Undiagnosed

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Ilovecoffee
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Undiagnosed

Post by Ilovecoffee » Sat Sep 07, 2019 8:53 am

Hi I’m a 30y/o female. I’m undiagnosed but certain I’ve been living with ms for at least 10 years. I had my first attack before my 20th birthday. Numb patches all over body, couldn’t think clearly, had a hard time finding words, vertigo, slightly weakened bladder and bowel muscles. Doctors wouldn’t believe me because I had no visible symptoms and told me it was just anxiety. This went on for a month or two. Then I got pregnant with my first child. I had an MRI 3 months after he was born but I was not having symptoms at that time. Never got a call about so I assumed it came back clean and moved on with my life.
About 2 & 1/2 years later I experienced symptoms again. Numbness in my legs. By that time I had an almost 3 year old and an 18 month old. I was still able to work and didnt seek medical attention.
I didn’t experience symptoms again until 3.5 years later which was a couple months after my third child was born. My symptoms were feeling uncoordinated (this was only noticeable by me), my voice and throat felt weird, cog fog again. Once again I avoided medical attention because all I wanted to do was focus on my newborn and kids and the symptoms eventually went away.
Fast forward to three years later and they are here again. Symptoms started with twitching in my torso and legs, then a few weeks later the twitching spread along with a tingling foot and feeling uncoordinated again. Then 3 or 4 weeks after that I constantly have the urge to urinate. All of this was within 6 weeks. All of these symptoms were so spread out.. are they still considered one attack or could my ms be turning progressive? I never knew rrms could turn progressive until recently so this has me freaking out. I plan on seeing a doctor as soon as I can.

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jimmylegs
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Re: Undiagnosed

Post by jimmylegs » Sat Sep 07, 2019 9:08 am

hi and welcome ILC :)

as a mom of three, you may find this series of older posts related to member CristinF's experiences interesting. i'll drop you in at the happy ending but you can flip back through two pages of background posts for the details if you wish:

viewtopic.php?p=193710#p193710
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Ilovecoffee
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Re: Undiagnosed

Post by Ilovecoffee » Sun Sep 08, 2019 5:58 am

jimmylegs wrote:
Sat Sep 07, 2019 9:08 am
hi and welcome ILC :)

as a mom of three, you may find this series of older posts related to member CristinF's experiences interesting. i'll drop you in at the happy ending but you can flip back through two pages of background posts for the details if you wish:

viewtopic.php?p=193710#p193710
Thanks jimmylegs.That is very interesting. Do you think deficiencies could have been causing my symptoms all these years?

Got any advice before I see a doctor?

One more question, if this ms, is it possible that it could have been progressing the whole time even while I wasn’t experiencing any symptoms? I don’t really understand how it works. This has me worried.

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NHE
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Re: Undiagnosed

Post by NHE » Sun Sep 08, 2019 7:46 am

Ilovecoffee wrote:
Sun Sep 08, 2019 5:58 am
One more question, if this ms, is it possible that it could have been progressing the whole time even while I wasn’t experiencing any symptoms? I don’t really understand how it works. This has me worried.
Yes. That's the nature behind the name Relapse Remitting MS. For example, I was symptom free for the 8 years between my first symptoms in 1991 and my second attack in 1999 which led to my diagnosis.

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Re: Undiagnosed

Post by Ilovecoffee » Sun Sep 08, 2019 8:24 am

NHE wrote:
Sun Sep 08, 2019 7:46 am
Ilovecoffee wrote:
Sun Sep 08, 2019 5:58 am
One more question, if this ms, is it possible that it could have been progressing the whole time even while I wasn’t experiencing any symptoms? I don’t really understand how it works. This has me worried.
Yes. That's the nature behind the name Relapse Remitting MS. For example, I was symptom free for the 8 years between my first symptoms in 1991 and my second attack in 1999 which led to my diagnosis.
So damage can occur without symptoms during a remission? Sorry if I’m not making any sense.

