Concerned - Too Many MS Symptoms

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JChapkin
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Concerned - Too Many MS Symptoms

Post by JChapkin » Mon Jan 28, 2019 5:44 am

Good Morning Everyone,

My name is Jason and I am a band director at a large high school in Florida. I am 32 years old. I have had some very strange symptoms for about a year. However, looking back at least four years, MS can explain a lot of things that have happened in my life. I am not sure what I should do. I am looking for guidance on what to do. Who should I see, would they even take me seriously?

I have the following symptoms:

1. Random patches of numbness that come and go. The most likely places are on my hands and feet (Peripheral Neuropathy) This is always like a half numbness. It is very annoying. It has gotten to the point where my hands and feet are almost always half numb. It seems when I touch things or hold things whatever is being touched turns numb as well. I have had these random patches of numbness just about everywhere on my body at some point.

2. I have always been highly intelligent. However, I have noticed in the last year that I often have brain fog. My recall of information has become poor. Especially words. I know exactly what I want to say, I can see it in my mind but it never comes out. Oddly enough it comes out as something completely different. For example, last night I went to a restaurant and I asked my fiance where she found the forks. What came out was "Where did you find the straws?" I say it with such conviction because I am so sure of what I wanted to say but it is wrong. This sort of thing has been happening with increased frequency and it appears to be getting worse as time goes on. Furthermore, I will be in class teaching and writing on the whiteboard simultaneously but what I am saying and what I am writing are two completely different things.

3. Vision issues. I had 20/15 vision for most of my life until about five years ago or so I started losing my distance vision. In the last year I feel like my vision has depreciated at an alarming rate. It is no longer just distance vision but all vision. My right eye is especially bad. In the right eye it almost seems as if colors are washed out and greyish. Furthermore, I feel like I have lost some peripheral vision.

4. Fine motor skills. I feel like I am slowly losing my fine motor skills. Little things like texting on a phone and typing this message seem much more difficult than they used to. I have slowed down significantly and make a plethora of mistakes. Things I have done so much just feel strange.

5. Movement. I have noticed a significant decrease in my walking speed and my gait seems to have changed. I am well aware of it but it is nothing I am consciously doing. This is not significant but noticeable. I feel much stiffer than I used to.

6. Involuntary twitching. My newest symptom is involuntary twitching. It started in my right eyelid about three weeks ago and sometimes spreads down my cheeks. This is intermittent and does not happen all the time but definitely a neurological issue.

7. Dizziness and vertigo. This one comes and goes but sometimes it can be pretty severe. Sometimes it happens while I am driving and I fear for my life. This is one of those symptoms that I had four years ago that could have been my first episode. I had about three months of debilitating dizziness and vertigo. I had to sit down at work while teaching. It was just awful. Doctors could not explain it but they certainly didn't do anything outside of a blood test.

8. Other cognitive deficiencies. I have noticed it is much more difficult to focus and have developed some ADD tendencies. I used to be able to multitask and get stuff done better than most people I know. It is getting harder. Remembering names is becoming an issue sometimes as well. Names of people I see and communicate with every day like my students.

9. Pain. I have had numerous injuries in my life that can explain pain but most of them are really old injuries. I have more pain than someone my age should ever have to endure. I do not know if this is related or not.

10. Bowel problems. I am almost always constipated and I drink a lot of water and eat fairly well.

I currently have a recurrent cholesteatoma in my left ear that needs to be surgically removed soon but it does not explain any of these symptoms as it is not in brain.

What do you all think and what should I do from here? Any advice would be really appreciated. Thank you for your time!

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Re: Concerned - Too Many MS Symptoms

Post by Snoopy » Mon Jan 28, 2019 6:27 am

Hi JChapkin.

Many things could be causing what you are experiencing. You might consider working with your Primary Care Physician who can do testing for different things and refer you to a specialist if necessary.

There is no symptom exclusive to this disease, many different conditions, vitamin/mineral deficiencies, mental health issues, and some medications can cause symptoms similar to MS.

Best wishes...

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Re: Concerned - Too Many MS Symptoms

Post by jimmylegs » Mon Jan 28, 2019 6:37 am

hi and welcome :)

consider presenting this succinct list to your doctor if you have not already done so. i'm not a health pro but i can't see one not taking your list seriously.

from a 'pursuit of health' perspective, consider the known environmental contributions to ms and whether your diet and lifestyle constitute risk factors for chronic illness. if needed, consider asking for a referral to a preventive expert.

nutrition is my wheelhouse (as an amateur). some nutritional factors are established in the mainstream as things to rule out and/or things to manage for possible or actual ms patients. specifically, vitamin b12 and vitamin d3 status. other nutrients are known issues where ms in particular or chronic illness in general are concerned, but can be missed or are subclinical ie not picked up in standard testing. in these cases, incomplete or poorly interpreted testing doesn't necessarily red flag things it should.

