No Idea What's Wrong

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

No Idea What's Wrong

Postby GrahamCracker » Sun Nov 24, 2013 9:32 pm

Hi all.
Im 23 years old with a lifetime of troubling health issues, no insurance and no answers. My grandmom had MS, but no one ever talked to me about her symptoms, so I know nothing about the disease. All I know is she spent half her life in a wheelchair, and in her last few years, she slowly lost her ability to write and draw.

A little background on my health as a child and teen:
When I was young (started around maybe 4yo), I had migraines every day. They were so bad I would hallucinate and constantly had to miss school.
I also had a terrible immune system, and anything that went around school, I got.
My whole life Ive had terrible bouts of depression and mood swings. I constantly thought about killing myself.
When I hit the teens, my migraines subsided, and the occassional migraines werent nearly as severe. However, I ended up developing PCOS (undiagnosed by a dr).
When I hit 18, I started having terrible chest pains that got so bad I would drop things or fall to the ground in pain, which got me looking into Lupus online (I fully believe the pain was from stress at the time, but the other symptoms did make some sense).

Nowadays, my immune system seems to be better, but I continue to develop other symptoms.
Everyday I suffer some type of pain. Sometimes its in my calves (like a charlie horse that sometimes lasts for days and interferes with my ability to drive), sometimes I get just awful pains in my shoulders, elbows, or even my arms, and recently I seem to get a good bit of pain in my ribs. Any of these pains will last anywhere from a few minutes to days.

What actually finally brought me here tonight is my nuerological symptoms. I used to speak so eloquently, but now I can barely form a thought. Words are hard to find, and I feel stupid when I talk. The past few months Ive noticed that Ibecome confused when it gets dark out. Im a delivery driver, and as soon as the sun sets, I have trouble seeing to drive, feel like I cant drive straight, and cant read. I constantly show up at the wrong house. Ill look at the address number and immediately pull into the wrong driveway thinking Im right. I even end up on the wrong road looking for addresses that dont exist.
The way things are going, Im terrified Im not going to be able to work eventually and wont be able to afford anything. Ill lose everything Ive ever workedfor. Ive already lost 10 hours off my work schedule because the stress of working a 40 hr week takes such a toll on me that my mood swings become unbearable.

Not to mention my fatigue.Last year it got so bad I literally couldnt leave my house. I self diagnosed as hypothyroid (blood tests said I was 110% healthy in every way). After just a week on thyroid pills, I felt reborn again. However, this time around, my fatigue doesnt resopnd to thyroid pills (I stopped taking them so as not to evoke hyper). Sleep doesnt help. Im too tired at home to do anything but watch tv.

Sorry I seem all over the place; my brains a mess, and I dont actually have a computer and am having trouble typing on a tablet.

I dont have the typical pins and needles feeling of MS, not sure if that means I dont have it. Looking for some input from people who know the disease (or maybe anyone who knows someone with my symptoms who knows what it might be).

Almost forgot about my workout exhaustion. I love working out, but exherting myself at the gym makes me dizzy and lightheadex, and I overheat as soon as I start. I cant remember the last time I finished a workout. Squats are literally impossible for me. Im not sure why, but even without weights, if I try the squat motion, my vision blacks out and I cant see for a few seconds. Kinda scary.

My work, personal and love life are all falling apart in front of me, and I feel so helpless. My whole life Ive done nothing but suck up the pain, so when Im actually feeling so bad that I complain or cant do something, people dont believe the pain is real and act like Im just lazy or overdramatizing. They make me feel bad about myself when Im alreadyfeeling my worst. I get the feeling this is why my parents never took me to the doctors when I was younger.

Because of my fatigue and neurological problems, I feel like a completely different person these days. My friends no longer seem interested in me. Not good for my depression. I dont even like the dull lazy person Ive become, but I no longer function well enough to do anything about it.

Help, please. Any input is greatly appreciated.
GrahamCracker
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Re: No Idea What's Wrong

Postby jimmylegs » Mon Nov 25, 2013 5:29 am

hi graham, welcome to the forum. I can help if you would like to explore nutritional solutions.. I only realized after I got this diagnosis and started researching, that I had had nutrition problems that went way back into childhood. check out the link in my auto signature (sorry I can't make it active there you have to copy and paste it to a browser) - has lots of info. feel free to ask me questions. the confusion issues you are experiencing, by the way, remind me of how I felt when my own zinc deficiency was at its worst.. and that is just the tip of the iceberg with zinc. it is needed for all kinds of things, hundreds, thousands, in your body. specifically the immune system, reproductive health etc etc etc.
and if you're into working out, i'd be having a close look at your magnesium status too.. could be linked to mood, stress, fatigue, muscular pain, etc
I can give you a short list of blood tests if you think you will be able to get some bloodwork done. it's a low-hanging fruit kind of approach, optimize the nutrition and then see what symptoms you might still have left to deal with. you'd have to get your own copy of the results and bring them here - the lab and the doc likely won't be equipped to interpret the findings properly. let me know if you think you want to investigate.
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Re: No Idea What's Wrong

Postby GrahamCracker » Mon Nov 25, 2013 8:31 am

Thanks. When I had bloodwork done, I wasnt deficient in any vitamins, but I dont remember what all was tested. I know zinc deficiency is common with PCOS, and I used to supplement for it specificLly. I also used to take Magnesium as my digestive problems led me to believe I was deficient.

