This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everyone, I am sitting here now at my computer feeling nervous, sad, confused, yet certain. I have just gotten back from seeing a neurologist for some symptoms...

He has ordered an MRI, scheduled Tuesday morning.

My biggest fear isn't that I have MS, but that nothing is found. I fear being called a faker.

Starting several years ago, I had bouts of fatigue, where I just couldn't seem to do anything. Who knows, maybe there is some depression involved, but I never saw a doctor, and it mysteriously would go away.

I have also had several very weird things happen to me over this period of time; my big toes went numb, which I attributed to ill fitting Army boots. A few months after that I noticed that my forehead had lost sensation as well, and at the same time my nose became oversensitive; very itchy, almost maddeningly so. I figured it had to do with, of all things, maybe breaking my nose at birth or something. (it's funny how stupid this sounds now, but I was just looking for answers.)
Oh, and I completely MELT in the HEAT.
Throw in several bladder infections, and bladder-almost-infections, (diagnosed as interstitial cystitis,) and I just thought I was one weird girl.

My left eye has always given me problems; ever since I was a teenager, I would go blind in my left eye for a few minutes, then it would clear up. It started as once or twice a year, then every few months, then monthly, now it's several times a month.

Then one day, I suddenly lost some hearing in my left ear. Not much hearing loss, but enough to notice a difference. A visit to the ER complete with CT scan showed nothing, and I gave up quickly because I thought I had been shot down. It cleared up in few weeks and I pretty much had forgotten about it and just added it to my pile of weird transient symptoms.

I moved on, got married, and had two kids. Both pregnancies had some really strange complications. I had pelvic instability with my first. It was horrible and terribly painful to where I was a crying heap on the floor, and my lovely husband picked me up and carried me to where I needed to go. With my second pregnancy I had placenta previa, AND pre-eclampsia. I also had a terrible time with heartburn and palpitations. I ended up having to be induced a full month early because my bp was through the roof. (baby's ok btw, he's ten months now and walking)

Now I'm dealing with the old fatigue and numbness in my fingers and hands. I feel like a sticker is stuck to the bottom of my foot, and left hand. My left leg is tired and twitchy. In fact, I have twitches all over my body. Sometimes it feels like I can barely lift my arm in order to drive. My lips go numb some days, and the blindness in my left eye has a new companion; just this last month, the left side of my face also goes numb, and that will last all day.
I have had tinnitus as long as I can remember, only now it is intrusive. I can hear it over conversations now.
I sound like a moron, mixing up words in my sentences (I'll say something like, "Let's medicine put on you", instead of "Let's put medicine on you,") saying the wrong word (today I called a real estate agent a "house person,") stuttering like a Stanley, or just saying, "....uhhhhh".
Typing is also poor on some days. I'll do things like add letters, (not typos) spelling "c" words with "k", (I'm a grammar Nazi, so this is particularly frustrating!)
When I finally saw a neuro, he tested my reflexes and he said they were a "bit brisk". (I wish I had saw him a few days earlier, my whole right leg would jump up and down...now I realize it was clonus, but I didn't think it was significant then, and like an idiot, failed to mention this to the Dr.)

I know among other things, he's considering an MS as a possibility. (he also ordered a lupus test, but I don't feel like it's lupus)

One of my questions is it seems that EVERY DAY I feel a bit different. Is that consistent with MS? Some days are better, some are worse. I thought that MS takes longer to deviate. Some symptoms last only minutes, some a day, some for weeks, months, years...

For those of you who have MS, my condolences, and does this seem like MS, or something else to you?

(EDIT: I forgot to mention that sometimes I can't pee...but luckily I have weak pelvic floor muscles anyway and I was able to urinate after pushing it out like a bm. TMI?)

Oh, I have migraines...lots of them.

hi and welcome
curious if any docs have sent you for evaluation/testing with a nutrition specialist?
some of your symptoms seem pretty readily attributable to nutrient deficit.. but, it's hard to say for sure without some test results in the mix.

abbadackerygirl wrote:I have just gotten back from seeing a neurologist for some symptoms...

He has ordered an MRI, scheduled Tuesday morning.

My biggest fear isn't that I have MS, but that nothing is found. I fear being called a faker.

