should i even consider looking into possible ms?

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should i even consider looking into possible ms?

Postby findingseeking » Sun Dec 29, 2013 7:37 am

I feel kinda nuts suspecting ms.
But I’ll give a slight run down of what I have been dealing with.
I have chronic back pain. No injury or trauma. I don’t think this is necessarily related to possible ms, but it’s a large part of my life and what I deal with.
Abdo and lower spine mri mostly normal. Spot on liver that is benign. Some lower back stuff but nothing that corresponds to my pain.
Ct enterograpthy came back normal except for liver but MRI cleared those concerns.
I get head pain. A lot. Not a headache, I headache is a full all over head throb. But I get head pains. Small. Mostly in the back of my head or sometimes behind my eye. They last for days on end but don’t respond to headache meds. I never mentioned this to any doctor because I assume its normal. ( maybe it is/isn’t)
I have numbness often in my hand/arm. I have restless legs and numb legs some days. Some times for like a few days at a time I feel like my legs were hit by a bus. They are tight and hurt to the touch. I walk, but I walk awkwardly. And I can feel every single step. My hand recently went numb and I had what can only be explained as restless leg syndrome in my lower arm. For 6 hours in the middle of the day. This sent me to the ER because I had about a million twitches and spasms and couldn’t stop moving my arm, because it had to move and also the involuntary twitching makes me uncomfortable. I still have 50% loss of feeling in my half my hand. Its only been 4 days.

One of my eyes has been bright red for a month. No pain. But slightly blurry vision.
I have been seeing most things and a blur for a few years. If I could explain it it would be like seeing a lamp post and a half, but seeing a lot of things seems ok, some things I strain a lot. Ophthalmologist blew me off in 2011.

I am doing an apprenticeship for hairdressing. I drop things a lot. More than most people. Its hard for me to get my hand to cooperate. To make my fingers move and squeeze together, to manipulate tools. I laugh it off but its odd. I was a make up artist before and I am used to my fine motor being dead on.

Also all blood work came back normal. Nothing flagged as high or low. I supplement magnesium (300 mg a day) because it helps me sleep/ get my muscles to chill out, but im not deficient. I tried D but it made me feel crummy. I was taking about 4000iu a day. I also take a multi B but not on the regular. It gives me vitavom.

I also have lots of tremors. Not all the time but my hands and legs shake at times. My body feels fine and I feel ok but I simply shake.

As for fatigue. I have that. But I am a single student mother and haven’t known rest since before I got pregnant.

Anyways if anyone could let me know if its completely off the wall to even question this or I should ask the neuro im seeing in the new year to investigate this. ( seeing the neuro for the lumbar MRI, and hopefully will have EMG done on hand by then, as per loss of sensation in my hand)

Thanks !
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Re: should i even consider looking into possible ms?

Postby jimmylegs » Sun Dec 29, 2013 9:37 am

hey there! sorry to hear you're having trouble :S
bunch of questions: :oops:
do you mind if I ask what your serum magnesium and serum vit d3 results were?
did they test serum zinc or serum selenium or serum ferritin at all?
also, what form of magnesium do you take when you do the 300mg per day?
and, do you have a sense of what your daily dietary sources of magnesium are?
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Re: should i even consider looking into possible ms?

Postby findingseeking » Sun Dec 29, 2013 9:51 am

i dont have copies anymore of my blood work.i just remember looking at them at one point and seeing they were in normal range. i also have had regular cbcs and work ups done at least once a month for the last year.
i take mag citrate. i do not like glycinate. i take 300mg a day for the last 2 years. sometimes 400mg a day.

i dont know about what the levels in my food are but i eat a well balanced whole food diet. low in red meat, high in fish lots of vegetables and whole grains and i do not eat gluten and rarely consume much dairy, except for sometimes a bit of cheese. none of this is 100% rigid. i cave and eat a croissant every once in a while, eat cheap take out too. but by and large i eat better than most people i know and have been able to eat like this for many many years.

i'm just wondering if the symptoms i am having could prompt me to investigate ms.
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Re: should i even consider looking into possible ms?

Postby CaliReader » Sun Dec 29, 2013 10:00 am

Hi,

No, I don't think you're off the wall. Yes, you should ask the neurologist.
You might read the NMSS website regarding ms symptoms.

Good luck. And Jimmylegs is right. Optimizing nutrition, and a few other things like quitting smoking if you smoke can improve the odds for an easier time with the disease if you have it.
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Re: should i even consider looking into possible ms?

