Trying to rule out MS

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

Trying to rule out MS

Postby missriss91 » Wed Nov 29, 2017 11:24 am

Hi I'm 26 years old and started having on/off neuro symptoms.
I've had muscle spacticity/ridgity (sp?) For 5 or 6 years.
Over the years I've become generally more fatigued and weak. My brain doesn't work like it used to. I was so smart before. I'm generally clumsy and have balance and memory problems.
Then something different happened this summer. I started having weird neuro symptoms come and go. No numbness but Can't even see like at all. When I looked at someone's head I saw 2 heads really far apart. blurry/double vision and vertigo if I looked down. I tripped over my own feet way more often than usual. I barely got my nose on the neuro test at urgent Care and er. I mean I touched my nose just not the tip I kept getting the side and top lol. I would be speaking and stop mid sentence because I forgot what I was talking about.
This lasted about a day each time. I would go lay down to try to make it go away and when I woke up it was still there. Then it slowly went away only lasted about a day each time it got that bad. I had it happen like 4 times since June.
It seems neurological.
But from what I've read Ms relapses last at least 24 hr to several days or weeks or forever even. And it only happens a few times a year.
I'm seeing a pcp next month supposed to see a neurologist. Just wondering what people who actually know about MS more than me think. Not trying to self diagnose more like rule out. I did look up other problems like Ms and none of those fit my symptoms at all. I haven't really found anything yet that matches my symptoms lol so what do you think? Is there anything anyone knows of besides Ms that can cause my symptoms?
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Re: Trying to rule out MS

Postby missriss91 » Wed Nov 29, 2017 11:50 am

I forgot facial numbness actually that happened last time for the first time. I couldn't drink water it kept running down my face and I was kinda slurring.
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Re: Trying to rule out MS

Postby Snoopy » Wed Nov 29, 2017 1:48 pm

There are numerous things that could cause your symptoms such as vitamin/mineral deficiencies, medications, mental health disorders and many other conditions.

There is a diagnostic criteria for Multiple Sclerosis (The Revised McDonald Criteria), part of that criteria requires all other possible causes for a person's symptoms be ruled in/out. Symptoms alone will not give a person a diagnosis of this disease and there is no single test, by it's self, that can definitely diagnose MS.
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Re: Trying to rule out MS

Postby missriss91 » Wed Nov 29, 2017 2:04 pm

Yeah I'm hoping it's not. Can you help me figure out what vitamins and minerals to check for?
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Re: Trying to rule out MS

Postby jimmylegs » Wed Nov 29, 2017 2:56 pm

hi one thing that could be a good idea would be to ask for a referral to a pro dietitian.

focus at least half your energy (and that of your assembled team of health professionals) on optimizing health. the balance can be about solving the diagnostic puzzle.

the ms mainstream has known that b12 deficiency mimics ms and must be ruled out for decades. it will be one of the 80 tests that must be done to rule out something else.

one of the problems with b12 testing is the reference aka normal range used to establish whether or not a patient's status is ok. sure it's NORMAL, but in a society prone to chronic disease, is normal really good enough?? what if i'm looking for OPTIMAL?

this results interpretation issue applies pretty much across the board to all the nutritional 'usual suspects' in ms cases (well, and in most chronic disease to one extent or another).

vitamin d3 is a more recent development. recent enough that if you test low, your doc may well prescribe a problematic dose without mentioning or even necessarily knowing about the important d3 cofactors that should be considered when writing any such prescription.

there are a few more to look at but in all cases, getting your own copy of the results is key. otherwise 'everything was normal' is all you're likely to hear.

until nutritional lab reference ranges are redone with an emphasis on optimal status, a dietitian will more readily identify issues with nutrient intake. ideally you can find one who knows the nutritional ins and outs of ms to a more fine tuned degree than your mainstream dietitian or even an ms nutrition web page might convey. the only dietitian i saw personally since dx couldn't actually answer my questions, because she had not had routine exposure to ms patients and their needs. she did give me a page of research on vitamin d3 studies which helped me figure out my eventual regimen (poorly though - once upon a time i did not know about d3 cofactors either). last time i was on a formal ms society info page, i actually couldn't believe how incomplete and vague the ms nutrition info was.