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jimmylegs
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Re: Undiagnosed

Post by jimmylegs » Sun Sep 08, 2019 8:52 am

hi again :) i think building three humans from scratch takes a lot of ingredients and it can't hurt to thoroughly eliminate any possibility of lingering deficits as part of your personal scenario.

i hope you will seek guidance from a few different professionals going forward, including the kind that help their patients optimize healthy diet and lifestyle. when you know there are problems but they're not flagging anything specific on tests yet, that's your opportunity to act and find out whether decisive preventive action has a role to play in your own situation. if status quo brought you to this less than ideal point, what are the most obvious changes that could potentially be helpful?

there are various kinds of steps you can take. eg
keep a very status quo diet diary for 3 days (there's a template in the 'diet' section of the site). compare it to food guide recommendations. maybe even take it to a dietitian for review.
review your habits if any re supplementation and/or meds to look for gaps or conflicts.
review any past bloodwork for problem areas. consider asking for some new and less-often requisitioned tests *if* you know or are prepared to learn how to interpret results within the 'normal' range.

lots of possibilities to consider!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Ilovecoffee
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Re: Undiagnosed

Post by Ilovecoffee » Mon Sep 09, 2019 11:15 am

Update

I have now seen a doctor. I will be doing blood work tomorrow to check for any deficiencies including vitamin d. Hoping to get some answers to help me solve this. :(

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jimmylegs
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Re: Undiagnosed

Post by jimmylegs » Mon Sep 09, 2019 11:42 am

excellent first steps.

please note that standard bloodwork is not typically set up to do the best job of assessing nutrient status in general, or the most suitable tests of interest for those seeking to avoid matching an ms patient nutrient profile. it's a bit of a learning curve.

for example normal results include both sick and healthy people. outright deficiency identified on a blood test is likely to be severe. simple example, vit c deficiency is associated with scurvy and levels below around 11 umol/l. well up into the normal range you hit levels considered adequate (50 umol/l) or optimal (70 umol/l). but if for some reason someone actually ordered a blood test you'd be 'normal' right down to 11 umol/l with no red flags.

we can presume that your serum b12 levels will be tested, which is good but although you may not be deficient, you may also not be optimal. i wish i had better scientific evidence for my personal lower cutoff of 370 pmol/l b12 in serum, but i'm afraid i don't.

as far as vit d is concerned, they have done a bit of recent fine tuning within the normal range, similar to how they've set up sections within normal serum ferritin when they're checking your iron status. so applied to vit d3, it's no longer a 'with or without rickets' situation. however, now it's more like a 'with or with out osteoporosis' deal. with d3 results, you're not likely to find anyone doing much fine tuning between about 75 and 250 nmol/l. many ms patients are more interested in levels associated with good immune system function, ie more like 125-150 nmol/l

other atypical tests you may have to ask for specifically include serum magnesium and serum or plasma zinc. these nutrients are often low in ms patients. again, everyone's results come back 'normal' but in the low end of the range when they should be high. the devil is always in the details, and for the most part, labs just don't do them very well at this point in time.

if any such tests are not in the picture, then it's back to the diet diary and the dietitian to make sure that at least the right combinations of the right foods are going in on a regular basis.

the other thing to consider is that all these things work together. everyone knows that vit c helps you absorb plant iron but it's i think less well known that you need to provide plenty of magnesium to interact with vitamin d3 whether it's from sunlight, food or supplements. a low mag level is one of several reasons a person can have trouble getting their d3 levels up. there are lots of fun details to learn re chemical forms, doses, combinations and timing.

good luck with your tests - please get your own copy of the results so that you're not just left with the usual 'everything's normal' info and no opportunity to look for action items.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: Undiagnosed

Post by robbie » Mon Sep 09, 2019 2:26 pm

MS is labeled as a “silent disease” or an “invisible disability.” Many people with MS look no different from someone without it because some of the symptoms, such as blurred vision, sensory problems, and chronic pain, are not visible. However, someone with MS may need special accommodations even though they don’t have mobility issues and seem “fine.”