Postby jimmylegs » Sun Dec 29, 2013 10:23 am

hi again :) if you can get copies, could be useful. nutrition inquiries would be a logical part of your investigation into ms as a possible scenario - there's an array of nutrients that are known to be suboptimal in ms patients, ie low normal while healthy controls have high normal status. it can be helpful to discover whether your levels are in the low normal sick part of the range, or the high normal healthy part of the range. this is a gap in mainstream care. patients generally have to pick up the slack in this area.
CBCs don't hit quite a few of the suspect nutrients for ms.. serum magnesium, serum d3, serum selenium, serum zinc, these could all be telling.
I take a mix of citrate and glycinate myself. 300mg per day is below the RDA (which in itself may be on the low side as a recommendation). so, 300 may not quite do the trick, esp if you are active/busy/stressed.
your diet sounds pretty righteous :D could still be some nutrient gaps though.
which ten vegetables do you eat most often? how many times a week do you eat fish? what kinds of fish do you choose most often?
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Re: should i even consider looking into possible ms?

Postby CaliReader » Sun Dec 29, 2013 10:34 am

One more piece of advice. You may know this already... but spend your limited time in the first appointment wisely. If you start with the back pain, your doc may jump to a wrong conclusion and not hear you about the tremors, restless leg and dropping things.

I would wait to address the back pain until after you know whether you are a neurology patient or not. At a first appointment, they care about whether you need help from their specialty or can be sent back to primary care. Some of your symptoms seem much more specific to neurology. Later, I've found that a good neurologist can be very helpful with pain. But you don't want them to assume that pain is all you have, or they won't think you're their problem.
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Re: should i even consider looking into possible ms?

Postby jimmylegs » Sun Dec 29, 2013 11:02 am

seconding calireader on that to a degree - take the symptom list with, so the doc has something comprehensive that can be quickly scanned without you having to remember all the details while in conversation and being asked clarification questions and such.. I wouldn't leave out pain as a symptom, but do make sure your various symptoms are represented.

perhaps you could organize the issues something like this:

pain (back of head, behind eye, back muscles)
numbness (hand, arm, legs)
vision (blurred/partial vision, bloodshot eyes)
muscles (legs and arms - restless, twitching, tics, spasms, shaking, tight, painful)
coordination (awkward gait, poor grip)

(chronic headaches are not normal by the way :( no fun)
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Re: should i even consider looking into possible ms?

Postby findingseeking » Sun Dec 29, 2013 11:29 am

I had full blood work ups done a bit ago. i will try to get my hands on the readings and take a further look into them.

the reason i am seeing the neuro is to read my mri of my back. i never mentioned any of the other problems to my other doctors because my back pain is the most uncomfortable issue and i didnt want to seem like one of those people who complains about everything only to have no one take anything i say seriously. perhaps this has not worked in the way i had hoped.
it wasnt until last week when my arm completely went that i started compiling and looking at the other stuff as a big picture and not random stuff that just happens.

i am super into nutrition.

top 10 veg i eat would be
arugula, kale, a variety of lettuces, broccoli, zucchini, tomatoes, cauliflower, peppers, celery, carrots, green beans, onions, brussels sprouts, bok choy, cabbage. all fresh.
i eat mostly salmon, haliubt, and cod. about 2-3 times a week. depends what the fish guy has.
i also limit soy because it makes my PMS way worse.

also today i woke up with my red eye hurting something awful.

while i am lucky to live in canada and have "free" health care the system here is so slow and bogged down. the last few years of my life havent been what they could have been had i had more extensive care and not had to wait 6+ months to see specialists.

thank you for your replies and advice. i am goignt o make sure i make the most of the neuro apt i have. I am hoping my EMG will by done by then so if its clear we can proceed to whatever else needs to get done and not hung up waiting on that.
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Re: should i even consider looking into possible ms?

Postby jimmylegs » Sun Dec 29, 2013 12:30 pm

sounds good re getting a copy of your results.

it's difficult for the health professionals to make good decisions with incomplete info - I know they say things like 'one issue per visit' and such, but giving the list to the doc can help them prioritize and hopefully help you get to the bottom of things.

your fish list looks pretty great and you have a good healthy list of veggies as well :D

do you eat any shellfish at all? they can provide a good shot of iron and zinc, given that your diet is on the low side in the red meat department

for the sake of magnesium status, you could consider giving spinach and swiss chard a place in the top 10.
personally I like to make multi-green spanakopita to help ensure high density intakes. I am about to eat some made with just spinach dill and parsley for the greens component, but it's good with half swiss chard too. you can boil the chard for 3 mins to remove oxalates and improve mouth feel. spinach gets a 1 min boil to reduce oxalate content.

re pms issues - sounds like another indicator of magnesium issues. soy can have a pretty high in phosphorus-magnesium ratio. phosphorus is one of those things you want properly balanced with magnesium - could be related.

