This Is MS Multiple Sclerosis Community: Knowledge & Support

[Lorielynnjackson]

Thanks for letting me join. I will give you my history and am looking for someone who maybe had a similar situation or can help point my Drs in the right direction? If any of this sounds familiar, I am very open to listening to all stories.... I am 37 yrs old.
For the last 5 yrs I have felt slightly nauseous in the mornings. Had incredibly irregular periods, bleeding out once or twice a month, would bleed out every month, and pain in my belly button. Terrible low back and hip joint pain, knee pain, migraines, tachycardia and my blood pressure was high...
I eventually had to go to the gynocologist to be checked because the bleeding was so bad... he was going to put me on the pill to control it, but my heart rate was 120, my blood pressure was 160/100. I went to the Cardiologist who confirmed tachycardia high blood pressure (prescribed beta blockers), and then the gynocologist put me on the pill Yaz. They confirmed an umbilical hernia. Three months later, I had that operated. Right after the umbilical hernia was repaired, i was ill, no food no drink for two weeks, then the very large pulmonary embolism in my lower left lung. then they took my gallbladder, because that was what was making me ill. For a little while i was ok, but the bleeding continued... so they found a para ovarian cyst on left ovary, and my uterus tissue had grown into the muscle. So I had a hysterectomy. Awhile after that, i started having spasms in my biliary sphincter of oddi. They did a sphincterotomy, which fixed the problem temporarily (with a minor incident of my sphincter sucking up the pancreatic protective plastic), and the problem came back, so they did a second one. Drs decided this was what caused the death of my galllbladder... Then, i was still, nauseous. So after PH and manometry they diagnosed bile/acid reflux... significant amounts. So they did the Nissen Fundoplication. Which also worked temporarily but now am sick again.(I suspect failure). the drs keep saying that if there is a minute chance of a bad reaction (like 1% of people have this side effect, well that's me)... weird. All of this has happened in the last 1.5 yrs. Kind of like a crash and burn. At the moment I have the following symptoms:
insomnia (hard to fall asleep- hard to go back to sleep once awake, sometimes no sleep at all)- been going on for years.
behind neck goes numb when
chest pain sometimes. strong. waves. esophegeal spasm? hiatal hernia. warm in that area when i have lots of pain.
stomach spasm.
surgery area tenderness
once a day diahrrea. if not in morning later in day. starts in epigastric region. slowly moves down.
left rib pain back(since the pulmonary embolism/gall bladder)
morning sickness back
liquid and metallic taste?
legs and arms go numb really easy? sometimes fingertips just go numb no reason.
nose twitching for 2 weeks stopped. then lower left eye started...
5 days now.
insomnia (this has been going on a while)- hard time getting to sleep. got better shortly after the surgery but its back again.
heart and blood pressure racing after eating anything.
sometimes choking or mis swallowing? usually after a weird feeling in chest.
back pain after eating. left side. mid back. under armpit (periodically when pain is bad)
hip pain/back pain. joint pain. seems worse at night and in morning.(going on for a long time)
hiccups. every 15 min or so. more after food or drink. doesn't matter what kind. starts right when i wake up. eye twitching starts.
vision. seems to have gotten worse very quickly?
eye dr said might be a result of surgery but progressive?
sometimes left eye blinks slower? vision worse in left. twitching below left eye. starts in morning, less during day and more in evening. stomach problems left. problem right brain? or vagal nerve? problems and pain mostly located on left.
lump in mid spine. inflamed. sore. could this cause digestive problems.
inflamed gums. usually in the morning. reflux?
(had this before surgery, it has come back)
incontinence at night. 2 accidents with diarrhea.
woke up in feces.
have i been checked for gluten intolerance?
tremors. intermittently when i'm trying to do something with my hands. or if i'm in a hurry.
after eating racing heart, nausea, more hiccups, pain epigastric, .nausea....10-40 minutes or so after but happens all day periodically.
when eating. hiccups. chest pain (behind sternum and breasts)comes in waves. then another hiccup then pain in waves. area feels warm. chest feels like its been punched. mostly after meals. even snacks. or drinks.
The hiccups are terrible, make me sicker. My vision seems to have recently taken a turn for the worse (one eye only)...
And more symptoms I am sure I'm leaving out... Am I the only one like this? The drs are baffled and are thinking of sending me to the neurologist to see if it is one gremlin causing it all, because if so, they won't bother to surgically correct anything? Does any of this sound familiar?
Thank you for your listening ear and I appreciate anyone who responds to this message (i know its long, but i'm scared)
Lorie

