Symptoms questions... Docs are "waiting to see"

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Symptoms questions... Docs are "waiting to see"

Postby cardarlinow » Thu Dec 19, 2013 5:14 am

Ok..

First off.. I have a very strong family presence of MS. One family member has already passed from old age but lived with MS all her life. I have 3 others on my mothers side and one on my fathers side. About 6 months ago I noticed that both of my big toes are numb. Its not completely numb throughout the whole toe but more of a sensory numbness on the skin along the outside and into the middle. I recently went to the doctor to have it checked out. We did an xray because I had some bumps on my foot that showed that I had beginning Osteoarthritis in both feet. We also did an EMG which came back normal. Prior to all of this, roughly three years ago, I went to my eye doctor with a few visual disturbances about a year after my sons birth. After a through exam, my eye doctor said that the visual disturbances were actually ocular migraines and nothing to worry about. However, one of my optic nerves was thicker than the other. It didn't cause me any problems so we just monitored it for a year. I went back every two months to measure a freckle on my cornea and to check my optic nerve. Neither of which ever changed. At that time I did also have an MRI with contrast of the brain to check for any signs of a tumor ( something that could cause only one of the optic nerves to be swollen) or anything that could suggest pseudo tumor cerebri. The MRI at that point was normal.

Now, fast forward, back to my numb toes and my doctor visit. I went back for a follow up to discuss my EMG results. The doctor who did the EMG test said he was going to recommend an MRI of my spine to check the L5 disk. But, when I finally got to see my GP they mentioned nothing of it and said that they didn't feel anything would show up in an MRI at this point. That MS doesn't typically present itself in numb toes ( peripheral neuropathy which is what my diagnosis ended up being, however, I thought the EMG doctor told me it WASNT P.N. So I'm not so sure if that was a mixup) I had blood work up done and was given a handout on what to look out for with MS. I was instructed to go home and wait for more symptoms.

Things happen very subtly for me. I would assume that if it was a big issue I'd notice it and be very bothered by it. So I never know if I should ignore something or keep track of it. I'm not exactly comfortable with the "wait and see" approach. So I wanted to ask some advice on some of the symptoms that I know I do have.

Recently I went to Southeast Asia for a couple months. While I was there I had quite a few dizzy spells. Since coming back home (Midwest-U.S.) I have also had a few dizzy spells but nothing as frequent or dramatic. For instance, Sometimes if I lean down to pick something up like a tub of yogurt out of a display case at the grocery store, I'll lose my balance for a quick second and almost fall over. But this happens so fast that I don't think anything of it. I don't stay dizzy for more than a second or two at a time. I have not had a dizzy spell in about two weeks time now. I did find out through blood tests that my iron was low. So I did start supplements and it seemed that it went away at that time. However, I also have GI problems and started a new diet (vegan plus no sugar, low carb) per my G.I. doc and stopped the iron supplements for the time being and still have not had any problems. I do not believe that my toe numbness is caused by low iron as it wasn't significantly low. Only an 11 and it seems like the toe numbness is coming from a certain spot (possibly on my spine, I'm assuming around L5 because the EMG doc mentioned that spot).
I have sporadic tingling. It will hit a spot on the top of my foot for a second or two.. then five minutes later it will hit my arm for a second or two, etc.. as it moves around my body. I can go a couple hours without feeling a tingle and then I can have several in different spots within the hour. But it isn't constant. My feet also are always cold but never change colors. I have IBS ( thats what the special diet is supposed to treat) and was recently diagnosed with GERD. Not sure if the G.I. problems are related to MS. Just throwing that out there. I also have a lot of sleep problems. I went to see a sleep doctor last year for some symptoms that were troubling me. The doc mentioned that it sounded a lot like narcolepsy but was hesitant to give me a diagosis unless she was 100 percent sure and that could take quite some time to figure out. I did two sleep studies and was told I had sleep apnea but it was still a big question mark as my sleeping is just weird, I guess. Instead of giving me a cpap machine they gave me an autopap because they couldnt find a set pressure that would keep me breathing. I also, only stopped breathing during R.E.M. sleep. Since then, my sleep doctor has retired ( she was only 33... must be nice!) So I will need to see a new sleep doctor and probably start that process all over again to figure out whats going on.
I've also had a few episodes of muscle weakness. It's actually like a sharp pain in a muscle then I feel like it feels funny to move. Kind of like, if you had hit your funny bone. I can move it.. it just will feel different or a little heavy. Again, it doesn't last and usually is gone within a few seconds or a minute or two.

I was thinking about seeing a Chiropractor for my toe numbness. To see if there is anything that they can do that might help alleviate it. Maybe also a foot doctor? I am not sure if I should see a Neuro based on these symptoms I listed since my doctor told me to wait. I just don't know if what I described, warrants a trip to a Neurologist.