that's where a preventive pro can be helpful. if a deficit is not showing up in the bloodwork, it can show up in a diet (/lifestyle/meds) diary. sample:
http://www.ucdenver.edu/research/CCTSI/ ... ryForm.pdf
other versions ask for more but this is the best one i can find quickly to provide a good demo for how to complete.
any medications taken, activity levels and bowel movements are info elements i have seen given space on other examples. you'll impress a registered dietitian if you show up with one of those in hand and filled out :)

in any diagnostic process, the waiting is possibly the least fun part. may as well get it started! and while you wait for the first appointment, taking proactive health-supporting action is a step that is under your control right now.
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: Concerned - Too Many MS Symptoms

Post by ElliotB » Mon Jan 28, 2019 7:19 am

Welcome to TIMS. Sorry to read you are not feeling well.

"What do you all think and what should I do from here? "

Have you seen a doctor yet?

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Re: Concerned - Too Many MS Symptoms

Post by NHE » Mon Jan 28, 2019 11:12 pm

Welcome to ThisIsMS. What tests have you had done so far and what were the results?

JChapkin
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Re: Concerned - Too Many MS Symptoms

Post by JChapkin » Tue Jan 29, 2019 5:13 am

Snoopy wrote:
Mon Jan 28, 2019 6:27 am
Hi JChapkin.

Many things could be causing what you are experiencing. You might consider working with your Primary Care Physician who can do testing for different things and refer you to a specialist if necessary.

There is no symptom exclusive to this disease, many different conditions, vitamin/mineral deficiencies, mental health issues, and some medications can cause symptoms similar to MS.

Best wishes...
Thank you for your response! My primary care physician basically turned me away. I don't like them because my PCP retired and now I am stuck with a conglomerate approach. I never see the same primary as there are close to thirty in the office and they give you first available. I didn't know if I should find a new PCP or go straight to a Neurologist. I am taking both vitamin D3 and a two B complex pills along with a multivitamin as I read that the deficiency could be a problem.

JChapkin
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Re: Concerned - Too Many MS Symptoms

Post by JChapkin » Tue Jan 29, 2019 5:19 am

jimmylegs wrote:
Mon Jan 28, 2019 6:37 am
hi and welcome :)

consider presenting this succinct list to your doctor if you have not already done so. i'm not a health pro but i can't see one not taking your list seriously.

from a 'pursuit of health' perspective, consider the known environmental contributions to ms and whether your diet and lifestyle constitute risk factors for chronic illness. if needed, consider asking for a referral to a preventive expert.

nutrition is my wheelhouse (as an amateur). some nutritional factors are established in the mainstream as things to rule out and/or things to manage for possible or actual ms patients. specifically, vitamin b12 and vitamin d3 status. other nutrients are known issues where ms in particular or chronic illness in general are concerned, but can be missed or are subclinical ie not picked up in standard testing. in these cases, incomplete or poorly interpreted testing doesn't necessarily red flag things it should.

that's where a preventive pro can be helpful. if a deficit is not showing up in the bloodwork, it can show up in a diet (/lifestyle/meds) diary. sample:
http://www.ucdenver.edu/research/CCTSI/ ... ryForm.pdf
other versions ask for more but this is the best one i can find quickly to provide a good demo for how to complete.
any medications taken, activity levels and bowel movements are info elements i have seen given space on other examples. you'll impress a registered dietitian if you show up with one of those in hand and filled out :)

in any diagnostic process, the waiting is possibly the least fun part. may as well get it started! and while you wait for the first appointment, taking proactive health-supporting action is a step that is under your control right now.
Hey Jimmy,

Thank you so much for your timely response and your advice. I definitely try to eat well but my eating schedule is usually not as good as it should be as I work 60-90 hours a week.

Speaking of my work schedule and the stress that goes along with it--I truly think this could be a HUGE factor in my symptoms. Do you think all of these symptoms can manifest themselves from stress and a schedule that never slows down? Do you think MS can be triggered by it? I do not have a family history of MS. I wonder if you can get MS without a family history.

I will definitely have to make sure I get my D3 and B12 checked as soon as I find a better primary care physician. I have been taking supplements for D3 for about nine years and I started two different B complex's with A TON of B12 the past year or so. Of course, I also take a multivitamin.

I will definitely look into a better diet. I have never been able to eat breakfast in the morning. My body seems to revolt and it makes me feel nauseous. Could this be part of the problem? I do eat balanced meals as often as possible and try to eat sweets sparingly and I have increased my water intake ten fold the past year.

Thank you again for your response and insight!

JChapkin
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Re: Concerned - Too Many MS Symptoms

Post by JChapkin » Tue Jan 29, 2019 5:21 am

ElliotB wrote:
Mon Jan 28, 2019 7:19 am
Welcome to TIMS. Sorry to read you are not feeling well.