Starting several years ago, I had bouts of fatigue, where I just couldn't seem to do anything. Who knows, maybe there is some depression involved, but I never saw a doctor, and it mysteriously would go away.

I have also had several very weird things happen to me over this period of time; my big toes went numb, which I attributed to ill fitting Army boots. A few months after that I noticed that my forehead had lost sensation as well, and at the same time my nose became oversensitive; very itchy, almost maddeningly so. I figured it had to do with, of all things, maybe breaking my nose at birth or something. (it's funny how stupid this sounds now, but I was just looking for answers.)
Oh, and I completely MELT in the HEAT.
Throw in several bladder infections, and bladder-almost-infections, (diagnosed as interstitial cystitis,) and I just thought I was one weird girl.

My left eye has always given me problems; ever since I was a teenager, I would go blind in my left eye for a few minutes, then it would clear up. It started as once or twice a year, then every few months, then monthly, now it's several times a month.

Then one day, I suddenly lost some hearing in my left ear. Not much hearing loss, but enough to notice a difference. A visit to the ER complete with CT scan showed nothing, and I gave up quickly because I thought I had been shot down. It cleared up in few weeks and I pretty much had forgotten about it and just added it to my pile of weird transient symptoms.

I moved on, got married, and had two kids. Both pregnancies had some really strange complications. I had pelvic instability with my first. It was horrible and terribly painful to where I was a crying heap on the floor, and my lovely husband picked me up and carried me to where I needed to go. With my second pregnancy I had placenta previa, AND pre-eclampsia. I also had a terrible time with heartburn and palpitations. I ended up having to be induced a full month early because my bp was through the roof. (baby's ok btw, he's ten months now and walking)

Now I'm dealing with the old fatigue and numbness in my fingers and hands. I feel like a sticker is stuck to the bottom of my foot, and left hand. My left leg is tired and twitchy. In fact, I have twitches all over my body. Sometimes it feels like I can barely lift my arm in order to drive. My lips go numb some days, and the blindness in my left eye has a new companion; just this last month, the left side of my face also goes numb, and that will last all day.
I have had tinnitus as long as I can remember, only now it is intrusive. I can hear it over conversations now.
I sound like a moron, mixing up words in my sentences (I'll say something like, "Let's medicine put on you", instead of "Let's put medicine on you,") saying the wrong word (today I called a real estate agent a "house person,") stuttering like a Stanley, or just saying, "....uhhhhh".
Typing is also poor on some days. I'll do things like add letters, (not typos) spelling "c" words with "k", (I'm a grammar Nazi, so this is particularly frustrating!) (I think this qualifies as "brain fog".)
When I finally saw a neuro, he tested my reflexes and he said they were a "bit brisk". (I wish I had saw him a few days earlier, my whole right leg would jump up and down...now I realize it was clonus, but I didn't think it was significant then, and like an idiot, failed to mention this to the Dr.)

I know among other things, he's considering an MS as a possibility. (he also ordered a lupus test, but I don't feel like it's lupus)

One of my questions is it seems that EVERY DAY I feel a bit different. Is that consistent with MS? Some days are better, some are worse. I thought that MS takes longer to deviate. Some symptoms last only minutes, some a day, some for weeks, months, years...

For those of you who have MS, my condolences, and does this seem like MS, or something else to you? (COULD be MS – or a million other conditions)

(EDIT: I forgot to mention that sometimes I can't pee...but luckily I have weak pelvic floor muscles anyway and I was able to urinate after pushing it out like a bm. TMI?) (Excess insulin thickens and stiffens smooth muscles; the muscles controlling the urinary bladder, the detrusor sphincter muscles, are smooth muscles. I suspect that excess insulin has affected your bladder muscles.)

Welcome to ThisIs MS, abbadackerygirl.

First, you may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities. Generally, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. Your reaction to heat ("completely MELT in the HEAT") is a common symptom of MS.

YOU DESCRIBED REAL SYMPTOMS; YOU ARE NOT A FAKER!