Thoughts?
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Re: Symptoms questions... Docs are "waiting to see"

Postby cardarlinow » Thu Dec 19, 2013 5:17 am

I forgot to mention that I am 28 yr old female
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Re: Symptoms questions... Docs are "waiting to see"

Postby cardarlinow » Thu Dec 19, 2013 6:06 am

I forgot to mention something else.. Sorry, I have a million distractions right now so I feel like my post is a little scatter brained. (could that be something to add too? ha ha! Probably not, since the cause of my distractions is 2 and 4 years old. ;) )

I have some sort of sensory issue that I have had for a long time. Mostly on my arms and back. I'm not sure if you would call it tactile defensiveness or what. If someone pokes me, my skin feels bruised and deeply bruised for about 5-10 minutes afterwards. If someone scratches my back, I will be in pain for 5-10 minutes afterwards as well. I'm talking hunched over, almost want to scream pain. When I try to research this type of symptom I get a lot of Fibromyalgia forums and articles. But when I read about fibromyalgia.. I'm not sure it exactly fits. Sometimes I feel like NOTHING fits anything that I'm dealing with and that just leaves me frustrated.

I did just stumble across the MS nutriton summary by Jimmylegs ( I think?) So I will read that.. I think I can find some info there.
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Re: Symptoms questions... Docs are "waiting to see"

Postby CaliReader » Thu Dec 19, 2013 8:18 am

One thing to look for if this ms is whether your symptoms get worse when the temperature is high. Does a hot shower, or travel in a hot climate cause more symptoms?

Keeping a notebook of symptoms as they happen can help you at your next appointment. Then you can describe trends accurately including time of day, weather etc.
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Re: Symptoms questions... Docs are "waiting to see"

Postby lyndacarol » Thu Dec 19, 2013 5:08 pm

cardarlinow wrote:First off.. I have a very strong family presence of MS. One family member has already passed from old age but lived with MS all her life. I have 3 others on my mothers side and one on my fathers side. About 6 months ago I noticed that both of my big toes are numb. Its not completely numb throughout the whole toe but more of a sensory numbness on the skin along the outside and into the middle. I recently went to the doctor to have it checked out. We did an xray because I had some bumps on my foot that showed that I had beginning Osteoarthritis in both feet. We also did an EMG which came back normal. Prior to all of this, roughly three years ago, I went to my eye doctor with a few visual disturbances about a year after my sons birth. After a through exam, my eye doctor said that the visual disturbances were actually ocular migraines and nothing to worry about. However, one of my optic nerves was thicker than the other. It didn't cause me any problems so we just monitored it for a year. I went back every two months to measure a freckle on my cornea and to check my optic nerve. Neither of which ever changed. At that time I did also have an MRI with contrast of the brain to check for any signs of a tumor ( something that could cause only one of the optic nerves to be swollen) or anything that could suggest pseudo tumor cerebri. The MRI at that point was normal.

Now, fast forward, back to my numb toes and my doctor visit. I went back for a follow up to discuss my EMG results. The doctor who did the EMG test said he was going to recommend an MRI of my spine to check the L5 disk. But, when I finally got to see my GP they mentioned nothing of it and said that they didn't feel anything would show up in an MRI at this point. That MS doesn't typically present itself in numb toes ( peripheral neuropathy which is what my diagnosis ended up being, however, I thought the EMG doctor told me it WASNT P.N. So I'm not so sure if that was a mixup) I had blood work up done and was given a handout on what to look out for with MS. I was instructed to go home and wait for more symptoms.

Things happen very subtly for me. I would assume that if it was a big issue I'd notice it and be very bothered by it. So I never know if I should ignore something or keep track of it. I'm not exactly comfortable with the "wait and see" approach. So I wanted to ask some advice on some of the symptoms that I know I do have.

Recently I went to Southeast Asia for a couple months. While I was there I had quite a few dizzy spells. Since coming back home (Midwest-U.S.) I have also had a few dizzy spells but nothing as frequent or dramatic. For instance, Sometimes if I lean down to pick something up like a tub of yogurt out of a display case at the grocery store, I'll lose my balance for a quick second and almost fall over. But this happens so fast that I don't think anything of it. I don't stay dizzy for more than a second or two at a time. I have not had a dizzy spell in about two weeks time now. I did find out through blood tests that my iron was low. So I did start supplements and it seemed that it went away at that time. However, I also have GI problems and started a new diet (vegan plus no sugar, low carb) per my G.I. doc and stopped the iron supplements for the time being and still have not had any problems. I do not believe that my toe numbness is caused by low iron as it wasn't significantly low. Only an 11 and it seems like the toe numbness is coming from a certain spot (possibly on my spine, I'm assuming around L5 because the EMG doc mentioned that spot).
I have sporadic tingling. It will hit a spot on the top of my foot for a second or two.. then five minutes later it will hit my arm for a second or two, etc.. as it moves around my body. I can go a couple hours without feeling a tingle and then I can have several in different spots within the hour. But it isn't constant. My feet also are always cold but never change colors. I have IBS ( thats what the special diet is supposed to treat) and was recently diagnosed with GERD. Not sure if the G.I. problems are related to MS. Just throwing that out there. I also have a lot of sleep problems. I went to see a sleep doctor last year for some symptoms that were troubling me. The doc mentioned that it sounded a lot like narcolepsy but was hesitant to give me a diagosis unless she was 100 percent sure and that could take quite some time to figure out. I did two sleep studies and was told I had sleep apnea but it was still a big question mark as my sleeping is just weird, I guess. Instead of giving me a cpap machine they gave me an autopap because they couldnt find a set pressure that would keep me breathing. I also, only stopped breathing during R.E.M. sleep. Since then, my sleep doctor has retired ( she was only 33... must be nice!) So I will need to see a new sleep doctor and probably start that process all over again to figure out whats going on.
I've also had a few episodes of muscle weakness. It's actually like a sharp pain in a muscle then I feel like it feels funny to move. Kind of like, if you had hit your funny bone. I can move it.. it just will feel different or a little heavy. Again, it doesn't last and usually is gone within a few seconds or a minute or two.