[jimmylegs]

hi wow that is a long list of troubles sorry to hear.
have any docs sent you for in-depth nutritional evaluation with a specialist?
is there any possibility your diet could be a contributing factor? hard to eat well when you're feeling sick :S

[Lorielynnjackson]

Hi Jimmy,
No they haven't sent me to a nutritionist yet...I don't think that's the problem but I also think that I might be aggravating whatever the problem is. It has been going on so long now and am so tired, and the drs are running out of ideas... At the moment, I have a 2x gastro, cardio, gyno, pulmonary, and a surgeon who have been trying to hunt down this intermittent gremlin. I feel like my body is slowly shutting down, and the more they fix it the more they aggravate it, but if they don't i'm even more miserable... They are suggesting neurological problems because of certain symptoms I am having and that the surgical procedures i have been reacting badly... i have been told to stay away from almost everything that is good for me, raw veggies (too hard to digest), dairy (just in case its causing diarreah) , beans (gas), any foods that promote bile production as I have too mulch already... and when i eat the carbs, my tummy settles a bit, and I put on a few pounds but then I fee like crap in pain etc. if I eat smoothies I lose my appetite, too boring plus i lose weight ... so i have been eating in baby increments... the spasms, nausea and pain are the worst ones, tachycardia aggravates the nausea... just seems like a neverending circle... perhaps I will question the drs about nutritionist...
thanks for the input...

[jimmylegs]

you might want to have a read of this post. just for ideas on tests to ask for, typical problems with results interpretation, and targets for healthy controls. if you get some lab work done you can see how far your levels might be from average healthy joe's: http://www.thisisms.com/ftopict-2489.html
good information to have in hand should you get referred to a nutrition specialist. sounds like it would be smart either way given all your restrictions.
hope they find you some answers soon. if I had more time I would show you some links from your various symptoms to potential nutritional deficits. but really, you can do it yourself to a large extent. just take any symptom and put it in a google search with the word deficiency, and see what the system comes up with. for more authoritative results, use scholar.google.com to only search scientific papers. hope that helps!

examples for tachycardia deficiency

https://www.google.ca/#q=tachycardia+deficiency
http://scholar.google.ca/scholar?as_ylo ... as_sdt=0,5

off the top you can see iron, magnesium, potassium and b12 are mentioned - there are targets for all three of those here http://www.thisisms.com/ftopict-2489.html

magnesium testing is notoriously poorly interpreted and b12 not much better. you really need to know what you're after level wise before you go in.

[bartman]

If I had a million dollars I would bet what you have are serious infections called Lyme, Bartonella and Babesia. These infections are very difficult to test for and very difficult to treat and each of them need to be treated. This is why Lyme disease is the most controversial disease in the history of medicine...I would not be surprised if your doctors have not even considered it, as it is very political. Please educate yourself on these infections and controversy in treating and diagnosing and maybe that will lead you in the right direction. I would check out a lyme disease forum too.

[jimmylegs]

on susceptibility to infection (right up to and including HIV AIDS) and nutrition status

https://www.google.ca/#q=infection+micr ... deficiency

http://scholar.google.ca/scholar?start= ... as_sdt=0,5

iron is there again, as are vits A, C, E, selenium and zinc.

I don't have particular targets for vits A, C, or E, and selenium is a bit of a toughie target wise as well, but you would find some info on the summary page I linked to above and in my auto signature. zinc is pretty easy.

