This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello. First off to let you all know im an 18 year old male. I suffer from OCD, and anxiety. I really hope I don't offend anyone here because I wasnt officially diagnosed with ms, but I just want to let you all know i am going through many symptoms and going through MANIC depression. I dont know where else to go because my parents think its my OCD and im producing these feelings. First off, let me tell you some of my symptoms. It started with waking up with a numb arm, my arm fell 'asleep' , it rarely happens but its scary. I also woke up with a numb leg recently. Also, my vision is sort of strange, i mean its nothing to severe but when I look at a screen of something the image will stay there, almost like my vision process is slowed down. Ill see a white screen infront of my eyes for a while if i just look at something bright. I also have almost an absent orgasm. But i've only experienced that once so far, because im very nervous and scared. I get some tingling sensations and hot and warm sensations at times, the tingling isnt really that noticable at all though and happens mostly when i move around and it isnt broad its mostly on the tips of toes, ankles, arms. I also get random numbness that comes and goes quickly on random parts of my body. I lost all hope in my life. I know its rare for me to get MS but it HAPPENS, and thats what my parents dont understand. I cant seem to find a link to any OTHER DISEASE than MS which is killing me. My mom still argues with me and says its all in my head and that it could be so many other things. Thats honestly BS to me though, why would i go to other diseases when my symptoms match MS the most? The only hope I have that I dont have ms is that I take hot showers at times and my symptoms dont seem to worsen or new ones to appear while im heated up. I hope noone thinks im stupid for posting this because I know most of you have and suffer with MS. I do so much research with this disease and know of people who have it. My moms step sister has it and I heard stories of her suffering. If im offending anyone just tell me and ill delete the post. Im just so scared and I dont get why im feeling this way. Could it be anything else like lyme disease, mononeuropathy, b12 deficiency(im not a vegetarian), or anything else? Im 18 and i was planning to go to college and make a life for myself but now im stopped dead in my tracks and I see myself dead in the next year. I know MS doesnt kill you but psychologically im done. My life has already stopped for me at 18. and I dont know what to do. I want to see a doctor, but my parents refuse thinking im crazy.

Welcome to our community, bob123. We are not an exclusive club; we are glad you have found us. I am not knowledgeable on Obsessive-Compulsive Disorder (OCD) or anxiety, but cannot see how either could be responsible for the symptoms you describe; however, your parents, no doubt, are more knowledgeable and may have a valid opinion; certainly, they always want the best for you. You know your body best and can identify new and unusual symptoms. If these worry you, I hope you can see a doctor and dispel your fears.

First, take a deep breath. You may not have MS at all; it is a differential diagnosis – made by ruling out other possibilities; your mother is right: it could be "many other things." It COULD be Lyme disease or B12 deficiency or a number of other possibilities, but you need a doctor's help to rule these out. Although MS is considered a disease of young adults, children as young as two years old have been diagnosed with MS. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, rather than self-diagnosing, you need to find and work with a GP or internist with whom you are most comfortable, who is compassionate and who enjoys being a "disease detective." He can order the tests necessary to rule out some of those other possibilities . Begin with a thorough physical baseline examination including blood tests for your cortisol level, glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, CRP (C-reactive protein) test, (our member jimmylegs recommends a vitamin D3 test as well) . Ask for a copy of all your test results for your own file.

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

Fourth, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). This may be hard for an 18-year-old to do, but may be the most beneficial. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. I think that Fatty Liver Disease is also involved. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com). It goes without saying: Don't smoke!

