my best to keep it stationary. Lasted for hours.. I'm not even sure of the time frame that it lasted. It felt like an eternity. No tylenol touched it.. I tried a muscle relaxer that also didn't help. It ended up resolving itself, but my arm is still kind of sore from this episode.

Things that I'm having trouble doing that I hadn't had trouble doing before:
*Dishes. I'm constantly dropping things. I've broken no telling how many bowls and glasses.
*Gripping things in general has become, for lack of better word, weird. Some days it's okay, but I just generally don't have the hand strength I used to. Even opening my daughter's sippy cup to get her a drink is becoming a dreaded task on some days.
*Fatigue. It never goes away. When I say "without symptoms", I mean the tingling and numbness. Even when I get 10 hours of sleep, it's just never enough. I never feel rested. Even doing simple chores is becoming quite difficult because I tire so quickly.
*Vertigo? Not sure if this is vertigo, but when I lay down it feels like the bed is being shaken. Not enough to greatly bother me, but enough to make me feel crazy.
*Talking. In general. I can't ever find the right words and I mix up so much easy stuff that I just try to keep my mouth shut now, and I've always been very talkative and out-going, but now I'm just.. well, embarrassed.

I've had an EMG done, today actually. All checked out fine, except that my sensory nerves in my left leg are a bit sluggish.. so my doctor is back to thinking that I've got MS. He's scheduled an MRI of my brain and of my C-spine, both with and without contrast. I'm not sure of the strength of the scan that he's ordered, but he seems to know what he's doing so I'll just let him do his job.

My questions are:
*I know every case of MS is different and many of the people who have been diagnosed may experience totally different symptoms from their fellow MS sufferer, but does this sound like MS to you?
*With these symptoms just starting almost three months ago, do you think that lesions will be present during my MRI? If they aren't, is it possible that the scan is being done "too early" and that I might actually have MS?
* This seems like a lot of symptoms coming around in a short time. I mean, this hit me all of a sudden.. Did your symptoms go from nothing to full-throttle when you started to have concerns (before you initially made your appointment to check on things)?

Sorry, that kind of became a novel, but I don't really have anyone that I can talk to about this kind of thing. Thanks for taking the time to read this, and I look forward to your responses.
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Re: Any suggestions/opinions?

Postby breeisreallyawesome » Wed Mar 26, 2014 8:38 pm

I'd like to add, they did a lupus blood workup and those tests came back normal. I did have a urinalysis done and my uric acid is through the roof and I have entirely too much protein in my urine. These two things along with bouts of high blood pressure have them concerned that I may have kidney issues, given a family history of kidney disease. I have a re-check on my urine in six weeks.
I'm not diabetic as my blood sugar tests have all come back normal.
I don't have a strict diet, but I'm looking to change that. I'm not obese, but I'm not where I want to be as far as weight goes. Haven't quite lost that "baby weight" from two years ago.
Anyone have anything they'd like to add? I'm scared out of my mind about all of this. It's a lot to take in..
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Re: Any suggestions/opinions?

Postby CaliReader » Thu Mar 27, 2014 8:24 am

Hi Bree,

Welcome. Sorry you have a reason to be here. It sounds like you're getting the standard protocol to find ms. I wouldn't worry about the strength of the mri at this point.

Learnin to live with fear is the challenge. If you get a diagnosis, the fear will change, but, if you're like me, it won't leave. Let us know how it goes.
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Re: Any suggestions/opinions?

Postby breeisreallyawesome » Thu Mar 27, 2014 8:34 am

I will. Thank you.
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Re: Any suggestions/opinions?

Postby jimmylegs » Thu Mar 27, 2014 9:50 am

hi bree and welcome :)

the early days are the scariest, but you can take this on. i like a fighting attitude!!!!!!!

if you feel like reading, here is some info you can read a little bit at a time

regimens-f22/topic2489.html#p15460

(and yes it is a lot to take in, so take your time to absorb :) )
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: Any suggestions/opinions?