other nutrient levels of interest for ms patients can include magnesium, zinc, ferritin, copper, vitamin e, selenium and fatty acids. more info:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17004.html

excerpt from a recent tale of possible interest:

Dear All,
Do you know any tip to decrease leg stiffness?
I mean, except taking Magnesium and doing exercise.
Thks

...two days go by...
It's incredible
Right after this message, I went to my pharmacy.
Funny story, the pharmacist told me exactly the same thing: "Mag Oxide is good for laxative purposes. If you aim for good absorbtion, you'd better switch to Mg Glycinate".
So I bought bisglycinate from Solgar, and only after 2 days: results are great.
Not only stiffness vanished, but globally, I feel much better.
I hope these results will last more than 2 days.


the whole story here general-discussion-f1/topic29623.html

one thing you can do to prep for an appointment with a dietitian is to start tracking serving sizes of the specific individual foods and fluids you consume each day. this diet diary should read more like recipe ingredients than vague info like 'salad' 'sandwich' etc. also a good idea to mention any supplements and/or meds taken, any dietary restrictions, and general activity level.

if it's any consolation while you are investigating, i've dealt with most of the issues on your symptom list personally, and they're all in the past now.

when you work on optimizing health nutrition is not guaranteed to be THE answer, but if there is any fraction of your symptom list that could be resolved with some attention to lifestyle and diet, why not work on that, get anything that could be a side effect of suboptimal nutritional status out of the picture!!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Trying to rule out MS

Postby missriss91 » Wed Nov 29, 2017 3:33 pm

Yeah that seems to be all I hear. Normal. Tests x-ray CT blood etc. But obviously something isn't right. If I could fix it that way I will definitely try. I honestly have a crappy diet and fluid intake. So that I'm sure has a lot to do with it then. I also have fibro, pcos, confirmed painful lipomas covering my inner arms and legs which is a complete different thing I have to rule out, the huge rock hard overgrown muscles I have to get fixed that one sucks, they said patellafemoral pain syndrome in my left knee but it happened after an injury so ...
Oh not to mention high doses of psych meds for bipolar 1, PTSD, panic disorder, anxiety disorder and borderline personality disorder.
Now u see why I need a new Dr lol it's so ridiculous.
I told my husband if I was a dog they would have put me out of my misery a while ago. Ha
Gotta find a way to laugh too lol
But for real thank u for your advice.
Should I start taking the mag and vit d? Or wait until I get my levels tested? Or maybe just a multi vitamin?


I will do ANYTHING to make this all go away.
How do u find a dietician? Does insurance cover?
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Re: Trying to rule out MS

Postby jimmylegs » Wed Nov 29, 2017 4:54 pm

ok i bet there's tons you can work on. you can start food/fluids/meds/supplements/activity diary right away.

i have some fibro tidbits kicking around on here somewhere, can dig those up. pcos i've look at in the past, can revisit. need to look up lipomas.

patellafemoral syndrome that does suck. had it. didn't like it. talk to me about the huge rock hard overgrown muscles. what's going on there?

re psych meds, i've helped ppl with bipolar dx before. and i've had ppl reflect after being told 'stress' was the problem but then fixing nutrient status: 'all my life i thought that was just my personality'. i was the same. 'wow wut - i didn't need to feel that way my whole life?'.

re dietitian it would be good to ask your regular doc for a referral. research suggests docs are not super likely to refer patients to dietitians of their own initiative, but if you *ask*, maybe.

coverage depends on your policy. where i am, the govt system here is backwards (like many other places mind you!) you can get coverage for reactive disease management but not preventive health promotion stuff. it won't last for long. as all the baby boomers start ramping up prescription costs, the govt will start saying HANG ON NOW maybe we should get out in front of this BEFORE the diagnosis and the expensive prescriptions roll in..

as a student, for me that extra insurance does give limited access to specialist services. mind you they also just have a dietitian on staff in health services on campus (but she's the one who didn't know what to do with me - why you need a referral to one with msxp)

i would say for starters

1. begin the intakes diary

2. figure out your daily magnesium requirement based on 7-10 mg per kg body weight. if more active, choose the 10 mg/kg option.