I hear ya re the slow system. not always feasible to take the pricey cross border shopping option. they're lucky in the states too - can just requisition whatever blood tests they want online. so easy and not really that expensive.

one piece of info you might want to take to your appointment is a list of desirable nutrient tests. depending what province you're in they may be fully covered.
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Re: should i even consider looking into possible ms?

Postby lyndacarol » Sun Dec 29, 2013 1:58 pm

findingseeking wrote:But I’ll give a slight run down of what I have been dealing with.
I have chronic back pain. No injury or trauma. I don’t think this is necessarily related to possible ms, but it’s a large part of my life and what I deal with.
Abdo and lower spine mri mostly normal. Spot on liver that is benign. Some lower back stuff but nothing that corresponds to my pain.
Ct enterograpthy came back normal except for liver but MRI cleared those concerns.
I get head pain. A lot. Not a headache, I headache is a full all over head throb. But I get head pains. Small. Mostly in the back of my head or sometimes behind my eye. They last for days on end but don’t respond to headache meds. I never mentioned this to any doctor because I assume its normal. ( maybe it is/isn’t)
I have numbness often in my hand/arm. I have restless legs and numb legs some days. Some times for like a few days at a time I feel like my legs were hit by a bus. They are tight and hurt to the touch. I walk, but I walk awkwardly. And I can feel every single step. My hand recently went numb and I had what can only be explained as restless leg syndrome in my lower arm. For 6 hours in the middle of the day. This sent me to the ER because I had about a million twitches and spasms and couldn’t stop moving my arm, because it had to move and also the involuntary twitching makes me uncomfortable. I still have 50% loss of feeling in my half my hand. Its only been 4 days.

One of my eyes has been bright red for a month. No pain. But slightly blurry vision.
I have been seeing most things and a blur for a few years. If I could explain it it would be like seeing a lamp post and a half, but seeing a lot of things seems ok, some things I strain a lot. Ophthalmologist blew me off in 2011.

I am doing an apprenticeship for hairdressing. I drop things a lot. More than most people. Its hard for me to get my hand to cooperate. To make my fingers move and squeeze together, to manipulate tools. I laugh it off but its odd. I was a make up artist before and I am used to my fine motor being dead on.

Also all blood work came back normal. Nothing flagged as high or low. I supplement magnesium (300 mg a day) because it helps me sleep/ get my muscles to chill out, but im not deficient. I tried D but it made me feel crummy. I was taking about 4000iu a day. I also take a multi B but not on the regular. It gives me vitavom.

I also have lots of tremors. Not all the time but my hands and legs shake at times. My body feels fine and I feel ok but I simply shake.

As for fatigue. I have that. But I am a single student mother and haven’t known rest since before I got pregnant.

Anyways if anyone could let me know if its completely off the wall to even question this or I should ask the neuro im seeing in the new year to investigate this. ( seeing the neuro for the lumbar MRI, and hopefully will have EMG done on hand by then, as per loss of sensation in my hand)


Welcome to ThisIsMS, findingseeking.

First, you may not have MS at all, but there is always the possibility. The MS diagnosis is made by ruling out other conditions which share the same symptoms.

In your list of symptoms you mentioned, "numbness often in my hand/arm" and "numb legs some days." Numbness/tingling/pain or burning in the extremities (hand/arm or feet/legs) is called peripheral neuropathy. This condition may contribute to your description: "I drop things a lot. More than most people. Its hard for me to get my hand to cooperate. To make my fingers move and squeeze together, to manipulate tools. I laugh it off but its odd. I was a make up artist before and I am used to my fine motor being dead on."

When you see a neuro in the new year, I encourage you to investigate this symptom as described by the University of Chicago: http://peripheralneuropathycenter.uchic ... #bloodtest

Compare your "blood work done a bit ago" with that suggested by U Chicago (request and keep copies of the results for your own file):

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

At this time, I think the testing for wheat/gluten sensitivity/celiac disease is extremely important. Although you state, "i eat a well balanced whole food diet. low in red meat, high in fish lots of vegetables and whole grains and i do not eat gluten," whole-grain foods DO contain gluten. A person can develop a gluten sensitivity at ANY time in her life, even if she has been able to eat gluten for many, many years.

