Strong family hx MS and now I have spasms?

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

Re: Strong family hx MS and now I have spasms?

Postby jimmylegs » Wed Jul 31, 2013 1:00 pm

np :)
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Re: Strong family hx MS and now I have spasms?

Postby lyndacarol » Wed Jul 31, 2013 5:19 pm

Livelaughlove3885 wrote:I am going to try those magnesium flakes for my dad.

There is also a cream formulation, which I find at my local health food store; it is Syngenic Activated Ionic Magnesium Cream plus B-6 GABA Free.

By the way, today I noticed in a TV advertisement for Nexium that it was mentioned that Nexium could lead to magnesium deficiency!
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: Strong family hx MS and now I have spasms?

Postby jimmylegs » Wed Jul 31, 2013 5:46 pm

nexium: yet another proton pump inhibitor :S yikes!
good tip re the cream - probably an idea to compare the unit price for mgs of magnesium from flakes vs cream. I wonder if there's an online recipe for cream similar to the online recipe for oil?
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Re: Strong family hx MS and now I have spasms?

Postby Livelaughlove3885 » Thu Aug 01, 2013 2:45 am

wow, you guys are all a wealth of information, thanks! I really do think my problem is just a vitamin deficiency. Perhaps I am not absorbing vitamins in my small bowel, like how celiac patients are. My small bowel had lymphocytosis (which means inflammation) but it wasn't from gluten I don't think. No one knows. I work for gastroenterology and I see every pathology that comes back and ever since I had my EGD APril 2012 I have only seen 2 other people with same result as me, out of thousands of pathologies I see every week. Those people are the same as me, they get no answers. That is how rare it is. And there isn't a lot of research. So gastroenterologists do nothing to pursue anything for these patients (and I am one of them). Because of that reason, I am very reluctant to talk to doctors and I do not have trust or faith in them. So I just deal with stuff and as long as I am not falling over dead then i can deal with it. It is total BS. You know what pathologists call patients like me that have duodenal intraepithelial lymphocytosis but negative celiac haplotype testing and negative infection testing and negative NSAID usage and negative ANA and negative H pylori? THey are called the "No Man's Land" of results. ANd it's only about 2.5% of the entire world population that have this, and I am one of those 2.5% and it sucks. So you know something is wrong, but you don't know what is wrong, or what is causing it, and you get no answers, and if you ask the doctor, the doctor will say anything is possible but I DON"T KNOW. The only thing that helps me is watching my sugar levels, eating natural whole foods, exercising, and treating symptoms as they occur. I have been really good by doing that. For a little while I was very weak and sickly and depressed. BUt then i said to myself, "I will have a fighting attitude. Even say if i get crippled and in a wheelchair i can still work on upper body strenght and do bicep curls. I can still have an active social life. ANd i could care less what people think. They think I'm weird, I don't care. All that matters is what i care.". My dad was always very social and outgoing and when he came down with MS he kind of became a hermit, wouldn't go out, very bitter, stopped talking to his freinds. I don't think he wanted anyone to see him crippled. Ok, i am getting ahead of myself. I probably just have vitamin deficiency. I am eagerly awaiting the eye doc appt today!!!!
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Re: Strong family hx MS and now I have spasms?

Postby Livelaughlove3885 » Thu Aug 01, 2013 2:21 pm

Good report from the eye doc today! No optic neuritis at all and over the past 2 days the spasms have basically stopped. Only my chin spazzed one time today. So based on all your advice, I started drinking almond milk since yesterday and eating cheddar cheese since 2 days ago. It has got to have been not enough calcium and vit D that caused these spasms in the first place. She said if the spasms start back up that I can either deal with it or get Botox. She said I should tell my PCP about all this though cause I have MS in the family and he might want to order a baseline MRI of my brain. But do u guys think I'm totally crazy if I don't even tell my PCP? I haven't seen him since like last year before the spasms started. I feel fine otherwise so I was thinking everything should be all good, right?
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Re: Strong family hx MS and now I have spasms?