We are not offended by your questions; actually, I am quite impressed with the obvious research you have done. You are trying to take responsibility for your health and I commend you for that. Please remember that every case of MS is unique; for many people it is no more than an occasional inconvenience, not every case is as severe as your mom's stepsister's. We don't know what the future holds – if you are academically and financially able to attend college, I encourage you to do so. Make the most positive progress in your life now so that you can be understanding and help someone in the future. You have much to offer. And continue to participate here at ThisIsMS.
All the best 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?"

hi bob and welcome.

lyndacarol is right when she says i'll likely recommend a vit d3 test, but actually i recommend quite a bit more as well

from a nutritional standpoint, based on what you've described, i think you'll find zinc, magnesium and fatty acids the most likely culprits, and the biggest bang for your buck in terms of getting tested. when zinc levels are down, it affects b12, d3 and uric acid levels, all of which have been found to be suboptimal in cases of ms. your response to d3 intakes depends on your zinc status, so it's best to measure both. would be a waste of money to throw massive amounts of supplemental vit d3 in, if you can't absorb it.

re supplements, in addition to the ones i mentioned for testing, you'll probably want to consider b-complex - but testing the whole complex is a big job, possibly pricy, so it's just something to consider buying - a good b-50 complex may be useful. i also have some personal experience helping friends who deal with mental health challenges, and the nutritional approach can be very effective if the patient takes it seriously and sticks with a healthy regimen.

some questions for you:
what barriers do you face re setting up a doctor's appointment for yourself?
how's your diet?
if you showed your parents published science relating nutrition to mental health and wellness, would you be able to get some support for getting testing, healthy food, and supplements if needed?

for additional reading, check out my 'signature' links below, and feel free to ask me any questions you might have. i'll be back with some scientific research abstracts for you.

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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

here's a good research abstract you can show your folks, in order to justify a trip to the doc to ask for testing:

Alterations of serum zinc, copper, manganese, iron, calcium, and magnesium concentrations and the complexity of interelement relations in patients with obsessive-compulsive disorder.
http://www.ncbi.nlm.nih.gov/pubmed/22383079

i can give you serum targets for serum zinc, iron (ferritin actually) and magnesium - they're in the first post of my regimen thread (link below). they are all very specific points within the 'normal' range so if you get the tests, do use these targets to evaluate your status. the normal range at the lab won't really tell you anything other than whether you are like, or worse off than, all the other sick people who had that particular level tested there.

the nutrients studied in that test form three important ratios. eg the copper-zinc ratio, the calcium-magnesium ratio, and the iron-manganese ratio. if you push the low side up, you can balance out the ratio overall.

if they still don't go for it, you can just try boosting your intakes of foods high in mag/zinc/iron:

magnesium - http://www.whfoods.com/genpage.php?tnam ... oodsources (basically, eat a cup of boiled chard or spinach every day to get a third of what you need, build from there. boiling these specific greens for 3 minutes is key, as it allows you to consume the high volumes without accumulating oxalic acid. boil the water first, then dump in the greens and set the timer, drain at three minutes, season to taste) (note: these foods are considered healthy copper foods as well but the amounts are appropriate at a fraction of a mg per serving)
zinc - http://www.whfoods.com/genpage.php?tnam ... oodsources (pay attention to the amount in mg per serving - i would take venison or beef any day over crimini mushrooms)
iron - http://www.whfoods.com/genpage.php?tnam ... oodsources
on this list, i'm seeing decent nutrient amounts for things like venison, spinach, lentils, chickpeas, soy/tofu, etc. (again, chard and spinach are listed as sources of manganese, but the amounts are less than 2mg per serving)

you can avoid magnesium depletion by minimizing coffee, alcohol (in future ), etc; and avoid zinc depletion by minimizing intakes of gluten grains, dairy, sugar etc

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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

as for what i said about fatty acids, i think the jury's still out, can't find a study yet, where they looked at serum levels of both DHA and EPA in OCD patients vs controls, same thing re treatment, there's just one study where they found EPA alone was not effective in OCD cases. it may be another ratio thing, i don't know. regardless, omega 3s are good for you, can't hurt, right? salmon and flax seeds are two super simple dietary options for improving omega 3 status.

Effects of Omega-3 Fatty Acids on Mental Health: Summary
http://www.ncbi.nlm.nih.gov/books/NBK11853/
"emerging models regarding depression and schizophrenia do suggest plausible bases for the use of omega-3 fatty acids to treat or prevent these psychiatric disorders."