I just noticed the mention of hiccups. ... I'd place bets on magnesium re the hiccups and twitching. could be a simultaneous potassium issue in the mix too.

[lyndacarol]

Welcome to ThisIsMS, Lorie. We are glad you found us. We are all looking for answers ourselves. We are happy to share our experiences, our opinions, and the information we find.

My suspicions of my symptoms revolve around excess insulin production in the pancreas, initiated in my case by gluten sensitivity and a lifelong, heavy carb diet. So here are my questions:

You have mentioned migraines, joint pain – these are common symptoms in the Atypical form of gluten sensitivity/celiac disease. Initially, doctors order blood tests to determine gluten sensitivity (but these tests are notoriously unreliable).

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

@ 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



A biopsy is usually the next step, taking samples from several locations in the small intestine. There is now a test that is noninvasive and claims a higher rate of accuracy: https://www.enterolab.com/StaticPages/Faq.aspx

I did not understand your question, "have i been checked for gluten intolerance?" If testing has not been done, I think it is a logical place to begin (especially with so many gastrointestinal symptoms).

You mentioned "legs and arms going numb really easy? Sometimes fingertips just go numb no reason." This is called "peripheral neuropathy" and from the University of Chicago are these suggestions for investigation: 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
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

If these tests have not been done, maybe these should be considered.

You mentioned "back pain after eating. left side. mid back." This is approximately the location of the pancreas – have you been checked for pancreatitis? I urge you to request "a fasting blood insulin test" – this is NOT the same test as a glucose/blood sugar test which is used to diagnose diabetes. Ideally, the insulin level will be 3 UU/ML or lower. Excess insulin could be responsible for many of your symptoms (such as incontinence) excess insulin thickens and stiffens smooth muscles and leads to insulin resistance.

You are not the only one with unexplained symptoms, Lorie. You are not alone. You have found a group of understanding friends here at ThisIsMS. Keep searching; keep asking questions.

[Lorielynnjackson]

Oh my goodness, thank you for the detailed feedback. Had not realized deficiencies are like that.. Jimmy, are they caused by me not eating well? Because I have not been able to eat properly for the last year and half and definitley not enough. As far as nutrients... most likely am under the marks. I always have a below reading for magnesium for the last year and a half with every test. Is this an indicator? Am always also mildly dehydrated, and a lot of other levels that are always at the low end of normal... perhaps these are indicators that the Dr is missing? Is this something that a neurologist would pick up that an internal or gastro dr might miss? The twitching and hiccups wouldn't be so bad except they happen all the time... and the twitching, started with my nose and then lower eye lid... these all get worse with stress, and when i am sick. I have noticed that when i feel ill, my back hurts, im nauseous, its always more than one symptom at once... the it calms down for a day or so and starts back up again... then am sick for a few days at a time... what causes deficiencies? is it diet only? Jimmy, your bet on magnesium for hiccups and twitches might well correllate... i find that vitamins irritate my stomach so i haven't taken any.... Bartman, I will look into something like Lyme disease, but I have never had a rash like the website, but maybe i Just dont' remember... but you are right, it hasn't even been mentioned... Lyndacarol, thank you for the mention of pancreas... i had 2 sphincterotomies, so my body is dumping pancreatic juice and bile into my duodenum and it never occured to the drs that maybe there was an issue? I will definitely ask for that test and see what they say.. are these tests for the neurologist or is it better to start with my internal dr? I do not believe i have been tested for gluten intolerance, but have been eating minimal amounts lately as they are harder to digest anyway, and the symptoms stayed the same if not gotten a bit worse... hiccups, nausea, occasional dizziniess, diarhea, tachycardia, palpatations, ..etc. Maybe cysts or chonic pancreatitis or something like that is my gremlin... i however fear that with so many problems in such a short period of time, that there was something laying dormant, which was awakened by surgery... starting the whole snowball... which is why i have come to this forum. My boyfriend said one time i looked away from him and my left eye moved slower than my right... my birth mother had epilepsy, but i have had no signs of that... so not sure about family history... back pain feels like pancreas, it is the same part that hurt after the sphincterotomies, but it is only intermittent, but when it happens, sometimes my armpit burns too... boy am i a mess of symptoms. the drs are having a hard time sorting out what goes where...
Thank you for your support. I have been in and out of drs for the last year and half and now the drs are baffled. I would like to research it myself (with the help of you or information on the internet, to spot something maybe they have missed. sometimes it is the objective opinion looking at the picture that spots the problem... over the next month or two i have to see the drs for my followups and to see the neurologist, but perhaps with help, i can make informed decisions and requests from my drs...
thank you again for all your input and support, it really means alot. Lorie