Postby jimmylegs » Thu Aug 01, 2013 2:46 pm

good news from the eye doc!

fyi - among nuts, almonds are second only to cashews for magnesium content. definitely a good source. 16oz. will be providing a 30mg boost to your daily intake. cottage cheese delivers another 10mg per 4oz serving. cheddar cheese, 8mg per ounce.

keep that electrolyte BALANCE in mind :)

magnesium foods (swiss chard is #1 food for nutrient density.. kicks butt for calcium AND magnesium): http://www.whfoods.com/genpage.php?tnam ... #foodchart
nutrient breakdown almond milk: http://nutritiondata.self.com/facts/custom/278488/2
nutrient breakdown cottage cheese: http://nutritiondata.self.com/facts/dai ... ducts/11/2
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Re: Strong family hx MS and now I have spasms?

Postby lyndacarol » Thu Aug 01, 2013 6:40 pm

Livelaughlove3885 wrote:I really do think my problem is just a vitamin deficiency. Perhaps I am not absorbing vitamins in my small bowel, like how celiac patients are. My small bowel had lymphocytosis (which means inflammation) but it wasn't from gluten I don't think. No one knows. I work for gastroenterology and I see every pathology that comes back and ever since I had my EGD APril 2012 I have only seen 2 other people with same result as me, out of thousands of pathologies I see every week. Those people are the same as me, they get no answers.

...The only thing that helps me is watching my sugar levels, eating natural whole foods, exercising, and treating symptoms as they occur. I have been really good by doing that.

For a little while I was very weak and sickly and depressed. BUt then i said to myself, "I will have a fighting attitude."

Since you work in gastroenterology, I have a question for you. There is lots of discussion about Leaky Gut Syndrome, it was even the topic (a rerun episode) on The Dr. Oz Show today; it is suspected by many here at ThisIsMS as having possible involvement in MS. What do the gastroenterologists you work for think about Leaky Gut Syndrome?

According to Robynne Chutkan, M.D. (on the Oz Show) Leaky Gut can be triggered by food sensitivities, gluten, antibiotics, high dietary sugar, NSAIDs – the inflammation interferes with nutrient absorption. She described a test – the intestinal permeability test – (which simply involves drinking a solution and measuring the urine output) which can diagnose this problem. Is this test performed by the doctors in your office? If you have a vitamin deficiency, perhaps this could be the reason for it.

Thank you for any information you can share on the subject. AND keep inspiring us all to have "a fighting attitude."
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: Strong family hx MS and now I have spasms?

Postby Livelaughlove3885 » Fri Aug 02, 2013 3:03 am

Oh yes, I believe in Leaky Gut Syndrome. I believe the flora in our intestines dictate our autonomic nervous system. I know a lot about this and also about innate and adaptive immune responses, secretory IgA and B cells, small bowel pathology, leptin/firmicutes/bacteroides.... anything like that I have done extensive research on my own, then apply it to real life scenarios at work (but my work doesn't know I do that). I would probably be fired. I keep track of things for my own research purposes. ANd it all makes sense. I see patterns and I actually talk to patients, I mean REALLY talk to them and I see things the doctors don't see. I'll give you some examples in a minute. And by the way, I am just a med assistant who preps charts all day and all i am supposed to do is get vitals on patients and that;s it. I am really gifted, everyone says i should get back to school and become licensed to either be a doctor or something along those lines. Even the docs I work with say talking to me is like talking to someone with already 10 yrs experience and often when i take patients back they'll ask me what i think and I'll straight up tell them what i think and what i think they need to do to feel better and the docs usually order what I say. I have also self taught myself on how to read capsule endoscopies. I look at the report and write down my findings. Then when the doc reads the report I compare my findings to their findings and I am always right.