CaliReader and jimmylegs have given good tips about your upcoming neuro appointment – preparation is half the battle.

By the way, my first three MRIs AND my EMG had perfectly "normal" results. My experience is not uncommon among people eventually diagnosed with MS. We wish you all the best. Please let us know how it goes.
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: should i even consider looking into possible ms?

Postby findingseeking » Sun Dec 29, 2013 3:51 pm

thanks for the replies.
i had blood work done for antibodies related to celiac and they came back normal. it was less than a year ago that this was done. i also had 2 scopes done which were normal.

By whole grains i was talking about rice, corn, quinoa, buckwheat etc. all gluten free.
i was 100% gluten free for over a year, no cheats no slips and i didnt feel much better. when i went back to eating it for a while i didnt feel all that much worse either.
i choose to leave it out of my diet now because it keeps me eating cleaner and putting more thought into my choices.

im going to put all my major concerns down on paper, try to get all the copies of pertinent blood work and bring them with me to my apt.
i would more than anything like to know what it is i am dealing with and have options of how to proceed. pre diagnosis land sucks.
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Re: should i even consider looking into possible ms?

Postby lyndacarol » Sun Dec 29, 2013 4:21 pm

I still think it was a good idea to test for celiac disease; unfortunately, the testing and even intestinal biopsies are not always 100% accurate. Following the gluten-free diet can give a more accurate picture. I commend you for following a gluten-free diet – it is not easy; I have been doing it for almost 2 months.

In addition to gluten sensitivity, excess insulin (hyperinsulinemia) is a favorite topic of mine. I always urge everyone to request a "fasting blood insulin test" –this is NOT the same as a glucose/blood sugar test. For the insulin test, the optimal result is 3 UU/ML or lower. My initial insulin test was 12; over the years no test result was lower than 9; BUT after following a gluten-free diet for about six weeks, my latest insulin test result was… drumroll please… 3.4 UU/ML!!!My symptoms have not changed, but I remain hopeful that they will.

To findingseeking – all the best to you!
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: should i even consider looking into possible ms?

Postby findingseeking » Mon Jan 06, 2014 7:14 pm

i got the apt for my EMG this weds.

the feeling in my arm/hand got better for a few days and then got worse again.

i feel silly because its just loss of sensation and coordination (this isnt life threatening) but its so difficult considering my job requires fine motor skills.
also its like when my sensory stuff is worse and im trying super hard to force it anyways i get.. not dizzy but my head feels all weird, maybe its the stress or what not but i just feel all loopy when im trying to force myself to feel things i can't.
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Re: should i even consider looking into possible ms?

Postby lyndacarol » Mon Jan 06, 2014 7:29 pm

findingseeking wrote:thanks for the replies.
i had blood work done for antibodies related to celiac and they came back normal. it was less than a year ago that this was done. i also had 2 scopes done which were normal.

By whole grains i was talking about rice, corn, quinoa, buckwheat etc. all gluten free.
i was 100% gluten free for over a year, no cheats no slips and i didnt feel much better. when i went back to eating it for a while i didnt feel all that much worse either.
i choose to leave it out of my diet now because it keeps me eating cleaner and putting more thought into my choices.


Is it possible you have been "glutened?" Compare your symptoms to the author's:

http://celiacdisease.about.com/od/Glute ... l-Like.htm
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Re: should i even consider looking into possible ms?

Postby findingseeking » Mon Jan 06, 2014 7:57 pm

i really dont think i have gluten intolerance. i have trialed this over and over again. i have been militant about it and went back to gluten and found no negative changes over 3 month periods.
i have been tested for the antibodies and have no inflammation to be seen. ( tested while eating gluten so it would show up)

im a bit nervous for the emg, just because i have dislike tests. i have had 2 mri's done this year and several CT's done with contrast. im so sick of being probed and prodded. im sick of being sick. im sick of it being an invisible illness and getting little to no help from MD's and people in my life thinking im just too sensitive. i want to be well, or to at least know whats wrong and go from there.
this likely is not ms, so i'm sorry to post here. but some of my symptoms are similar and i just feel at the end of my rope, ya know?
im 32, its been 3 full years of pain. and i have a little kid who relies on me.
whatever it is going on inside me, im just too tired.
sometimes i just wanna stay in bed and say eff life, im taking a week off, but life doesnt work that way.
sorry to whine.
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