However I have been taking multis lately, and I know at least the one vitamin I took yesterday contained zinc. Even when I would take a full multivitamin every day for weeks, my mental health continued to deteriorate.

Could allergies cause me to be abnormally deficient in something, even if Im getting enough of it into my body? My allergies have been awful lately, and they seem worse at night. Although the nighttime confusion started before my allergies began acting up...

Also, how would I look into finding any type of free clinic in my area? From what I know the only thing we have is the health dept., but theyre more useless than a bicycle with one wheel...
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Re: No Idea What's Wrong

Postby jimmylegs » Mon Nov 25, 2013 9:56 am

heya, if you can get a copy of all your nutrient test results i'll have a look - deficiency assessment methods are OUT TO LUNCH ime.
a zinc result and a magnesium result would be excellent if you have.
allergies could be an indicator of poor zinc status. multis generally don't contain much and the form might be subpar.
tell me, do you eat much bread or gluten in general? that can affect important stuff like iron (strong links to fatigue), zinc, and magnesium too...
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Re: No Idea What's Wrong

Postby lyndacarol » Mon Nov 25, 2013 10:21 am

GrahamCracker wrote:Hi all.
Im 23 years old with a lifetime of troubling health issues, no insurance and no answers. My grandmom had MS, but no one ever talked to me about her symptoms, so I know nothing about the disease. All I know is she spent half her life in a wheelchair, and in her last few years, she slowly lost her ability to write and draw.

A little background on my health as a child and teen:
When I was young (started around maybe 4yo), I had migraines every day. They were so bad I would hallucinate and constantly had to miss school.
I also had a terrible immune system, and anything that went around school, I got.
My whole life Ive had terrible bouts of depression and mood swings. I constantly thought about killing myself.
When I hit the teens, my migraines subsided, and the occassional migraines werent nearly as severe. However, I ended up developing PCOS (undiagnosed by a dr).
When I hit 18, I started having terrible chest pains that got so bad I would drop things or fall to the ground in pain, which got me looking into Lupus online (I fully believe the pain was from stress at the time, but the other symptoms did make some sense).

Nowadays, my immune system seems to be better, but I continue to develop other symptoms.
Everyday I suffer some type of pain. Sometimes its in my calves (like a charlie horse that sometimes lasts for days and interferes with my ability to drive), sometimes I get just awful pains in my shoulders, elbows, or even my arms, and recently I seem to get a good bit of pain in my ribs. Any of these pains will last anywhere from a few minutes to days.

What actually finally brought me here tonight is my nuerological symptoms. I used to speak so eloquently, but now I can barely form a thought. Words are hard to find, and I feel stupid when I talk. The past few months Ive noticed that Ibecome confused when it gets dark out. Im a delivery driver, and as soon as the sun sets, I have trouble seeing to drive, feel like I cant drive straight, and cant read. I constantly show up at the wrong house. Ill look at the address number and immediately pull into the wrong driveway thinking Im right. I even end up on the wrong road looking for addresses that dont exist.
The way things are going, Im terrified Im not going to be able to work eventually and wont be able to afford anything. Ill lose everything Ive ever workedfor. Ive already lost 10 hours off my work schedule because the stress of working a 40 hr week takes such a toll on me that my mood swings become unbearable.

Not to mention my fatigue.Last year it got so bad I literally couldnt leave my house. I self diagnosed as hypothyroid (blood tests said I was 110% healthy in every way). After just a week on thyroid pills, I felt reborn again. However, this time around, my fatigue doesnt resopnd to thyroid pills (I stopped taking them so as not to evoke hyper). Sleep doesnt help. Im too tired at home to do anything but watch tv.

Sorry I seem all over the place; my brains a mess, and I dont actually have a computer and am having trouble typing on a tablet.

I dont have the typical pins and needles feeling of MS, not sure if that means I dont have it. Looking for some input from people who know the disease (or maybe anyone who knows someone with my symptoms who knows what it might be).