MS is also called a silent disease because even during remission, the disease still progresses. This is sometimes referred to as the “silent progression” of MS.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
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2 cigars a day
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NHE
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Re: Undiagnosed

Post by NHE » Mon Sep 09, 2019 9:51 pm

Ilovecoffee wrote:
Sun Sep 08, 2019 8:24 am
So damage can occur without symptoms during a remission? Sorry if I’m not making any sense.
Yes. People can have lesions for which they have no clinical symptoms.

See the figure below

Image


In addition, the following page has a time lapse video of a patient who had serial MRIs for one year. The video shows that there are an abundant number of lesions in the brain that come and go. However, the patient was completely asymptomatic during this time period.

http://www.msdiscovery.org/news/news_sy ... -meets-eye

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jimmylegs
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Re: Undiagnosed

Post by jimmylegs » Tue Sep 10, 2019 4:51 am

i remember that feeling of urgency and desperation while waiting for the diagnostic process to work itself out. unfortunately it is a process and no matter the highly variable facts of ms progression, the docs do have a set of steps to complete which may or may not result in an ms dx in your case. in the meantime, please take the best care of yourself that you can. including minimizing stress!

how did testing go? do you have a record of the tests they ran other than the d3 you mentioned? at a minimum that should tell you whether they've included everything relevant from the outset, or if there are other tests you could ask for. action items are good :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Ilovecoffee
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Re: Undiagnosed

Post by Ilovecoffee » Wed Sep 11, 2019 4:01 pm

Thank you. I’ve been trying not to stress but it’s been so hard. It’s been so long since this last happened that I just kinda forgot about ms. I typed out some of my test results.. the ones I thought were important. I was shocked that my vitamin D was low because I thought I spent a lot of time in the sun this summer.

Vitamin b12 309pmol/L
Ferritin 7 ug/L
Sodium 142 mmol/L
Potassium 4.2 mmol/L
Creatinine 72 umol/L
eGFR 97

Calcium ionized 1.21 mmol/L
pH 7.37
Calcium ionized adjusted to 7.4pH 1.20
TSH 1.36mlUL
HydroxyVitamin D 57nmol/L

My hemoglobin is also low but that was expected since I had a miscarriage back in june. Now wondering if this flare-up is linked to the miscarriage. :(

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jimmylegs
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Re: Undiagnosed

Post by jimmylegs » Wed Sep 11, 2019 4:56 pm

it definitely can be hard not to stress. and it's a catch 22 because stress actually depletes nutrients. ridiculous!

as for these results, great turnaround time. and yay you're speaking my language units-wise ;)

b12 can go higher. i mentioned the unscientific 370 cutoff - i actually aim for 500 personally which is above and beyond in pmol/l but won't do any harm. for that one you can get your feesh on http://www.whfoods.com/genpage.php?tnam ... #foodchart or if you plan to use supplements please use a b complex. nature doesn't do nutrients in isolation right?

ferritin can go to 80 but don't throw an iron supplement at that picture without managing for its effects on other essentials like zinc. you can add vitamin C foods like red bell pepper to help absorb iron from plant foods, cook in cast iron, store an 'iron fish' in any flour container you might be in the habit of using, etc etc. not to mention greens n beans
http://www.whfoods.com/genpage.php?tnam ... #foodchart
and in the animal products dept, looks like steak and kidney pie. with a side of caviar?? lol.
USDA Food Composition Databases https://bit.ly/2khW5mw
would you happen to be a shellfish fan? if so i can link you to a chowder recipe that is just chock full of dietary iron and zinc that you can use to boost without worrying about interactions/consequences the way we need to when using supplements.

if you do go with an iron supplement, do be sure to balance it with zinc. that's a different and more detailed convo for another time.

strange but true: i know far less about the main electrolytes than the trace elements. Na and K just don't tend to come up that often in ms land. i don't know the range for sodium and i feel like that potassium number is okay but could be higher. same for calcium it's not on the radar except in relation to magnesium and vit d3 and it's more about whether it's too high - hypercalcemia bad.