Now, as far as going back to the leaky gut thing, NO, the doctors that I work with will not even give this a thought. This is thought to be more in the holistic realm of healthcare. Same thing as far as diets go, the docs i work with will not delve into that wholeheartedly. Instead, they prescribe meds or miralax and say eat more fiber, but do not give specific info that patients need. Some people i push for behind the scenes. Like, this one lady, I gave her a bunch of info about FODMAP dieting and I wasn't supposed to do that, but she just wasn't getting any help. I also told her about a nutritionist I thought she needed to see. I could get fired if anyone found out. But she needed help and wasn't getting it (other than getting meds prescribed for irritable bowel)... this lady had pelvic congestion syndrome and i told her she really needs to watch her sugars so the veins around her ovaries don't dilate and cause pain. I told her to watch her glycemic levels and told her some specific things and when she came back a month later she told me my advice worked, not only physically, but mentally as well because finally somebody really LISTENED and just didn't say take meds, you are probably stressed. I know that feeling, because that's what i experience all the time and it's total crap.

So yes I believe in all that stuff but any time a patient comes in asking about leaky gut or something along those lines they will be shot down. If they think they have a food sensitivity (not allergy but intolerance), if it is not proven celiac than they will be shot down. Did you know that soy, tuna, egg, cow milk, rice and cereals, can cause same small bowel damage as gluten but no one is testing for that. I even wondered for myself if i have intolerance to one of those above items since i am negative gluten but the small bowel looks like a celiac patient. I give up. Whatever i am doing now is working. Except that i need to increase calcium, which i am doing and it is working.

I also wanted to say that people with autoimmune disorders usually have a 1st degree relative with lymphoma. Lymphoma is from B cells... B cells are secretory IgA that are first line of defense in intestine.... if they are high that are reacting to an antigen or infecion, and from there cells can proliferate and divide rapidly which then they can become cancerous. It all makes sense. I think people with autoimmune disorders are born with a genetic predisposition to develop something. But i believe first they need to get a viral infection, and one that can cross the blood brain barrier, then it will activate the adaptive immune response.

Also wanted to say that people with autoimmune disease usually always have low secretory IgA. Secretary is different than serum IgA, by the way. They need to increase IgA so they can better fight off infection, and the way to increase it is through diet and watching sugar levels. So that is what I believe but doctors will not tell you this stuff because until the AMA tells them to practice this, then they will not preach it. I don't even think they understand this either, i can tell when i talk to them they just don't understand at a microbiological level the stuff i know... very few understand that i have talked to.

My advice would be to not hold your breath. Find a doctor in the city. Suburb docs don't believe or even care to listen to this stuff, unfortunately
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Re: Strong family hx MS and now I have spasms?

Postby Livelaughlove3885 » Fri Aug 02, 2013 3:13 am

And yes i wondered if i had leaky gut because i did have crypt hyperplasia, so if the crypts are enlarged then technically yes, bacteria can leak through. I think i possibly had that problem but i think now it is fixed. I would be curious if i had another EGD what the results would be, would i still have lymphocytosis? I will never know. The doctors gave me no advice. I got one answer of I don't know. Another doc said non-celiac gluten sensitivity. ANother doc said take miralax. Another doc said something sounds food related but who knows. I gave up talking to them because you get no where and they make you feel like you are nuts.

BTW, i also notice that for all patients with autoimmune disease that get EGDs they almost always have some type of pathology of duodenum which is the small bowel. They may have flattening of villi, duodenal IELs like me, crypt hyperplasia, lymphoid aggregates on colon biospsies, etc. But no one puts this stuff together like me!!!! or maybe they just do not care to. I think it's BS
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Re: Strong family hx MS and now I have spasms?

Postby lyndacarol » Fri Aug 02, 2013 1:16 pm

I strongly urge you to listen to this podcast (with great thanks to NHE!) – It is available for about another two weeks.

diet-f9/topic22774.html

And if you are near Glenview, Illinois, look up this Dr. Leslie Mendoza Temple and introduce her to the gastroenterologists you work with; she is even a professor at the Feinberg School of Medicine at Northwestern University, but she is quite convinced of the legitimacy of Intestinal Permeability.
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: Strong family hx MS and now I have spasms?