3. maximize magnesium intake from healthy food sources. example: 1.5 cup serving boiled dark leafy greens, 3x per week. a truckload of other beneficial stuff will just come along for the ride along with the magnesium. greens must be boiled to achieve the right nutrient density per serving. spinach is the shortest boil, 1 min. chard, 3 min. kale you can steam, 5 min. if you don't like these, hide them. you can get a lot of pureed green stuff into soups, sauces, meatballs/patties, mashed veg, etc etc. even in mashed potatoes. yes you can *see* them, but you don't really notice them in mouth feel. this is how my brother gets a lot of things into his finicky kids.

4. acquire and take HIGH QUALITY multivit/multimin and essential fatty acids. yes, it will mess up your baseline bloodwork but if you get in the lab soon, you won't have had time to rebuild tissue stores that much anyway, and you can just do a washout for a week or two right before your blood draw to get rid of any recently taken/circulating stuff.

5. get HIGH QUALITY magnesium supplement. no magnesium oxide. use to top up remainder of your daily requirement after diet and whatever is in the multimineral. if you end up taking more than one per day, split them up am/pm. if you get too much, might feel a bit sluggish in the muscles. happened to me when my diet was super high mag density, plus i had been taking magnesium for years, and then decided to go from 200mg to 400mg per day supplemental mag

also can consider things like natural calm, a powder beverage mix made with mag citrate. and transdermal mag via epsom salts baths or soaks using either mag sulfate crystals (more typical) or mag chloride flakes (better option). if the ocean is handy, that can help too ;)

i think that will do the most for you in the short term, while you get organized with a dietitian and hopefully some lab work too!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Trying to rule out MS

Postby NHE » Thu Nov 30, 2017 1:37 am

missriss91 wrote:I haven't really found anything yet that matches my symptoms lol so what do you think? Is there anything anyone knows of besides Ms that can cause my symptoms?

I think that it would be a good idea to rule out a vitamin B12 deficiency as soon as possible. If your symptoms are due to low B12, then starting a B12 replacement regimen early on may reduce or resolve some of your symptoms. However, if you're low on B12 and you delay starting a B12 replacement regimen, then older symptoms may become permanent though you likely won't get worse.

A standard set of tests to evaluate B12 deficiency include serum B12, homocysteine, red blood cell (RBC) folate and methylmalonic acid (MMA). Since you're experiencing neurological symptoms you'll want their B12 to be 500-1000 pg/mL. Homocysteine (a cardiotoxic amino acid) and MMA are two biomarkers that indicate how well your body is using the B12 you do have. RBC folate is tested because it can also cause elevated homocysteine. Elevated MMA is thought to be more specific to B12 deficiency though it is possible to have a false negative test result, i.e., low MMA even in the presence of low B12.

You may wish to read the following topic for more information on B12.

http://www.thisisms.com/forum/natural-approach-f27/topic24857.html
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Re: Trying to rule out MS

Postby Snoopy » Thu Nov 30, 2017 6:59 am

missriss91 wrote:Oh not to mention high doses of psych meds for bipolar 1, PTSD, panic disorder, anxiety disorder and borderline personality disorder.


Are your medications prescribed and monitored by a Psychiatrist? If not I suggest you get into a Psychiatrist as these types of medications are their specialty. Working with a Psychotherapist would also be advisible.

A consideration for symptoms can be medication side effects and/or psychosomatic. Mental health disorders can cause body wide physical symptoms and appear to be Neurological, but is not due to a disease process.