low d3 in spite of sun time can be a few things. it's suggestive of low essential cofactors particularly magnesium. a pretty typical problem. a friend and i also got some direct experience recently on the effects of body size on d3 dose response. we both found out our levels were crap around the same time although we were investigating for different reasons. we both did a standard 500,000 IU regimen nominally to boost levels by 50 nmol/l. we did 50k per day (always taken with magnesium) for 10 days. our results varied to match differing results seen in research depending on body size. in the study the normal weight group achieved a 50 nmol level increase. the overweight group's levels went up by 40 (like me) and the obese group's levels went up by 30 (like my friend). i did a second round, plus i was pushing hard with the magnesium and other cofactors as well, and at last test i had got my d3 up to 166 nmol/l which was beyond what i was aiming for, so mission accomplished :D

considering i am not a parent and not a pro i have a weird amount of xp with women's nutrition associated w fertility. you've seen cristin's tangentially related story. there are some other old posts kicking around on here documenting one member's long slow progress and multiple miscarriages (i think FIVE) to finally meet with success. i also had a supervisor at work a long time ago now, who took some nutritional advice from me and was pregnant in 6 weeks having tried and failed for the 2 years prior.

if you don't mind i would like to hear more about your use of prenatal and postnatal/lactation multis during and after your last three pregnancies. especially given your sad loss as you work on a fourth.

if you can surprise me at some point with serum zinc (i'll take plasma zinc if that's what's available - as long as i know for sure which test was run!) and serum magnesium levels that would be great :D you want to know the zinc largely so you know how careful you need to be with any iron inputs. and you want the magnesium info because of the interaction with d3. i bet you could just add mag and watch the d3 level rise on its own; they've shown that effect in research.

and as for mag foods, go green. look at this cute little mg hiding out in the chlorophyll :D

Image

you can also take epsom salt baths. the magnesium sulfate will get into you for sure. mag is good for all kinds of things, including stress. this past year my friend used epsom salt baths to fight the bone pain from her chemo and it worked. we knew it was sucking her mag status dry because they monitored it in the hospital and would add mag to her iv if it went below something ridiculous like 0.50 mmol/l (i aim for more like 1.1!!). she would be in agony at night and she actually wasn't allowed to do oral supplements, but the epsom salts baths did the trick to let her at least fall asleep at night.

all kinds of healthful steps you can take. let me know if you want that chowder recipe!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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NHE
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Re: Undiagnosed

Post by NHE » Wed Sep 11, 2019 5:13 pm

Ilovecoffee wrote:
Wed Sep 11, 2019 4:01 pm
HydroxyVitamin D 57nmol/L
25-OH-Vitam D3 at 57 nmol/L = 22.8 ng/mL. This is a bit low. Many recommendations suggest 50-60 ng/mL is more desirable. Vitamin D3 needs to consumed with magnesium. Do you currently take a magnesium supplement? Try a highly absorbable form such as magnesium glycinate. Take some with your D3 and some at a different time, e.g., morning and evening. Note that D3 is best absorbed with dietary fat and it can block melatonin production so take it in the morning or mid-day.

Ilovecoffee
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Re: Undiagnosed

Post by Ilovecoffee » Fri Sep 13, 2019 7:00 pm

Wow thanks for all the advice guys. And yes I would like that chowder recipe. ☝️

I was prescribed iron and vitamin d supplements. the dr mentioned nothing about magnesium but I will be sure to pick some up. Unfortunately they didn’t even test my zinc and magnesium levels. :( He also referred me to a neurologist.

I was horrible about remembering to take my prenatal vitamins in my pregnancies and didn’t even take any postpartum. The brand I took in all my pregnancies was called materna.

I’ve been having a troubling new symptom... weird pains in my stomach and spine. :( I also get random pains in my legs that come and go. The constant urge to urinate is gone but there is still a feeling of weird pressure there that comes and goes. And TMI but I’m currently on my period and I feel like most of the cramps are felt in my spine rather than in the uterus. I’m worried that the pain on my spine are lesions. Can you feel lesions? Sorry if that sounds dumb.

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