I was thinking about seeing a Chiropractor for my toe numbness. To see if there is anything that they can do that might help alleviate it. Maybe also a foot doctor? I am not sure if I should see a Neuro based on these symptoms I listed since my doctor told me to wait. I just don't know if what I described, warrants a trip to a Neurologist.

Thoughts?

Welcome to ThisIsMS, cardarlinow. You have found a group of many individuals, who are willing to share their unique experiences and opinions on MS. Thank you for sharing your experiences with us.

Currently, I believe that gluten sensitivity and excess insulin play major roles in my neurological symptoms (diagnosed as MS). As I look at your story, it seems to me that hypothesis could apply.

"Strong family presence of MS" – With so many family members with MS, is it possible that a common carbohydrate-heavy diet, gluten sensitivity, or inherited pancreas function lead to the pancreas producing excess insulin? I am also taken by the fact that your visual disturbances occurred within a year of your son's birth: Pregnant women produce increased amounts of insulin so that the developing fetus will put on weight and grow; after delivery of the baby, the mother's body may continue to secrete this excess insulin – her body does not immediately reset to normal. MS exacerbations frequently occur in the mother in the several months after her baby is born.

(By the way, like you, my EMG came back "normal." My first three MRIs were "normal.")

At some point, you received the diagnosis of peripheral neuropathy. Compare your doctor's examination and blood work to the guidelines from the University of Chicago for a neurological exam (in the case of peripheral neuropathy – numbness or tingling in the extremities: feet/legs, hands/arms):

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 (Zinc, magnesium, vitamin D, and copper are also recommended by TIMS member jimmylegs.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (In addition, I suggest a "fasting blood insulin test" – not the same as a glucose/blood sugar test.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Celiac disease/gluten sensitivity is often linked to MS; a mannitol-lactulose test for Intestinal Permeability may be useful.)
Lyme disease
HIV/AIDS
Hepatitis C and B

I agree with CaliReader's excellent suggestion, do keep track of your symptoms in a diary/journal. At the time of a doctor's appointment it is difficult to remember everything. In fact, it might be helpful to note the food you ate just before a new symptom appeared. Sugar? Wheat/gluten? As for whether or not you need a neurologist at this time… I think the place to start is with your GP; he can order or do many of the tests, he can best determine if you need a neuro (or perhaps an endocrinologist?). You mentioned being in the Midwest – Dr. Stefano Guandalini, at the University of Chicago, is investigating gluten sensitivity and autoimmune diseases, of which MS is one; maybe you could arrange to see him.

Although celiac disease/gluten sensitivity can be related to your IBS, according to Part 2, Gary Kaplan, D.O. In his 7-Part presentation on Celiac explains that neurological manifestations can appear in the atypical form :
http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo


Your episodes of muscles weakness may also be due to excess insulin and insulin resistance in those muscles cells.

Your last question was, "Thoughts?" These have been my thoughts; remember, I have no medical background.
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: Symptoms questions... Docs are "waiting to see"

Postby amberfer » Thu Dec 19, 2013 9:08 pm

Hi =)

I'm a newly diagnosed 26-year old female. Your problems sound really neurological! I know there are a lot of theories about what could cause it...but if it were me, I would really pursue a diagnosis - seeing multiple neurologists to interpret your MRIs if necessary (my first MRIs were interpreted as clean by one neurologist, and MS-y by the second). My reasoning is: if you do have MS and you are not on a disease-modifying medication, you are doing permanent damage to your nervous system. There are a lot of things that can mimic MS as well! Even if it is caused by insulin, these drugs are so far the only thing FDA approved to slow the progress of the disease. So for me, I don't want to risk the possible alternatives; I go for what's proven.