You have seen a neurologist, he ordered an MRI; compare his plan for investigation to these suggestions from the University of Chicago (Your numb toes, numbness in fingers and hands is called "peripheral neuropathy."):

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 (In addition, magnesium, zinc, copper, and vitamin D tests are urged by jimmylegs, here at TIMS.)
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test (I believe a separate "fasting blood insulin test" also should be done.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Non-celiac gluten sensitivity causes many problems.)
Lyme disease
HIV/AIDS
Hepatitis C and B

I have no medical background, but I suspect that wheat/gluten sensitivity may start a cascade of neurological symptoms. A fellow member (who is an RN) at ThisIsMS has posted, "Gluten ataxia is exactly like MS clinically, even looks the same on MRI but IS in actuality a gluten disease exactly like celiac but with the target being the brain.

If people want to be tested all they need to do is go to the doctor and ask for a celiac panel, but do it while still eating gluten (if you go off gluten that panel will be negative). If you produce antigliadin antibodies etc on the test then talk to the neuro about gluten ataxia---but I bet the vast majority of people on TIMS were not given that simple blood test as not that many neuros test for it.

The cure for GA is a gluten-free diet and it is an actual cure."

In December, Dr. Amy Myers, M.D. spoke on gluten sensitivity: http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.
@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity
@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.


Gary Kaplan, D.O. and his 7-part presentation on Celiac Disease, which is the extreme end of gluten sensitivity spectrum:

In part 2 of his 7-part presentation on celiac disease, Gary Kaplan, D.O., describes the 4 forms of the disease: 1. Typical; 2. Atypical or Extra-intestinal; 3. Silent; 4. Latent

@ 0:30 he says that the Atypical/extra-intestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility
neurologic symptoms (ataxia, neuropathies)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders – list available at http://www.aarda.org
migraines


As you will discover, each of us here at TIMS has his/her own unique ideas about MS. Mine now revolve around gluten and insulin. (As I share my ideas, remember that I have no medical background.) The following sentence, however, is scientific fact: Pregnancy is one of two times in life (Puberty is the other time.) when a woman is in an insulin resistant state (her body is producing increased insulin in order to gain weight and, during pregnancy, put weight on the fetus). I suspect that the mother's body often does not revert to normal secretion immediately after delivery of the baby. Obviously, your symptoms began much before your pregnancies (perhaps with gluten sensitivity), but the increased insulin production DURING pregnancy led to a continuation: I believe that your pancreas did not return to normal insulin production after your baby was born. Since your symptoms persist, I believe your pancreas continues to produce excess insulin today. If you request your GP to order a "fasting blood insulin test" (which is NOT the same as a glucose/blood sugar test), this problem can be ruled out if your insulin level is in the optimal 3 UU/ML or lower range.

By the way, nutrient deficiency is common with gluten sensitivity… Magnesium deficiency is one of these… I understand that magnesium is given for preeclampsia… Perhaps this also indicates gluten sensitivity at the time of your second pregnancy.

This is only one cause for excess insulin production (and, of course, cannot be the mechanism in men, children, virgins, or menopausal women). Diet (gluten, carbohydrates, artificial sweeteners, trans fats, MSG, BPA) can also trigger increased insulin levels - whole wheat bread and artificial sweeteners can do this more than common table sugar! Pancreatic infection/inflammation can also affect insulin levels.

We wish you all the best. Let us know how it goes.

it's smart to know where your nutrient levels are. you can be depleted for numerous reasons, one of which may indeed be gluten overconsumption.

pregnancy, athleticism, alcoholism, stress, use of certain medicines, and inadequate or imbalanced dietary essential nutrient intakes are some others.

gluten avoidance can help reduce nutrient loss, but does not get rid of other contributing factors, and will not on its own replenish a chronically depleted system.

luckily there's lots you can do with diet and nutrition testing together

Hi again, thank you for looking my symptom list over. That is an interesting theory, and I have also heard Alzheimer's being linked with insulin intolerance as well.

I did however forget to mention that my PCM thinks that it is extremely likely that I also have an Ehlers-Danlos variant. I can easily dislocate several joints, and it's making my grip horrible already. I have read that there is a connection between E-D and MS. It is not the same as arthritis, although joint damage can occur from luxations from doing something as simple as swinging my leg off of the side of the bed. >:( Thankfully though, it seems to be a rather mild case; I have seen some who are truly crippled from the disorder.