You can search for the medications you take and their side effects:
https://medlineplus.gov/druginformation.html
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Re: Trying to rule out MS

Postby missriss91 » Thu Nov 30, 2017 9:40 am

With the lipomas, the Dr said I could have dercums disease super rare. You get them in dercums where I get them and they're painful like dercums. The pain is said to be caused by the lipomas pressing on the nerves. It's intense burning sensation. Other stuff to do with it is weight hormones and cholesterol.

The muscles in my back started getting bad after my first son. I was 20. That's when fibro started too. The only way I can describe it is a major pulling tightness pressure pain with a deep ache. The muscle has at least doubled in size since it started. I can't turn my torso.
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Re: Trying to rule out MS

Postby Snoopy » Thu Nov 30, 2017 11:50 am

missriss91 wrote:The muscles in my back started getting bad after my first son. I was 20. That's when fibro started too. The only way I can describe it is a major pulling tightness pressure pain with a deep ache. The muscle has at least doubled in size since it started. I can't turn my torso.


You have a diagnosis of Fibromyalgia which would account for most of your symptoms.
Infomation about Fibro: https://www.womenshealth.gov/a-z-topics/fibromyalgia

Lipomas are benign tumors and can be hereditary. They can be painful when pressing on nerves but can be removed if wanted or needed.
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Re: Trying to rule out MS

Postby jimmylegs » Thu Nov 30, 2017 3:50 pm

a few things for fibro

Management of Fibromyalgia: Rationale for the Use of Magnesium and Malic Acid (1992)
http://www.tandfonline.com/doi/abs/10.3 ... 9208997961
Subjective improvement of myalgia occurred within 48 h of supplementation.

Is magnesium citrate treatment effective on pain, clinical parameters and functional status in patients with fibromyalgia? (2013)
https://link.springer.com/article/10.10 ... 011-2334-8
The serum and erythrocyte magnesium levels were significantly lower in patients with fibromyalgia than in the controls. Also there was a negative correlation between the magnesium levels and fibromyalgia symptoms. The number of tender points, tender point index, FIQ and Beck depression scores decreased significantly with the magnesium citrate treatment. The combined amitriptyline + magnesium citrate treatment proved effective on all parameters except numbness. Low magnesium levels in the erythrocyte might be an etiologic factor on fibromyalgia symptoms. The magnesium citrate treatment was only effective tender points and the intensity of fibromyalgia.

wonder whether a higher quality form of magnesium might have achieved better results???

Effects of transdermal magnesium chloride on quality of life for patients with fibromyalgia: a feasibility study (2015)
http://www.sciencedirect.com/science/ar ... 6415601959
This pilot study suggests that transdermal magnesium chloride applied on upper and lower limbs may be beneficial to patients with fibromyalgia.

Magnesium: A Mineral Essential for Health Yet Generally Underestimated or Even Ignored (2016)
https://pdfs.semanticscholar.org/6831/2 ... 329189.pdf

Chronic magnesium deficiency and human disease; time for reappraisal? (2017)
https://www.ncbi.nlm.nih.gov/pubmed/29036357
(A) Conditions associated with and/or exacerbated by chronic magnesium deficiency and (B) those most at risk
A...
Muscular—muscle weakness, fatigue, numbness, tingling, spasms/cramps/tetany, fibromyalgia
Neurological—irritability, depression, migraines, stroke... (they forgot ms - 5 related studies here: betaseron-f8/topic29601.html#p250883)
B...
Diet; food low in magnesium
Drinks; soft drinking water in locality, bottled and hard water low in magnesium (they forgot soft drinks high in phosphates)
Salt; refined salt for cooking and in food
Exercise; regular and strenuous
Alcohol/alcoholics; regular high alcohol intake esp. spirits
Drugs such as diuretics (loop and thiazide), proton pump inhibitors, tacrolimus, chemotherapeutic agents ... and some phosphate-based drugs...

still hunting for the papers i'd posted which between them drew attention to the association of low mag status in fibro patients, with their relatively low cutaneous vit d3 synthesis under uv exposure, compared to controls. cofactors.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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