Short answer. YES, see a neurologist if you are having neurological symptoms like this. YES they can be caused by things like a B12 deficiency, but the neurologist will test for all these things!
Last edited by amberfer on Thu Dec 19, 2013 9:43 pm, edited 1 time in total.
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Re: Symptoms questions... Docs are "waiting to see"

Postby cardarlinow » Thu Dec 19, 2013 9:38 pm

Thank you so much for your responses so far! I greatly appreciate it.

I have been doing some reading on this forum all day. Looking at links on blood tests and vitamin deficiencies. I emailed my doctor earlier today requesting that we do a more thorough blood work up of more nutrients. They did the metabolic panel and I can access last years results but they have not posted this years results on my online account yet. I know we went digging for iron and ferritin. I know my Iron was 11 which was deemed "normal- low" I am curious were I sit with other vitamins such as the B's and zinc and magnesium. I'm not sure what the test label is for that. One of the things I noticed on last years test was the test GOT which was low. It was 14 from a normal range of 15-41. I'm not finding much information on what that could mean online. So if anyone has any ideas, that would be great.

I have been on a vegan, no gluten, no sugar diet for a week now. Last night I was feeling more hungry and more tempted than usual so I ate some rice with curried vegetables. I have not had any white carbs all week long. No gluten free pastas or breads either. No white potatoes.. etc.. All day today, I just felt a little off. I didn't figure it out until just now what is going on. I ate rice with leftovers for breakfast and lunch. Than, I went out to dinner at an asian restaurant where I had more rice. I've been dealing with nerve pain since 2pm in my right foot which is shooting up to my knee. It has been on going about every 1-2 minutes since then and still is continuing. I decided to test my blood sugar and it was at 133. Which I believe is high since its 3 hours since eating. So, I've emailed my doctor again to let them know this since my non fasting blood glucose was deemed "normal" when I had the Metabolic panel done a few weeks back.

I'm not sure if I understand correctly if you are implying that the insulin is tied to MS? Or, it is either insulin related or MS related? I was a little confused on that. But I definitely now am convinced that there is an insulin problem going on. For awhile it has always been "normal" I've also always struggled with low blood sugar which is why I already have an insulin monitor at home. I am overweight ( well probably considered obese medically) with a vmi of 35. So this is really not surprising.

For the time being I will be back to avoiding all white carbs and gluten free pastas and breads.
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Re: Symptoms questions... Docs are "waiting to see"

Postby lyndacarol » Fri Dec 20, 2013 9:12 am

cardarlinow wrote:I have been on a vegan, no gluten, no sugar diet for a week now. Last night I was feeling more hungry and more tempted than usual so I ate some rice with curried vegetables. I have not had any white carbs all week long. No gluten free pastas or breads either. No white potatoes.. etc.. All day today, I just felt a little off. I didn't figure it out until just now what is going on. I ate rice with leftovers for breakfast and lunch. Than, I went out to dinner at an asian restaurant where I had more rice. I've been dealing with nerve pain since 2pm in my right foot which is shooting up to my knee. It has been on going about every 1-2 minutes since then and still is continuing. I decided to test my blood sugar and it was at 133. Which I believe is high since its 3 hours since eating. So, I've emailed my doctor again to let them know this since my non fasting blood glucose was deemed "normal" when I had the Metabolic panel done a few weeks back.

I'm not sure if I understand correctly if you are implying that the insulin is tied to MS? Or, it is either insulin related or MS related? I was a little confused on that. But I definitely now am convinced that there is an insulin problem going on. For awhile it has always been "normal" I've also always struggled with low blood sugar which is why I already have an insulin monitor at home. I am overweight ( well probably considered obese medically) with a vmi of 35. So this is really not surprising.

Many people find that diet can influence the symptoms of MS. As you know, carbs quickly convert to blood sugar so, in my opinion, this means a low-carb diet is best -- remove all sugar, which you have done (including beer, wine, etc. which have sugar); remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, erythritol, mannitol, maltitol, lactitol, etc. (These promote insulin production more than table sugar.); remove all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible). Whole wheat bread (pushed as "healthy"), with its gluten, raises blood sugar more than a candy bar does. MSG will raise the insulin level, also; Asian restaurants are rumored to use MSG (fact or fiction, I don't know); but whether due to the rice or possible MSG, something DID raise your blood sugar (133 postprandial three hours is elevated) and when the blood sugar goes up, the insulin level goes up in response (always overcompensating in the amount).

Forgive me if I was not clear about the insulin/MS connection. Over the years I have had numerous "fasting blood insulin tests" – this is NOT the same as a blood sugar test. My first insulin test result was 12 UU/ML; no test after that has been lower than 9 – these results are in my lab's normal reference range (but the optimal level is 3 or lower, so mine are moderately elevated, in my opinion). Excess insulin leads to insulin resistance, and it thickens and stiffens muscles (smooth muscles first but skeletal muscles also). I believe this insulin affect on the smooth muscles in the walls of my blood vessels is responsible for the tingling in my legs, feet, and toes (and hands). Urinary problems are common among people with MS – the urinary bladder's detrusor and sphincter muscles are also smooth muscles.