Almost forgot about my workout exhaustion. I love working out, but exherting myself at the gym makes me dizzy and lightheadex, and I overheat as soon as I start. I cant remember the last time I finished a workout. Squats are literally impossible for me. Im not sure why, but even without weights, if I try the squat motion, my vision blacks out and I cant see for a few seconds. Kinda scary.

My work, personal and love life are all falling apart in front of me, and I feel so helpless. My whole life Ive done nothing but suck up the pain, so when Im actually feeling so bad that I complain or cant do something, people dont believe the pain is real and act like Im just lazy or overdramatizing. They make me feel bad about myself when Im alreadyfeeling my worst. I get the feeling this is why my parents never took me to the doctors when I was younger.

Because of my fatigue and neurological problems, I feel like a completely different person these days. My friends no longer seem interested in me. Not good for my depression. I dont even like the dull lazy person Ive become, but I no longer function well enough to do anything about it.

Help, please. Any input is greatly appreciated.

Welcome to This is MS, GrahamCracker. We are glad that you found us. We all have a connection to MS – the disease itself, care about someone who has the disease, or simply an interest in the disease. AND we all have our unique ideas and experiences with this disease.

My focus is on insulin – my insulin levels have been moderately elevated on every test through the years. Although I am not overweight because I severely limit my carbohydrate intake, excess insulin in the bloodstream can cause weight gain. Elevated insulin is also usually found in women with PCOS. The "fasting blood insulin test" (this is NOT the same as the glucose/blood sugar test used to diagnose diabetes) is one of the least expensive blood tests and could be worth your while:

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.
Excess insulin (scientifically called hyperinsulinemia) causes muscles to thicken and stiffen – this might explain your calf/muscle pain.

In Part 2 (of this 7-part presentation) Dr. Gary Kaplan, D.O., lists many symptoms (anemia, fatigue, neurological symptoms, depression, brain fog, etc.), similar to yours, as manifestations of Atypical Celiac Disease – if you cannot afford to check this out with your physician, you might try eliminating wheat/gluten from your diet for six weeks and note if there is any improvement in your symptoms:

http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo

All the best to you.
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: No Idea What's Wrong

Postby jimmylegs » Mon Nov 25, 2013 11:05 am

part of the reason nutrient level tests always seem to come back 'normal'
Status of nutrition education in medical schools
http://www.ncbi.nlm.nih.gov/pmc/article ... rt=classic
"On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2–70 h)."

also note this perfect example of the problem
The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for “normal” results
http://www.degruyter.com/view/j/cclm.20 ... 10.077.xml

it's not exactly that serum magnesium is the problem, it's how the test results are interpreted. shoddy. still, a serious problem nonetheless
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Re: No Idea What's Wrong

Postby GrahamCracker » Wed Nov 27, 2013 8:18 am

My aunt has celiacs, so I actually went gluten free for a weekrecently (which was so hard, as bread is my favorite food!). I stopped because as my body was cleansing the gluten from my body, I started having terribly vivid dreams that had me waking up even more tired than I already am. I almost had to call out of work because of it. Since then, Ive definitely become more aware of gluten, and eat less in my meals (Ive even switched over to gluten free cereals). Im not sure if steadily decreasing my gluten intake before completely eliminating it will help alleviate the main problem or not, but its worth a try.

I think I forgot to mention that I get EXTREMELY tired after eating. Pretty much any time I eat an actual meal (small snacks seem to be ok). Well, lately, I also get dizzy and lightheaded after a meal, along with the fatigue, and my digestive system doesnt seem to appreciate having food in it. Last night, within minutes of finishing my plate, I had to lie down so I didnt fall over, and as I rested on the couch my stomach began turning terribly. I havent been "regular" in a while. Getting zinc and mag asap, but if that doesnt help, maybe I should head to the hospital. :/ Its the simple fact that Im deteriorating so quickly that makes me worry. I usually have short periods of time when Im healthy, and long periods of illness, but Ive never had newsymptoms develop so rapidly.

The fatigue after a meal occured even when I took my thyroid meds, so Im guessing those issues are not caused by my hypo. I guarantee Im insulin resistant, but havent read up on it in a while or had tests done, so idk if that could be the culprit. Maybe I just need to take more HCl again with meals, but, like the hypo, if thats not the problem, I dont want to supplement when I dont need to and cause myself to have too much stomach acid.
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Re: No Idea What's Wrong

Postby jimmylegs » Wed Nov 27, 2013 9:10 am

OK I think you are on to something if bread is your favourite food, and food knocks you out. I used to be the same way when I ate bread.
if you can find the zinc and magnesium results from previous testing, please do relay.
don't go buying zinc and magnesium willy nilly, that purchase requires some information first. I will link you up to some decent product alternatives and then you can see what you can find locally (or online).
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