Postby lyndacarol » Thu Mar 27, 2014 12:00 pm

breeisreallyawesome wrote:I'd like to add, they did a lupus blood workup and those tests came back normal. I did have a urinalysis done and my uric acid is through the roof and I have entirely too much protein in my urine. These two things along with bouts of high blood pressure have them concerned that I may have kidney issues, given a family history of kidney disease. I have a re-check on my urine in six weeks.
I'm not diabetic as my blood sugar tests have all come back normal.
I don't have a strict diet, but I'm looking to change that. I'm not obese, but I'm not where I want to be as far as weight goes. Haven't quite lost that "baby weight" from two years ago.
Anyone have anything they'd like to add? I'm scared out of my mind about all of this. It's a lot to take in..


Welcome to ThisIsMS, breeisreallyawesome.

Three months is early in your investigation. There is always the possibility that your symptoms do add up to MS, but… IF you do have MS, you have found many supportive friends at this site. We are good listeners; you now have us to talk to. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS - my personal suspicion is that gluten sensitivity, excess insulin, and resulting insulin resistance are players in many MS (or "neurological") symptoms.

I trust that your doctor is compassionate and enjoys being a "disease detective." The first symptoms you describe (tingling/numbness/even pain in your fingers, hands, arms, toes, feet, legs) is the definition of "peripheral neuropathy." Compare the following guidelines from the University of Chicago to the plan for investigation of this peripheral neuropathy that your doctor is doing: http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

I think the testing for gluten sensitivity/celiac antibodies is especially important because neuropathies, ataxia (your difficulties with walking), chronic fatigue, and "brain fog" (your difficulties with talking and finding the right words) are part of the atypical form. Gluten sensitivity can develop at any time in a person's life.

In addition, I think everyone should request a "fasting blood insulin test" – this is NOT the same as a glucose/blood sugar test done to diagnose diabetes. The ideal insulin test result should be 3 UU/ML or lower. Your blood sugar tests may be normal precisely because your insulin level is elevated. During pregnancy a woman increases insulin production in order to develop and put weight on the baby she is carrying. Insulin is necessary for any person to put on weight – if it is difficult for you to lose weight, I suspect your pancreas is producing excess insulin (and your cells are becoming resistant and require more and more insulin to be produced). A diet of wheat/gluten also leads to increased insulin production, which I believe contributes also to the symptoms.

By the way, excess insulin affects the blood vessels by thickening and stiffening the smooth muscles in the walls of the blood vessels and probably accounts for your high blood pressure.
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 suggestions/opinions?

Postby breeisreallyawesome » Thu Mar 27, 2014 4:09 pm

Thank you so much for your replies! I will definitely mention the tests to my doctor for the next follow-up visit. He's being pretty thorough and I appreciate that. It's hard to find someone passionate about finding a diagnosis like this, especially in our little rural area. Most doctors around here are chronically lazy. I'm just afraid that if they don't end up finding anything after the MRI that they'll just write me off and be done with me. I was actually kind of hoping for something nerve related that was an easy fix, so I'll admit that I was a bit disappointed after he told me that the EMG came back relatively normal and he seemed to be as well. They just started off with the tens unit with the "prongs" and didn't use the needles, until my left arm and leg didn't respond well. Turns out that my nerves on that side are a little sluggish but seem to be firing just fine. Those needles suck, though! hahah. I'm still holding out hope that it may be nerve related. I've got some slipped and bulged disks in my T-spine and L-spine, so I'm holding out hope that it's those things causing the problem.
I'm also planning to revamp my diet to bring down my acid levels and get the blood pressure down. I'm pretty clueless when it comes to dieting and eating clean so I'm making sure to do plenty of research before blindly choosing a diet and hoping it will work. There's also the money factor. We're living off of one income and it's very low, at that. I'm just holding out hope that something will be found and that I'm not told that it's all in my head and sent away. I'm also trying not to worry until I have to. Thanks for your help. I'm sure I'll have plenty of questions for you guys as the quest for a diagnosis continues!

This may be a weird question, but it's something that I've noticed that happens to me ever since I can remember.. even in early childhood. If I'm trying to open something or do something with my fine motor skills while I'm laughing, my hand strength completely gives out. It always has, and probably always will. It's just weird to me. Anybody else have this weird quirk with their hands?
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Re: Any suggestions/opinions?

Postby jimmylegs » Sat Mar 29, 2014 4:10 pm

hi bree :) hard to say whats going on with the motor skills. i don't have that issue myself.

one thing i have done for ppl here on the forum when there are really limited resources in the picture is instead of looking at diet patterns and suggesting new food options and blood tests, i'll ask for the weekly shopping list and just look for ways to reallocate spending to maximize nutrient density per dollar. if that sounds like anything you're interested in following up on, just say the word! :)
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: Any suggestions/opinions?