Applying this to your information I believe your blood sugar has been low when your high level of insulin was beating it down. By the way, the human body canNOT gain weight/fat without insulin. If your diet has been reasonable, I assume you have excess weight because you have excess insulin. (I think you have a glucose monitor at home; I have not heard of an insulin monitor.)

Increased insulin leads to inflammation which leads to visceral fat (Anyone, fat or thin on the outside, can develop this fat around the organs on the inside. I am not knowledgeable about the GOT test, but it may indicate the condition of the liver.) Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement in MS interesting (http://www.terrywahls.com/). She attributes this to an effect on the mitochondria in the cells; I think her diet results in very low insulin which may contribute also to the improvement.

Finally, if you have another night when you are more hungry/more tempted than usual, try eating a little more protein (an ounce or two of cheese, nuts, meat – not processed meat).
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: Symptoms questions... Docs are "waiting to see"

Postby cardarlinow » Sat Dec 21, 2013 4:46 am

lyndacarol,

You have given me so much insight! Thank you!

Asian restaurants do use MSG. In fact, my husband is asian and I have spent a great deal of time over the last six years with his family overseas as well as here. My mother in law would come to visit and bring a jar of msg seasoning for when she does all her cooking. I've read a lot about msg and its effects but was very lax about it because I didn't think it affected me. Now, my husband and I are looking more into those kind of additives. We always request "no msg" at the restaurants and they gladly say they will do without and I do believe they do actually cook without it as we can tell a difference in taste. I've lived off of white rice for many years now since my husband and I have been together. My eating habits have switched to a mostly asian cuisine. I assumed it was healthier.. but over the past year I am starting to realize that maybe for me, it is not.

I emailed my doctor to inform them of my ( in my opinion) elevated sugar levels. Also asking for info on my other nutrients that we tested at the lab. A few weeks ago when we did the blood work, I heard from my doctor that my iron was low (11) and that my white blood count was high. Shortly after having my blood drawn I did come down with a "normal, going around town" bug. So I assumed that the wbc was high because of that. She wrote me a slip to redo my wbc. I waited until I felt like I was feeling better. I did redo it yesterday so hopefully it has come down now. But I was reading last night about an elevated wbc and autoimmune diseases. This time the wbc is with diff so hopefully we can figure out what that is all about. My doctor responded to my email to inform me that I do not need to worry about my sugar. That I do not have diabetes and that this is not the cause of the problem. I still think that my sugar levels are important. I'm not sure if I mentioned it before but I've always struggled with hypoglycemia.. so for it to "pre-diabetes" high, I think is personally important. She also mentioned that my vitamin B12 was in fact low "By neurology standards" meaning below the recommended 500 that most neurologists like to see it around.

My neuropathy ( I'm assuming because this is a new thing for me) has been bad the last few days. I've been dealing with a prick or shock feeling that starts in my foot and shoots up to my knee. It has been going on every 1-2 minutes for a course of 15 hours or so. I was avoiding my iron supplement ( probably wrong thing to do) all last week as I was starting the new vegan diet with sugar, and gluten restrictions. I was hoping that removing the irritating parts of my diet would help me absorb more iron. I was also worried about constipation as I deal with that on an every day basis and I'm worried about becoming dependant on laxatives. But, yesterday I started taking the iron again with a vitamin C supplement. It seems that the shock in my leg has gone away. I'm not sure if its coincidence or not. So we will see as I continue with the iron.

All of this talk about insulin and the affect on MS is quite interesting. With my first pregnancy, I gained quite a bit of weight without really changing a lot of my eating habits. My eating habits were somewhat poor but I had always been at a maintence level. My first son was early by about 2 weeks and was almost 9lbs. We didn't really think too much of it. My second pregnancy, I did not gain as much weigh as the first but I measured quite big for most of it. My blood sugars were checked three times during each pregnancy and each time it came back normal. My water broke five weeks early with my second son and he was 8lbs 14 ounces. We know my due date was correct and even though he was large, he had a lot of neurological symptoms of a preemie baby such as "newborn shakes" and he struggled to keep his blood sugar normal for the first couple days. According to my doctors, I never had gestational diabetes. However, they never tested me past 24 weeks. I am now wondering if I developed it late. I don't know if something like that can lurk and hide and go undetected but can cause something like this.

I have an extremely hard time losing weight. I'm 5'4" and 198lbs. I've been eating the healthiest I ever have over the last two weeks. Keeping my calorie range between 1200-1500 cals a day. And I never go hungry as I was living off of oven roasted veggies all day long. I just don't think the vegan diet is working for me. Especially after reading the terry wahls website you posted, last night. I have eaten a lot of beans and it has left me mostly bloated and uncomfortable and sluggish. My G.I. doc said I could have chicken and fish ( hormone free) So I think I am going to do away with the beans and focus on fresh vegetables and chicken and fish.