[jimmylegs]

hi again! to answer your questions:

Jimmy, are they caused by me not eating well? Because I have not been able to eat properly for the last year and half and definitley not enough.

absolutely, poor eating habits could definitely lead to bad nutrient status and to various associated symptoms.

As far as nutrients... most likely am under the marks. I always have a below reading for magnesium for the last year and a half with every test. Is this an indicator?

definitely. if you're on the low end of the magnesium range, that is a HUGE red flag. I'm not even happy with the middle of the typical lab range for magnesium.
do you have your own copy of your lab results? would be interesting to have a look at your results and the range being used at your lab.

Am always also mildly dehydrated, and a lot of other levels that are always at the low end of normal... perhaps these are indicators that the Dr is missing?

almost certainly. average joe doc is NOT a nutritionist.

Is this something that a neurologist would pick up that an internal or gastro dr might miss?

I doubt it! they're not nutrition specialists either.

anyway. good to hear you might have access to serum magnesium results. any chance you've had serum zinc tested? any other nutrients?

if your system can't handle oral supplements at the moment, you might want to consider picking up some magnesium salts for the bath:
http://www.ancient-minerals.com/product ... ath-salts/

I'm feeling angry for your sake at everything you've been through, even if only half the problem turns out to be basic starvation >:|

[Lorielynnjackson]

HI Jimmy,
Thanks for the fast response....
Will check with the drs to see if they recommend a nutrition specialist.. have so many restrictions with food, ... for example tried to snack on a few pretzels tonight, because i'm hungry and couldnt' eat properly and b/f was annoyed that i was eating as he would say "crud". bread makes my tummy feel better, and i can't eat fruits, veg, beans, etc. and eating big meals like pasta, potatoes at this time of night most definitely will make reflux worse... so am kind of stuffed no matter which way i turn. Can't eat properly and when i do, its nothing i'm supposed to eat... so i don't eat at all. but before all of this my body was reacting badly, so i'm not sure what's going on. I will look for my blood tests so i can show you what the drs see... and maybe you will see something they don't? thanks again for your thorough explanations, and advice... will check in with you again tomorrow...
Night night. Lorie

[jimmylegs]

hey for sure we can have a look at whatever results you have handy.

so nasty that you can't get food down

so I'm wondering now, what exactly can you eat on a good day, other than bread or similar?

[Lorielynnjackson]

Hi Jimmy,
On a normal day, I wake up slow, aching joints. As I start moving around my heart and blood pressure skyrocket, then i'm nauseous, hiccups start, .. dry heaves sometimes. Then I have a bit of hot chocolate, or tea, can't eat anything. try a smoothie sometimes... or a yogurt. Heart is up even faster. Take a anti nausea and antiinflammatory. Wait a bit, try a rice cake with a bit bit of peanut butter or cream cheese (maybe a bite or two) then i'm full, in pain,or feel regurgitation(i think this is the nissen fundoplicatoin failure) and eat a bite all day, hiccuping all day.. hiccups have been getting stronger, and the nausea feeling along with it. try for a few bites at lunch, rice or chicken or something... only a few bites, try to keep it up all day. And for dinner same deal, chicken or pasta, or potatoes but never more than a few bites... raw fruit, veg, grains, all leave me with belly aches, skyrocketing heart rate... pressure sometimes 160/100, heart 130 sometimes... which makes me feel more nausous. sometimes after dinner or lunch the pain starts behind my back, or in my left side... and diarhea once a day in the morning... if i don't have it in the morning it happens at some random point in the day... try to snacka on a few pretzels later in the day, pop an antiinflammatory and painkiller before bed, hard time to sleep otherwise and the next day starts again. some days are worse than others...