EPA but Not DHA Appears To Be Responsible for the Efficacy of Omega-3 Long Chain Polyunsaturated Fatty Acid Supplementation in Depression: Evidence from a Meta-Analysis of Randomized Controlled Trials
http://www.jacn.org/content/28/5/525.short
"The current meta-analysis provides evidence that EPA may be more efficacious than DHA in treating depression. However, owing to the identified limitations of the included studies, larger, well-designed, randomized controlled trials of sufficient duration are needed to confirm these findings."

A placebo-controlled cross-over trial of adjunctive EPA in OCD.
http://www.ncbi.nlm.nih.gov/pubmed/15003438
"The results of this study suggest that adjunctive EPA is ineffective against OCD."

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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

Thank you so much for all the info guys. I'll try to show my mother some of that stuff so maybe she could take me to the doctor, so I can get checked out and tested. I did a couple weeks ago get tested for c-reactive protein and a metabolic panel which came out normal. The only thing that was elevated was my bilirubin. I went to a gastro and he said I could possibly have Gilbert's Syndrome. But GS is harmless, and doesn't cause many symptoms , almost unnoticeable (yet GS patients say otherwise) I have been taking some vitamin B12, D3, and Choline 250 to see if that stops the weird sensations im getting. Like the tingling, numbness, itchy which again, the symptoms aren't too severe but Im just scared itll get worse.

hey again, be VERY suspicious of 'normal' test results. you have to know what part of the 'normal' range is occupied by healthy people in research and go by that, not by the ranges in labs where everyone providing test data is sick. normal ranges are for everyone, including both sick and healthy people. it's a statistics term that is misleading when it comes to health.

as for high bilirubin, that's another arrow pointing to zinc. what was your bilirubin result?

Serum zinc levels in hepatic encephalopathy.
http://www.ncbi.nlm.nih.gov/pubmed/7797277


i don't think metabolic panel includes zinc and magnesium testing (for some reason i can't fathom), but albumin's in there.. albumin levels are also correlated with zinc status. what was the albumin result? if it's low-normal (and keep in mind you have to look at the 'normal' range in research, 'normal' from the lab doesn't always match, esp if they only use patient data), that's yet another arrow pointing to zinc.

another study to show the folks:

The effect of severe zinc deficiency on serum levels of albumin, transferrin, and prealbumin in man
http://www.ncbi.nlm.nih.gov/pubmed/6792896


keep in mind your body's ability to use D3 and B12 depend on your zinc status. i don't have info (yet) on a zinc-choline connection, but regardless - don't throw money away on pills your body can't deal with.

good luck with mum and getting to the doc. don't know if you saw my question about whether you can set up your own doctor's appt?

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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

Bob, I find your elevated bilirubin and your mention of "itchy" pointing to the liver. This would be in the area of expertise of an endocrinologist, but certainly you might begin by discussing the possibility of an enlarged liver or even a fatty liver with your GP or internist. It was good to get the CRP (C-reactive protein) test; as you probably know, it indicates the level of inflammation in your body; <1 is the optimal level. I am not acquainted with Gilbert's Syndrome, perhaps it is wise to check that out as well.

I suspect that these things are interrelated in MS:
visceral fat (fatty liver) leads to production of cytokines lead to excess insulin leads to increased inflammation, which leads to more visceral fat…

Please let us know how things go. All the best to you.

re the liver

Zinc deficiency (2009)
http://www.ncbi.nlm.nih.gov/pubmed/19528881
"PURPOSE OF REVIEW: Zinc plays an essential role in numerous biochemical pathways. Zinc deficiency affects many organ systems, including the integumentary, gastrointestinal, central nervous system, immune, skeletal, and reproductive systems. This article aims to discuss zinc metabolism and highlights a few of the diseases associated with zinc deficiency.
RECENT FINDINGS: Zinc deficiency results in dysfunction of both humoral and cell-mediated immunity and increases the susceptibility to infection. Supplementation of zinc has been shown to reduce the incidence of infection as well as cellular damage from increased oxidative stress. Zinc deficiency is also associated with acute and chronic liver disease. Zinc supplementation protects against toxin-induced liver damage and is used as a therapy for hepatic encephalopathy in patients refractory to standard treatment."