Also, My mother has many cardiac issues ( not serious at this point) such as angina, etc. She is also short and overweight, like me. Her cardiologist about ten years ago sent her in for some gene testing and found out that she carries a gene for gluten sensitivity. So I know.. there is a hereditary link on my moms side. Her cardiologist stated that in order for her children to be affected, we would have had to also have received a gene from my father. My father hasn't had any testing done and seems to be fine so I have always assumed ( mostly because of laziness and my addiction to carbs and sweets) that going gluten free up until now, was just not worth it unless I knew for sure. I have had a celiac blood test. But it came back negative. My G.I. doctor was going to test me again but when I reminded him that I had already been tested and that it was negative, but that my doctor had mentioned that often times the blood test for celiac can give a false negative. He stated, that "that's not true." I really don't know what to believe about that because I've read a lot online about the celiac blood test giving false negatives too.

Anyways.. Back on iron supplements.. but not vitamin b 12. Not sure why.. maybe she is waiting to see how the iron is affecting me and if thats the cause of the numbness and tingling. I never thought about insulin and a connection to MS. Diabetes also runs on my moms side ( where MS is present the most and we also have that hereditary link to gluten sensitivity) so, I feel like I am connecting many dots now, thanks to you!

Merry Christmas!
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Re: Symptoms questions... Docs are "waiting to see"

Postby jimmylegs » Sat Dec 21, 2013 7:34 am

hallo :)

11 is very low for iron. you'd be much better off around 80-90. fyi supplementing iron without balancing zinc can be trouble. ie adding only iron will push the zinc down. adding only zinc pushes the iron down.

fwiw I was vegan for 15 yrs before I was diagnosed. it's not a solution for everyone. ms patients are on average lower in zinc than healthy controls. vegetarians and vegans are also at risk for low zinc, iron, vit b12, vit d3, a bunch of things that are trouble in ms patients.

regimens-f22/topic2489.html
Suspect nutrients for MS patients include but are not limited to:

vitamin b complex (all of them, particularly b12)
vitamin e
vitamin d3
calcium
ferritin
magnesium
selenium
zinc
copper
essential polyunsaturated fatty acids

personally i would prioritize testing for zinc, magnesium, d3 and b12 first, the rest later. to help prioritize 'later' items, it's useful to look at interactions, eg getting a handle on how your zinc, ferritin and copper levels are doing.

SERUM tests (eg serum zinc, serum magnesium, serum 25(OH)vitD3, serum vit b12) for these items (serum lipid profile or serum PUFA for the last one) are a good first step and are most useful for comparison to similar measurements taken in various research studies. for several of the nutrients listed above, I have done some of the work of sifting through the available science on consistently healthy levels, to come up with some levels that look like reasonable targets. more on that below.


personally, I've had to request every nutrient test that has ever been done on me, for myself. with the possible exception of ferritin which is an extremely common issue in the general population.
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Re: Symptoms questions... Docs are "waiting to see"

Postby cardarlinow » Sat Dec 21, 2013 10:50 am

I had requested earlier for some more info on testing for other nutrients. Now I know that she did test for vitamin b12 because she said "by neurology standards ( over 500) mine would be considered low". Unfortunatly she didn't give me the score. I really think she wants to wait and see what my wbc comes back as. I've been hinting at the thought or possibility of MS for four years with her. And up until now, shes always shrugged me off. And even know, knowing that I have peripheral neuropathy ( without having diabetes) she still is not convinced even though she handed me info on MS. So I feel like she doesn't take me seriously. But I'll wait till all the test are back that I have done so far.

My G.I. doctor also wasn't very thorough. I met with him late because there was an accident on highway so he was be "gracious" enough to still see me but that it would be a quick appt. So I dont think he got the whole picture. So, I'm comfortable flexing the diet a little to try and see if something else works. I really do not believe that a vegan diet will work for me because Im sensitive to nuts ( gives me horrible stomach cramps) and eating beans causes me to bloat and feel full and uncomfortable. I know we tested my ferritin but I dont know what that was at. They normally send me my scores two weeks after I have them done but she hasn't yet. And its been 3 - 4 weeks. I hope thats not a sign that something is amiss. So we wait.
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Re: Symptoms questions... Docs are "waiting to see"

Postby jimmylegs » Sat Dec 21, 2013 11:22 am

I'm pretty impressed that your 'she' (neuro?) knew about the 500 proposed target for b12.
I'd have to go digging for the relevant studies but there is research out there linking zinc status to b12 absorption (and a few other important nutrients too)
it'll be great if you can get all your old results. it should be pretty manageable in this day and age - just the other day I watched my doc point and click lab results out of my chart and then just hit print and it spewed out just her selections for my records.