Postby jimmylegs » Sun Mar 30, 2014 8:23 am

also, re
my personal suspicion is that gluten sensitivity, excess insulin, and resulting insulin resistance are players in many MS (or "neurological") symptoms.
from where i sit all our various perspectives are pretty interconnected, eg:
Is Serum Zinc Associated with Pancreatic Beta Cell Function and Insulin Sensitivity in Pre-Diabetic and Normal Individuals? Findings from the Hunter Community Study
http://www.plosone.org/article/info%3Ad ... ne.0083944
"Beta cell function, insulin sensitivity and insulin resistance were calculated ... higher serum zinc concentration was associated with increased insulin sensitivity (p = 0.01) in the prediabetic group."
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: Any suggestions/opinions?

Postby breeisreallyawesome » Sun Mar 30, 2014 1:30 pm

This is interesting! The next time my husband goes shopping, I'll let you know what he's returned with! We need to go shopping soon. We're running pretty bare on food. hahah.
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Re: Any suggestions/opinions?

Postby jimmylegs » Sun Mar 30, 2014 2:58 pm

hi there :) better yet, maybe you guys could take a couple minutes to come up with a shopping list for the anticipated trip, and we could have a look at it beforehand - no time like the present! :D
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: Any suggestions/opinions?

Postby breeisreallyawesome » Tue Apr 01, 2014 10:30 am

Okay, we don't have much as far as the shopping list goes, but here's what I have down so far:
Bananas, grapes, strawberries, carrots, kale, lintels, tuscan sausage, red potatoes, onion, corn, boneless/skinless chicken breast, steak and steak tips, dry red beans/white beans/pinto beans, fresh green beans, some of those Healthy Choice steamer meals, apple and grape juice, raw honey (with comb), 2% milk (mainly for my daughter, but I on occasion have some), whole wheat bread, and white american cheese (from the deli).
Anything I should correct here?

Also, I just called to request a fasting insulin blood test and the nurse is supposed to call me back to set that up. My MRI is tomorrow, too. I'm getting kind of nervous. I know it's pretty early and they might find nothing but I'm almost just as scared that they won't and they'll give up on trying to help me out. I've been having a good week, this week. My energy is higher than it has been in a long while; I still tire easily, but I've been able to do more than I have in a long time, and no tingling/or numbness spells that last for a long period of time. Have been having that feeling like I've got a film over my eyes, though. It's making my vision a bit blurred, but I've managed just fine. Wish me luck!
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Re: Any suggestions/opinions?

Postby lyndacarol » Tue Apr 01, 2014 5:43 pm

Info for breeisreallyawesome about the fasting blood insulin test:

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

Factor #1: Your Insulin Level

Insulin and leptin are absolutely essential to staying alive, but the sad fact is that most of you reading this have too much, 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.

Your 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 and leptin 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 and leptin 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 and leptin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin and leptin test, The tests are done by just about every commercial laboratory and the insulin test is relatively inexpensive.

Facts about Your Fasting Insulin Test:
o 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.
o 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.
o 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.
o 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.
o Exercise is of enormous benefit in improving the sensitivity of your insulin and leptin receptors, and to help normalize your insulin level far more quickly.
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 suggestions/opinions?

Postby jimmylegs » Tue Apr 01, 2014 6:59 pm

Okay, we don't have much as far as the shopping list goes, but here's what I have down so far:
Bananas, grapes, strawberries, carrots, kale, lintels, tuscan sausage, red potatoes, onion, corn, boneless/skinless chicken breast, steak and steak tips, dry red beans/white beans/pinto beans, fresh green beans, some of those Healthy Choice steamer meals, apple and grape juice, raw honey (with comb), 2% milk (mainly for my daughter, but I on occasion have some), whole wheat bread, and white american cheese (from the deli).


ok this is good!