Would celiac disease still come into play in this scenario?

have you seen this individual's write up on EDS?

http://www.ctds.info/ehlers_danlos_diet.html

there's a bit in there on celiac illness, but I don't think that author has really tracked down how to get key nutrient levels into the optimal range - just has a suspicion that the test results can't be right. I wonder if there would be any inflammatory response to wheat if this person's zinc status was high normal?

abbadackerygirl wrote:I did however forget to mention that my PCM thinks that it is extremely likely that I also have an Ehlers-Danlos variant. I can easily dislocate several joints, and it's making my grip horrible already. I have read that there is a connection between E-D and MS. It is not the same as arthritis, although joint damage can occur from luxations from doing something as simple as swinging my leg off of the side of the bed. >:( Thankfully though, it seems to be a rather mild case; I have seen some who are truly crippled from the disorder.

Would celiac disease still come into play in this scenario?

Like you, I have heard of the Alzheimer's/insulin link. In fact, I have read that some researchers call Alzheimer's disease "type III diabetes."

Rather than as in diabetes, which is determined by a high glucose/blood sugar level, I think that Alzheimer's is more accurately determined by too much insulin in the body. Dr. Dennis J Selkoe of Harvard University has found that the Insulin-Degrading Enzyme (IDE) removes insulin first and then, if any IDE is a leftover, breaks down amyloid beta (which is the suspect cause of Alzheimer's). When the amount of insulin requires all the IDE, amyloid beta is allowed to accumulate in the brain, resulting in Alzheimer's.

So, in the case of Alzheimer's, a diet that will not trigger excess insulin production should help. Dr. Mary Newport found that a diet high in coconut oil (a medium-chain fatty acid often used in a ketogenic diet) has improved her husband Alzheimer's disease. I suspect there is less glucose (and, consequently, less insulin) in his bloodstream and his cells have switched from burning glucose to burning ketones as their energy source.

To your question… In my earlier post both Dr. Myers' list (of gluten sensitivity symptoms) and Dr. Kaplan's list (of Atypical celiac symptoms) included "joint pain." It would seem possible to me that the gluten/gliadin protein may contribute in some way to the Ehlers-Danlos.

I have read Wheat Belly by Dr. William Davis and Grain Brain by Dr. David Perlmutter, and recommend both books. I do not recall if either one addressed Ehlers-Danlos specifically, but I will look into it.

EDIT: I have checked both books mentioned above and have found no specific reference to Ehlers-Danlos. Both authors explained that wheat (through visceral fat) causes inflammation, and this inflammation leads to many chronic diseases (unspecified, but might include E-D, in my opinion – even MS).

My own grandmother has Alzheimer's which is why I've read up so much on it. She is away, visiting California right now, but as soon as she gets back we are going to be putting her on a high coconut oil diet. She has progressed quite far, and any improvement will be noticed.

What about coconut oil for ms? Any thoughts?

abbadackerygirl wrote:My own grandmother has Alzheimer's which is why I've read up so much on it. She is away, visiting California right now, but as soon as she gets back we are going to be putting her on a high coconut oil diet. She has progressed quite far, and any improvement will be noticed.

What about coconut oil for ms? Any thoughts?

Because I think excess insulin is fundamentally involved in my MS symptoms, my aim is to reduce the amount of insulin my body makes. Due to YEARS of a high carb diet, especially wheat (which quickly converts to glucose), my pancreas has secreted more and more insulin as my cells became more and more insulin resistant.

This was necessary to force the cells to accept glucose, which was the primary fuel source. Fats (in the form of ketone bodies) can be used quite satisfactorily as an alternative fuel if glucose is not available. Coconut oil is readily used as fuel. My intent is to change my body's fuel source from glucose to ketones – by severely limiting anything that triggers my pancreas to produce insulin (I recently even began eating gluten-free.) and by increasing ketones (I now fry my daily egg in coconut oil; since coconut oil can be absorbed through the skin, I even used it as a cream or moisturizer.). I encourage the use of coconut oil.

jimmylegs wrote:have you seen this individual's write up on EDS?

http://www.ctds.info/ehlers_danlos_diet.html

there's a bit in there on celiac illness, but I don't think that author has really tracked down how to get key nutrient levels into the optimal range - just has a suspicion that the test results can't be right. I wonder if there would be any inflammatory response to wheat if this person's zinc status was high normal?