Effects of Low Dose Zinc Supplementation on Biochemical Markers in Non-alcoholic Cirrhosis: A Randomized Clinical Trial (2012)
http://www.ncbi.nlm.nih.gov/pubmed/22827782
"...We enrolled 60 cirrhotic patients in a double-blind, placebo-controlled, randomized clinical trial. All patients in the interventional group (n = 30) received long-term, low dose Zn supplementation (50 mg elemental Zn sulfate daily). ... In this study, we determined that low dose Zn supplementation could prevent deterioration of clinical status of cirrhosis and prevent excess Cu accumulation in non-alcoholic cirrhotic patients. Zn supplementation produces metabolic effects and trends towards improvements in liver function, hepatic encephalopathy, and nutritional status."

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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

Ok, thank you all for the info. Ill try to make my mom take me to the doc. I really hope its nothing serious. Also, I know that a lot of people with MS are heat sensitive. I've been taking a lot of hot showers lately (because it relaxes me), there didn't seem to be any worsening symptoms or occurrence of new symptoms while taking a hot shower. As you know one of the symptoms i've been getting is a sometimes tingly feeling in my feet and hands. But today when I took a hot shower I felt a sorta tingly feeling in my feet while in the shower -which i didn't remember feeling RIGHT BEFORE i got in the shower. My feet were dry and red (from the hot water) and also, I tend to focus on my body more while in the hot shower so I really do hope this was just me over-thinking it because of my OCD. I know ya'll think I probably don't have MS, and my mom even yells at me all the time I dont. But maybe you guys could tell me some of the things I would be feeling in sequence, and how it would all occur IF I had MS? Its just because I cant get my mind off it until I can find a reason to say to myself "stop, you don't have it." Maybe guys could tell me something that would and wouldn't happen with MS so i can distinguish better because the disease has so many possibilities.

hey there, no probs. look ms is different for everyone, and lots of things can look sort of like ms, there's no definitive diagnostic test, just a series of tests that increase your statistical chances of having ms based on the results. there's always that chance that it's NOT ms, for those of us who *have* been diagnosed.

so unfortunately i don't know if anyone can tell you what you 'should' feel in order for it to be ms.

what i can tell you is just what i already have, there's a nutrition component to both ms and ocd, and if you address the nutrition science with high and specific expectations re results, you have the best chance of learning if your bloodwork matches patient blood in research, and work to make it match healthy blood instead. when i did this i got more benefits than i had expected. things i thought were just 'life' resolved. it's awesome.

here's another person's tale re fears about having ms - i'm linking you to the happy ending, below. if you like you can go back through the posts to read the ups and downs of this person first listening to me and having symptoms improve, then listening to their doc and getting worse, then listening to me and getting better again, etc etc.
post193710.html#p193710

_________________
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

Ok, thank you very much. Also I should mention this hot/cold sensation in my legs seems to get worse while im sitting down on my computer chair. And when I wake up in the morning laying down in bed it seems to be almost completely gone. weird?

you're welcome hard to say what's up with the hot cold sensation. some symptoms can be postural. my main one that i ever noticed was the lhermitte's sign, which was from a classic c-spine b12 deficiency lesion.

_________________
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

Ah yes, Lhermitte's sign. I don't know too much about that but I heard bending your neck forward can trigger it. I did that out of curiosity, nothing unusual happened. Anyways I just visited my doctor for the sensation I have been getting. He said it could possibly be psychological from anxiety but he wants to address these symptoms. He's referred me to a good neuro and a cardiologist, so hopefully I'll figure out what the problem is from there.

Also I'd like to add I've been taking some anti-panic/anxiety meds. I'm not sure if you're familiar with Klonopin (Clonazepam) , but strangely it makes the numbness/ strange sensations better and I don't feel them as much it also relaxes me and puts me in a better state of mind. What could that mean?