Postby jimmylegs » Sun Aug 04, 2013 4:30 pm

Association of vitamin A and zinc status with altered intestinal permeability: analyses of cohort data from northeastern Brazil (2011)
Dietary supplementation with zinc and a growth factor extract derived from bovine cheese whey improves methotrexate-damaged rat intestine (2003)
Nitric oxide synthase inhibitor attenuates intestinal damage induced by zinc deficiency in rats (1999)
Enteric protein loss and intestinal permeability changes in children during acute shigellosis and after recovery: effect of zinc supplementation. (1994)

these studies are all available in free full text. I am looking at the first one right now.. interesting that they are looking at the effects of vit a and zinc on ip, but don't seem to connect that zinc improves vit a utilization. it must be noted in there somewhere.. maybe i'm not using the right search terms.. will have to go read it properly hehehe
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Re: Strong family hx MS and now I have spasms?

Postby Livelaughlove3885 » Tue Aug 06, 2013 2:38 am

Hi all, You know how i started incorporating some dairy in my diet (cottage cheese and cheddar cheese... also the almond milk about an 8 oz glass per day) well that, and I am taking Vitafusion Women's multivitamin which has 800 IU per day in it and 100 mg calcium in it. Well yesterday I incorporated another multivitamin in my diet... I got nature-made calcium, magnesium, and zinc. You can take up to 3 per day. I only took 2 yesterday. And I can't beleive it but last night was the first night in a really long time where i actually got into a deep enough sleep to have a dream ( i can never usually get into a deep sleep anymore). So i put all the info into my phone app, along with what I am eating. And i reached my goal of 1000 mg calcium per day, vitamin D was only slightly over the recommended amount, zinc was slightly over the recommened amoutn, and magnesium was still under the recommended amount but just barely... i got really close to the recommened amount. So i definitely think this whole time my calcium/magnesium was messed up. Now, I read to not take more than 15 mg zinc per day or then it starts to drain the calcium or something like that so that i have to watch for but thanks for the advice of the calcium/magnesium ration... i think i got pretty on target for a 2 to 1 ratio!!!

BTW, a frustrating story (I emailed my PCP a couple days ago..) this is the email: Hi, I just wanted to let you know i saw the eye doc yesterday for spasms and she has dictated a note to you that you will get soon and everything checked out fine! She told me to tell you i was experiencing this because of my family MS history. But the spasms stopped over the past week, and coincidentally, I have also increased calcium intake and vitamin D. Not sure if that is tied in together. Do you think i should get calcium, magnesium, zinc, vitamin D levels checked?

And then my doctor's reply: Sure, we can check them. But i Doubt that would be causing your symptoms. I have rarely ever seen anyone deficient enough to have those type of symptoms.

So I feel mad that i even brought this up to my doctor or to anybody because when i get those type of replies it makes me feel like they are just humoring me and really thinking I am totally crazy. At least he said i can get the bloodwork done, but now it's probably pointless because i started the supplements already so now my levels would be more normalized. My thinking is that i had the PVCs for 2 months, i had the lower eyelid twitch for 2 months, i had that sign they test for where when you tap one spot of your face the facial nerves will start to spaz out, i had all that and all that according to everything i read about the calcium/mad deficiency is what it is. You see what I mean? Doctors do NOT think outside of the box... EVER!!!! that's why i don't want to see any when i have problems. You feel defeated and alone and frustrated and not believed.
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Re: Strong family hx MS and now I have spasms?

Postby jimmylegs » Tue Aug 06, 2013 5:11 am

hey there, great news re the sleep/dreams! cal mag balance is super important for sleep so not surprising you've been having trouble up until now..

yes it would be a VERY good idea to have some SERUM tests of calcium, magnesium, zinc, and d3. even though the doc is being patronizing :S couldn't hurt to ask for serum ferritin and copper also. I think it's become common knowledge at this point that the right d3 test to order is 'serum 25(OH)vitD3'. keep an eye on what they put on the requisition.. my doc did it wrong the first time but that was back in 2006.