Sorry, I didn't mention this earlier, but thank you. I have taken zinc in the past, and I discovered that horrible metallic taste, and that usually means that my zinc levels were in the normal range.

There are a few other symptoms I didn't mention, but only because I haven't had one of them for at least five years, so I didn't think it mattered, but today, after reviewing SEVERAL websites, blogs, wikis, and personal stories, I think it is DEFINITELY worth mentioning.

I used to get HORRIBLE genital sores and was "diagnosed" as having herpes, (I was still a virgin, btw) even though THREE TESTS came back negative. I also get mouth sores often, (still do) but they were always small, whereas my genital sores were enormous ulcers that literally looked as if someone poured acid on the inside of my labia. (coming clean time after all)

With that being said, I was wondering if I actually had Behcet's for a few years. I worked in a veterinary office and had access to needles and things, and one of the tests is to prick the inside of your arm with a sterile needle. If a papule showed up, it was considered a positive reading for a biomarker of Behcet's. I tested myself because I was SURE I didn't have herpes. I had never even had a cold sore! I indeed got a papule.

So many things look like MS, so many things look like Lupus...so many things look like Behcet's. Some symptoms don't line up with either one, though...do simultaneous diagnoses ever occur?

I don't want either of them, but I don't want to remain undiagnosed either. Something tells me if I had mentioned the sores, I would have already been diagnosed with Behcet's. I REALLY don't want Behcet's. Subconsciously, maybe it was my fear of that that caused me to fail to mention. Who knows?

So now it comes down to the MRI and the Lupus screening.

My husband is so wonderful, but I know he is confused.

I am sorry that I keep forgetting to disclose, but I really don't know what to say and what not to say. I don't want to end up leading the doctor in the wrong direction.

Please note that in the answer to the fourth question, "What are the symptoms of gluten sensitivity?" one of the symptoms listed in the last sentence is "mouth ulcers."

What are the symptoms of gluten sensitivity?
Although there may be no detectable symptoms of the immune response to gluten, the typical symptoms people develop occur when the reaction begins to damage the intestines. The symptoms, resulting from malabsorption or improper digestion of dietary nutrients, include abdominal bloating or pain, diarrhea, constipation, gaseousness, or nausea with or without vomiting. It appears that acid reflux in the esophagus, manifesting as heartburn, may be a potential symptom as well. Other symptoms people experience include fatigue, joint pains, mouth ulcers, bone pain, abnormal menses in women, and infertility.

Also note that "any autoimmune syndrome" and "peripheral neuropathy" are in the list of people with certain diseases that are at greater risk of developing gluten sensitivity and who should be tested:

https://www.enterolab.com/StaticPages/Faq.aspx

interesting, I never got a metallic taste from zinc supplements, deficient or otherwise.

I have read about the zinc taste test where zinc is diluted in water. was that what you had tried?

depending how long ago all that was, it might be worth a current blood test, to get either a verification or to definitively rule it out.

Thanks again everyone,
I have noted that oral ulcers are present in celiac disease, but I haven't heard anything about genital ulcers...

And Jimmylegs, I can't remember how I was taking the supplements...but I do know that I despise the flavor of zycam, which is zinc based.

I'll keep y'all informed...

ok here we go. before delving into nutrient optimization I frequently suffered mouth sores and gluten sensitivity. all that is gone now that I know my target levels and work to stay on track with them
not long ago I also had chronic sores on my inner bum cheek, those cleared up for good specifically around the time I figured out I was zinc deficient and corrected it.
I suspect it was a zinc deficiency related periorificial lesion - there's published science about those, and it doesn't matter which orifice

as for zycam, you mean this? sounds terrible :S
http://en.wikipedia.org/wiki/Zicam
"Zicam is a branded series of products marketed for cold and allergy relief whose original formulations included the element zinc" weird - wonder when that changed..

how's your diet for zinc rich foods? zinc depleters? (eg gluten, phytates, dairy, sugar, alcohol?)