fyi, nuts and beans both contain phytates which bind important nutrients like zinc, magnesium, iron, etc etc etc.
the loss of these nutrients could easily contribute to GI distress.

that's not to say these foods should be removed from diet. they can be prepared in ways reduce the phytate content, and balanced with other nutrient dense foods to help compensate for any remaining phytate content.

wheat and gluten grains in general are excellent foods to limit. grains contain some pretty important phytonutrients, but you do have to beware of the nutrient drain associated with gluten. and the dynamics associated with imbalanced wheat flour fortification. oddly, even soil nutrition has an effect on how wheat affects people. essentially, zinc deficient soil = less happy wheat = more sensitive people.

rice is fine, but not white rice. brown rice and wild rice are far more nutrient-dense choices.

will be good to see which results you already have on hand. maybe it's just be the time of year slowing down the turn around time??
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Re: Symptoms questions... Docs are "waiting to see"

Postby lyndacarol » Sat Dec 21, 2013 1:15 pm

cardarlinow wrote:I emailed my doctor to inform them of my ( in my opinion) elevated sugar levels. Also asking for info on my other nutrients that we tested at the lab. A few weeks ago when we did the blood work, I heard from my doctor that my iron was low (11) and that my white blood count was high. Shortly after having my blood drawn I did come down with a "normal, going around town" bug. So I assumed that the wbc was high because of that. She wrote me a slip to redo my wbc. I waited until I felt like I was feeling better. I did redo it yesterday so hopefully it has come down now. But I was reading last night about an elevated wbc and autoimmune diseases. This time the wbc is with diff so hopefully we can figure out what that is all about. My doctor responded to my email to inform me that I do not need to worry about my sugar. That I do not have diabetes and that this is not the cause of the problem. I still think that my sugar levels are important. I'm not sure if I mentioned it before but I've always struggled with hypoglycemia.. so for it to "pre-diabetes" high, I think is personally important. She also mentioned that my vitamin B12 was in fact low "By neurology standards" meaning below the recommended 500 that most neurologists like to see it around.

My neuropathy ( I'm assuming because this is a new thing for me) has been bad the last few days. I've been dealing with a prick or shock feeling that starts in my foot and shoots up to my knee. It has been going on every 1-2 minutes for a course of 15 hours or so. I was avoiding my iron supplement ( probably wrong thing to do) all last week as I was starting the new vegan diet with sugar, and gluten restrictions. I was hoping that removing the irritating parts of my diet would help me absorb more iron. I was also worried about constipation as I deal with that on an every day basis and I'm worried about becoming dependant on laxatives. But, yesterday I started taking the iron again with a vitamin C supplement. It seems that the shock in my leg has gone away. I'm not sure if its coincidence or not. So we will see as I continue with the iron.

All of this talk about insulin and the affect on MS is quite interesting. With my first pregnancy, I gained quite a bit of weight without really changing a lot of my eating habits. My eating habits were somewhat poor but I had always been at a maintence level. My first son was early by about 2 weeks and was almost 9lbs. We didn't really think too much of it. My second pregnancy, I did not gain as much weigh as the first but I measured quite big for most of it. My blood sugars were checked three times during each pregnancy and each time it came back normal. My water broke five weeks early with my second son and he was 8lbs 14 ounces. We know my due date was correct and even though he was large, he had a lot of neurological symptoms of a preemie baby such as "newborn shakes" and he struggled to keep his blood sugar normal for the first couple days. According to my doctors, I never had gestational diabetes. However, they never tested me past 24 weeks. I am now wondering if I developed it late. I don't know if something like that can lurk and hide and go undetected but can cause something like this.

I have an extremely hard time losing weight. I'm 5'4" and 198lbs. I've been eating the healthiest I ever have over the last two weeks. Keeping my calorie range between 1200-1500 cals a day. And I never go hungry as I was living off of oven roasted veggies all day long. I just don't think the vegan diet is working for me. Especially after reading the terry wahls website you posted, last night. I have eaten a lot of beans and it has left me mostly bloated and uncomfortable and sluggish. My G.I. doc said I could have chicken and fish ( hormone free) So I think I am going to do away with the beans and focus on fresh vegetables and chicken and fish.

Also, My mother has many cardiac issues ( not serious at this point) such as angina, etc. She is also short and overweight, like me. Her cardiologist about ten years ago sent her in for some gene testing and found out that she carries a gene for gluten sensitivity. So I know.. there is a hereditary link on my moms side. Her cardiologist stated that in order for her children to be affected, we would have had to also have received a gene from my father. My father hasn't had any testing done and seems to be fine so I have always assumed ( mostly because of laziness and my addiction to carbs and sweets) that going gluten free up until now, was just not worth it unless I knew for sure. I have had a celiac blood test. But it came back negative. My G.I. doctor was going to test me again but when I reminded him that I had already been tested and that it was negative, but that my doctor had mentioned that often times the blood test for celiac can give a false negative. He stated, that "that's not true." I really don't know what to believe about that because I've read a lot online about the celiac blood test giving false negatives too.