steak and chicken look good. would you be able to work some cold water fatty fish (like salmon) into the weekly shopping list? perhaps instead of the sausage, or one of the steak meals? fish is important for omega 3 fatty acids, among other things.
also, shellfish like oysters and clams are valuable nutrient dense choices - if you start putting shellfish on the weekly list, it would be best to alternate types, since each offers a different beneficial combination of nutrients (oysters are good for zinc and some iron, clams are more for iron)

excellent that you have a dark leafy green like kale on the list! there are two particular greens that are more nutrient dense than kale. swiss chard (green chard, the one with the white stems, is apparently more nutritious than red chard), and spinach. swiss chard requires a 3 minute boil to reduce oxalic acid and still retain nutrients. spinach only needs a one minute boil. i really enjoy both of these greens as a side dish with vinegar, butter and salt. to get the most out of them, you want to have at least a 1c. serving, preferably 2 cups! in order to really get the best out of spinach, it helps to eat it with something like red pepper (the high vit C in red pep can help with iron absorption). both these greens are great sources of magnesium, especially if you go with those large servings.

carrots and potatoes are good - with your potato budget, would you consider spending half of it on sweet potatoes or yams? sweet potatoes are a healthier carb and can help balance out the regular ones. half and half mashed red and sweet potato could be a good way to make sweet potato more palatable to any picky eaters in your household :D

great to see fresh fruit on the list :) strawberries are an excellent choice. the bananas and grapes are both pretty high in sugar. not to say never have them, there are benefits to consuming fructose, but consider choosing the higher sugar fruits less often. other low sugar fruits (not counting obvious ones like avocadoes, tomatoes, lemons and limes, but all with less than 2/3 of the sugar in bananas and grapes) include the strawberries you already have on your list as well as raspberries, blueberries, grapefruit, oranges, kiwis, nectarines, peaches, pears, plums, guava, papaya and pineapple.

fruit juice is pretty high in sugar... how do you balance juice intake over the course of the day, in relation to things like herbal teas, or just plain water? do you ever dilute juice to cut the sugar content?

how many slices of whole wheat bread would you say you typically eat in a day?

also, do you ever buy nuts or seeds? if so, what kinds do you tend to go for?

one last point (i realize it's not necessarily feasible) - if you can choose one or two things in organic form when you shop, the nutrient density will likely be higher. so even if it looks smaller, it can potentially pack more punch per serving. might be cleaner too! http://www.ewg.org/foodnews/summary.php
if i could only pick one organic food, i think it would be spinach, because it's so nutrient dense that i want to eat it as often as possible :)

all right i think that's enough for now :D
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: Any suggestions/opinions?

Postby breeisreallyawesome » Thu Apr 03, 2014 10:05 am

I usually eat baby spinach leaves either with just a spritz or two or italian dressing or plain on a wrap with some kind of deli meat. I typically don't eat whole wheat bread that often. Maybe two to four slices in a two week period; my husband is the bread eater in the family. :lol: The sausage is for a Tuscan Sausage and lintel soup that I make up and it's a family favorite. It has carrots, kale, sausage, lintels, potatoes, and beef broth in it. It's low in salt and a pretty filling yet light meal that lasts us a LONG time after making. :-D

I do a half juice/half water mixture for juices. They mainly go to my daughter but I might have a glass of juice twice a week. I mainly try to stick with water and tea/hot tea. The strawberries my whole family consumes whereas grapes are mainly for my daughter but I may have some as a sugary snack if my blood sugar drops too low (hypoglycemia). My main snack is carrots or celery with just a dab of peanut butter. I'll try to half red potato/half sweet potato mix. I've never been able to get myself to like sweet potato for some reason, but maybe this is a way I can introduce it into my diet to make it tolerable. :smile: Thanks for the suggestions!!

I'm allergic to shellfish, unfortunately. :sad: It always looks so good, but if I eat it then I'll break out in hives and go into anaphylactic shock so I have to avoid it at all costs. I keep frozen Tilapia in my freezer at all times. I'm not a huge fish eater, but Tilapia is my main go-to fish. I prefer my chicken or fish to be pan fried or baked and tend to stay away from fried food. I don't like the taste nor the texture, so that's a win for me when it comes to making healthier choices. :smile: As far as nuts go, I'm a textural eater and nuts just aren't my forte. On occasion I may snack on lightly salted almonds, but that's pretty rare for me. I usually go grab a veggie or make myself a baby spinach wrap if I'm wanting a snack of some sort.

Anything else you'd like to add?
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