[lyndacarol]

Oh my goodness, thank you for the detailed feedback. Had not realized deficiencies are like that.. Jimmy, are they caused by me not eating well? Because I have not been able to eat properly for the last year and half and definitley not enough. As far as nutrients... most likely am under the marks. I always have a below reading for magnesium for the last year and a half with every test. Is this an indicator? Am always also mildly dehydrated, and a lot of other levels that are always at the low end of normal... perhaps these are indicators that the Dr is missing? Is this something that a neurologist would pick up that an internal or gastro dr might miss? The twitching and hiccups wouldn't be so bad except they happen all the time... and the twitching, started with my nose and then lower eye lid... these all get worse with stress, and when i am sick. I have noticed that when i feel ill, my back hurts, im nauseous, its always more than one symptom at once... the it calms down for a day or so and starts back up again... then am sick for a few days at a time... what causes deficiencies? is it diet only? Jimmy, your bet on magnesium for hiccups and twitches might well correllate... i find that vitamins irritate my stomach so i haven't taken any.... Bartman, I will look into something like Lyme disease, but I have never had a rash like the website, but maybe i Just dont' remember... but you are right, it hasn't even been mentioned... Lyndacarol, thank you for the mention of pancreas... i had 2 sphincterotomies, so my body is dumping pancreatic juice and bile into my duodenum and it never occured to the drs that maybe there was an issue? I will definitely ask for that test and see what they say.. are these tests for the neurologist or is it better to start with my internal dr? I do not believe i have been tested for gluten intolerance, but have been eating minimal amounts lately as they are harder to digest anyway, and the symptoms stayed the same if not gotten a bit worse... hiccups, nausea, occasional dizziniess, diarhea, tachycardia, palpatations, ..etc. Maybe cysts or chonic pancreatitis or something like that is my gremlin... i however fear that with so many problems in such a short period of time, that there was something laying dormant, which was awakened by surgery... starting the whole snowball... which is why i have come to this forum. My boyfriend said one time i looked away from him and my left eye moved slower than my right... my birth mother had epilepsy, but i have had no signs of that... so not sure about family history... back pain feels like pancreas, it is the same part that hurt after the sphincterotomies, but it is only intermittent, but when it happens, sometimes my armpit burns too... boy am i a mess of symptoms. the drs are having a hard time sorting out what goes where...
Thank you for your support. I have been in and out of drs for the last year and half and now the drs are baffled. I would like to research it myself (with the help of you or information on the internet, to spot something maybe they have missed. sometimes it is the objective opinion looking at the picture that spots the problem... over the next month or two i have to see the drs for my followups and to see the neurologist, but perhaps with help, i can make informed decisions and requests from my drs...
thank you again for all your input and support, it really means alot. Lorie

Most nutrients are absorbed in the duodenum. If you have a gluten sensitivity (and possible damage to your intestines), you may not be able to absorb the nutrients. I have no medical background, but a program designed to heal the gut might make sense to try: taking probiotics, aloe vera, omega-3 fatty acids found in fish oil, avoiding any form of sugar, avoiding gluten (which is found in wheat, rye, and barley – sorry, the pretzels will have to go). By the way, hiccups are muscle spasms of the diaphragm – increased magnesium is known to improve muscle spasms/cramping. (If magnesium capsules irritate your stomach, magnesium can also be absorbed through the skin – by soaking in an Epsom salts bath or using a magnesium cream.) Iron deficiency/anemia is one of the first symptoms of a gluten problem and can cause dizziness.