Anyways.. Back on iron supplements.. but not vitamin b 12. Not sure why.. maybe she is waiting to see how the iron is affecting me and if thats the cause of the numbness and tingling. I never thought about insulin and a connection to MS. Diabetes also runs on my moms side ( where MS is present the most and we also have that hereditary link to gluten sensitivity) so, I feel like I am connecting many dots now, thanks to you!


I refer you again to part two of the presentation by Gary Kaplan, D.O. (http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo). Remember, the gluten sensitivity issue is a wide spectrum, ranging from one extreme of total gluten tolerance to the other extreme of celiac disease. I think many of us fall into the intermediate degrees of gluten sensitivity. Kaplan is talking about the atypical form of the far extreme of celiac disease, but I think much of it can be applied to us (in the middle range): iron deficiency, neurologic disorders [most often ataxia (difficulty walking or standing), but also neuropathies ( sensory: numbness, even pain)], migraines (your eye doctor diagnosed you with "ocular migraines").

His recommendation is to stop wheat/gluten TOTALLY – 100% clean – for at least six weeks, regardless of what the lab tests are showing. (According to Kaplan, your doctor who mentioned that blood tests for celiac can give a false negative was correct!)

I was very interested to hear about your two pregnancies; I gained about 25 pounds while pregnant with my son, but his birth weight was 8 lbs. 15 oz. I think it is entirely possible that your blood sugar never went high enough to be diagnosed with gestational diabetes because your pancreas was pumping out so much insulin to keep it down. (Of course, insulin is not routinely tested.) But it is also possible that your blood sugar did rise undetected in those last weeks.

In one of your paragraphs you mentioned ("… constipation as I deal with that on an everyday basis…"); remember, excess insulin affects the smooth muscles – the smooth muscles of the intestines normally cause peristalsis (contractions that keep things moving along).

And in your last paragraph, you mentioned diabetes runs on the side of your family where MS is present the most; type II diabetes is also called hyperinsulinemia (excess insulin)! Again, I encourage you to request a "fasting blood insulin test" along with testing for gluten sensitivity; with your mom's history maybe that's a good idea for her, too.

As a side note, there are three macronutrients in the human diet: carbohydrates, protein, and fats. Protein and fats are absolutely necessary for good health; carbohydrates are NOT necessary (But they are SO tasty!). Especially with low iron, make sure you are eating enough protein – how about a nice beef prime rib for Christmas? Enjoy!
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: Symptoms questions... Docs are "waiting to see"

Postby jimmylegs » Sat Dec 21, 2013 4:07 pm

this interesting study shows the importance of monitoring - blanket dietary recommendations can be tough. if you have each person implementing to suit their own individual preferences, you can end up with all kinds of different things going on. given that scenario, no wonder a diet can work great for one person and not help at all for another.

Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years
http://onlinelibrary.wiley.com/doi/10.1 ... 283.x/full
interesting excerpt from the discussion
Our findings can hardly be explained by persistent intestinal malabsorption. The series was in biopsy-proven remission and showed normal serum zinc recordings, a highly sensitive marker of the mucosal state of the upper intestinal tract according to Jameson et al.
so of course I had to look check out the serum zinc levels
..............................Males (n = 12)......Females (n = 18)..Reference range
Serum zinc (µmol/L)  15.4 (14.2–16.6)  13.4 (12.8–14.0)...11–17.7
another wacky normal range.. too bad they didn't include a group of super healthy controls for comparison, so you could see the whole picture.

regardless of zinc, the study appears to demonstrate that gluten free is not the be all and end all:
It is generally assumed that coeliac patients adhering to a strict gluten-free diet for years will consume a diet that is nutritionally adequate. ... Our results may indicate otherwise. We found signs indicative of a poor vitamin status in 56% of treated adult coeliac patients, including six on folate supplementation.
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Re: Symptoms questions... Docs are "waiting to see"

Postby jimmylegs » Sat Dec 21, 2013 4:21 pm

this study from 1981 found no effect of oral zinc on celiac patient status..

Oral zinc supplements in non-responsive coeliac syndrome: effect on jejunal morphology, enterocyte production, and brush border disaccharidase activities.
http://gut.bmj.com/content/22/3/194.full.pdf
"Plasma zinc levels were reduced before treatment and rose to normal levels with therapy; mucosal zinc was normal before treatment and increased after therapy. Oral zinc supplementation did not alter the villous morphology, intra-epithelial lymphocyte count or in vitro enterocyte production rate. In addition, there was no improvement in the clinical status of the patients."

these patients - all three of them - had negligible zinc to start with (low single digits, units = umol/L), and were still low to outright deficient at the end of the study, after their zinc therapy (only one of them got into the double digits). no wonder there was no effect!
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