I hope you'll be able to smash that dietary magnesium target - swiss chard is a great addition to a greek spinach feta pie filling, if you're inclined to baking with magnesium and calcium rich greens. it will be much better, especially where magnesium is concerned, to get the amount met via food sources as much as possible. supplemental magnesium is notoriously challenging re absorption. many forms are laxative when taken in higher amounts so it can end up defeating the purpose if things are moving through your system too quickly.

good idea to be cautious with the zinc, esp until you have some lab results to work with. I've heard that about its effect on calcium too. studies also show there is an important iron:zinc balance, ie too much of one can deplete the other and vice versa, and any zinc supplement product should be balanced with copper as well, so that some copper resources are sort of pre-allocated to the zinc, and then what comes from food is available for your body's other copper needs.
would be very smart to research foods that are the richest in these various nutrients, incorporate them into your diet in a balanced way so that daily targets are met, and use supplements as a shorter term therapeutic tool while you are getting sorted out - but hopefully not over the long term.

as for testing, your stores won't be replenished much after such a short time supplementing. just wash out for 5 days prior to going to the lab to have the blood drawn.
of course, your levels will come back 'normal' which is fine - we can review your copy of the results and find out how you line up with a patient profile (ie low normal) vs a truly healthy control (ie high normal). then after you do your new regimen for three months, see if they will re-test to see how your levels have improved *and* make sure they haven't gone too high.

note - RBC tests aren't as useful b/c there is not as much rbc data for healthies out there in the research. there are mountains of serum data for healthy controls though. so that's the test that's really useful in terms of setting target levels and comparing where you are in relation to other sickies vs a typical truly healthy person (who of course doesn't show up at neighbourhood labs to input their healthy blood levels into the local system's data)

glad you are feeling better!
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Re: Strong family hx MS and now I have spasms?

Postby Livelaughlove3885 » Mon Sep 09, 2013 2:40 am

HI Everyone... so I'm having another weird thing. Yesterday I woke up and had pins and needles in both hands, but worse in the right hand, it was going down my forearm into my pinky fingers and i had it from when i woke up until when i went to bed. I just woke up now and it's almost gone, just a little in my pinky. I called the doc but I don't have an appt until a week from now. The spasms in my face only happen a couple times a day (before it used to be all day long). I have definitely increased protein and calcium in my diet. I stopped taking the calcium, magnesium, zinc pill because everytime i took one i would get a stabbing pain in the back of my head where my skull meets the neck, isn't that weird? Now, when i go to the doc i am still gonna ask about vit deficiency testing. Also, i was trying to eat cottage cheese and milk but was getting an upset stomach, so instead i switched to lactaid, lactose free cheeses and butter, stuff like that, and of course i still eat a cup of raw spinach every day. Does the tingling sound like more signs of vit deficiency or more like something compressed on a nerve or something? I am asking this here because you guys seem very knowledgeable. Now, also, you guys know how i work out, where recently i have been doing more pushups, like 50 at a time, but i don't have any pain in my arms, wrist, or elbows or anything like that, and i did pushups the day before and was fine all day until when i woke up and had the tingling. Compressed nerve? This is annoying cause i have all these different strange things going on and i feel like im gonna go in to the doctor and tell him about all this stuff and he is just going to look at me like I'm nuts. I always get strange things happening all the time and I always feel reluctant to say anything becuase no one else gets the strange random problems i get. I even ask the docs i work with and they always say, that's weird, never heard of that, i don't know. Like we went crabbing on sunday and caught crabs and ate them. Then monday night, i couldn't sleep all night because i was up itching really bad and felt like my skin was on fire. THen tuesday i was itchy and starting getting some bumps/hives and still felt like my skin was on fire. THen it was gone by wednesday. So i asked the doc i work with if it could be a delayed allergic reaction to the crabs and he said no, a shellfish allergy would happen right away. Plus a year ago i was tested for shellfish allergy and it was negative and I have never had a problem with crabs before. So it's a mystery, as usual with me, no answer. Just everyday something weird happening. Very frustrating.
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