In December Dr. Amy Myers, M.D. explained gluten sensitivity on The Dr. Oz Show: 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 the 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.

As for your question about your choice of doctor, I think it makes sense to start with your internist – I hope that he is compassionate and enjoys being a "disease detective." An internist will see the whole picture of how the systems interact. He can order all the tests necessary to begin the investigation. I believe that if you see a surgeon about a problem, he will find a solution only in surgery; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

[jimmylegs]

oh man sounds terrible.

it occurred to me that I had posted on magnesium and hiccups recently, thought I would link up to it here:
regimens-f22/topic2489-750.html#p220635

... found this genius piece of work .. would be hilarious if it wasn't so pathetic.
Gabapentin for intractable hiccups in a patient undergoing peritoneal dialysis
http://pdiconnect.com/content/28/6/667.full.pdf
"Hiccups are involuntary, rhythmic, spasmodic contractions of the diaphragm. ... hiccups became frequent and severe enough to produce insomnia, anorexia, and weight loss. His other medical problems included hypertension, ischemic heart disease, gout and anemia secondary to ESRF. ... Laboratory investigations were as follows: .... magnesium 0.66 mmol/L ... gabapentin was further increased to 600 mg nightly, leading to the hiccups disappearing over a 3 month follow up period"
I hate this report, on so many levels! negligence negligence negligence!

SO NOT A FAN of treating deficiencies with drugs. irresponsible to the nines.

so, on to dietary stuff. sounds like you're ingesting a fair bit of calcium, which has the potential to make any magnesium issues worse.
also as an essential micronutrient, zinc will be a fundamental bottom line structural piece of GI repair - and it (among other things) is depleted by gluten, dairy and sugar. they tend to fortify flour with iron because the effect is known - not so with zinc.

I don't know what to say about dairy and sugar, it's not like you can realistically cut yogurt and cream cheese if those are some of the only things you can get down :S
however, if you can, choose rice over wheat for a while. eg brown rice pasta if you can find some. brown rice is much more nutrient dense than polished white rice.
would you try mixing sweet potatoes into your diet rather than just regular potatoes, just for the increased nutrient density there?
and could you track down some different nut butters? pumpkin seed butter in particular? that should provide more zinc and magnesium than peanut butter.
also, for zinc and iron, would you consider trying a few bites of shellfish for zinc and iron? oysters? clams? failing those, could you get down some veal liver?? and if not that, could you do some organic beef broth?
and, do you think you could handle a few gummie supplements a day? these ones are for kids (I get these for my nephews) but as such might not be a big shock to your system: http://www.nordicnaturals.com/en/Produc ... rodID=1411
that's all I can think of just now. hope you find something you can use in there

any luck finding your lab results yet?

[Lorielynnjackson]

Hi Jimmy, Thank you for the advice on food choices... and Lyndacarol as well.. I have gradually been switching off most wheat products over to rice to see what will happen. I just find them a little easier to digest, less belly aches, but still all the other problems. I will pick up sweet potatoes, and see if i can find another nut butter... (on the pretzel note, these are the gluten free pretzels, quite tasty)... they seem to settle my stomach fairly well. Yes, you are right, it is frustrating choosing something that is good for me when all of it hurts, or makes me feel rough, or refluxy... or... I have had so many blood tests i will try to find the most recent one to show you what I am talking about... I will try to get it on here this evening... in regards to MS symptoms, what were your initial symptoms when did you know it was time to have it checked? my body has been one big terrible snowball for a year and a half... and i might end up going in to repair this last reflux surgery.. but they don't want to fix it if it will only fail because there is an autoimmune or nerve disorder behind the scenes... all of the internet stuff has your basic symptoms, but real people don't always match that... what would the drs look for? (i realize you aren't a dr but any opinions help at this point...) thank you for taking the time to discuss this with me. All of you.