"What do you all think and what should I do from here? "

Have you seen a doctor yet?
I have seen my primary care physician who just kind of blew me off. I was wondering if I should find another one or go straight to a neurologist. I do not need a referral. Without a referral, I feel like they would blow me off as well.

JChapkin
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Re: Concerned - Too Many MS Symptoms

Post by JChapkin » Tue Jan 29, 2019 5:22 am

NHE wrote:
Mon Jan 28, 2019 11:12 pm
Welcome to ThisIsMS. What tests have you had done so far and what were the results?
Thank you very much! I haven't had anything yet as my doctor dismissed me. I am hoping to find a better primary care physician.

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Re: Concerned - Too Many MS Symptoms

Post by NHE » Tue Jan 29, 2019 5:58 am

JChapkin wrote:
Tue Jan 29, 2019 5:19 am
I will definitely have to make sure I get my D3 and B12 checked as soon as I find a better primary care physician. I have been taking supplements for D3 for about nine years and I started two different B complex's with A TON of B12 the past year or so. Of course, I also take a multivitamin.
Before going in for either a B12 or D3 test, be sure to do a washout by stopping your supplements 5-7 days prior to the blood draws for your tests. This will help ensure more accurate results.

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Re: Concerned - Too Many MS Symptoms

Post by jimmylegs » Tue Jan 29, 2019 6:14 am

hi again,

well it does sound like a better doc may be in order. had you shown the previous doc your list above?

re diet and lifestyle, stress on its own depletes nutrients which are not there if you don't provide. are you working that hard because you absolutely must, or because you're prioritizing others before self care and appropriate work-life balance? (i have been guilty of this tendency so i wonder if you can relate).

magnesium is one example of a nutrient which can be depleted (excreted) when stressed. in research it has tested low normal in serum and deficient in tissue of ms patients and in other kinds of chronic illness as well. common dietary intakes are below standard recommendations. some researchers suggest that even the intake recommendations are not high enough to suit the various demands of modern lifestyles.

if i may ask, can you elaborate re 9 years of vitamin d3 supplementation? how much have you taken daily? do you blend it with any essential cofactors, other than the multi? which specific b complex and multi do you take? if vitamin d3 is taken without caution, it can deplete magnesium levels all by itself. certain of the b vitamins can cause neurological damage if taken in excess.

coincidentally i just read that 1 in 8 ms patients have a relative with ms so it's not a requirement by any means. environmental influences are clear contributors.

this may sound counterintuitive, but even nausea after eating can indicate a background essential nutrient issue. it might be wise to take a closer look at your dietary patterns, as individuals' interpretations of balanced diet can sometimes diverge widely from the science underlying food guide recommendations.

i have recently made a concerted effort to eat breakfast on time. it's small on purpose, but nutritious and i make sure to have a morning snack ready to follow up. i prep for monday to friday mornings on sundays. there's always a large batch of homemade soup on the go for lunches.

sparing intake of sweets is very wise. how much water do you drink each day, and what is the source? tap? groundwater? city? filtered? a bottled brand?

ok with all that said, i should go look after myself for a while! ;)
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!

JChapkin
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Posts: 7
Joined: Sun Jan 27, 2019 8:21 pm

Re: Concerned - Too Many MS Symptoms

Post by JChapkin » Tue Jan 29, 2019 6:22 am

NHE wrote:
Tue Jan 29, 2019 5:58 am
JChapkin wrote:
Tue Jan 29, 2019 5:19 am
I will definitely have to make sure I get my D3 and B12 checked as soon as I find a better primary care physician. I have been taking supplements for D3 for about nine years and I started two different B complex's with A TON of B12 the past year or so. Of course, I also take a multivitamin.
Before going in for either a B12 or D3 test, be sure to do a washout by stopping your supplements 5-7 days prior to the blood draws for your tests. This will help ensure more accurate results.
Will do, thank you for the tip!

JChapkin
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Re: Concerned - Too Many MS Symptoms

Post by JChapkin » Tue Jan 29, 2019 6:51 am

jimmylegs wrote:
Tue Jan 29, 2019 6:14 am
hi again,

well it does sound like a better doc may be in order. had you shown the previous doc your list above?

re diet and lifestyle, stress on its own depletes nutrients which are not there if you don't provide. are you working that hard because you absolutely must, or because you're prioritizing others before self care and appropriate work-life balance? (i have been guilty of this tendency so i wonder if you can relate).

magnesium is one example of a nutrient which can be depleted (excreted) when stressed. in research it has tested low normal in serum and deficient in tissue of ms patients and in other kinds of chronic illness as well. common dietary intakes are below standard recommendations. some researchers suggest that even the intake recommendations are not high enough to suit the various demands of modern lifestyles.

if i may ask, can you elaborate re 9 years of vitamin d3 supplementation? how much have you taken daily? do you blend it with any essential cofactors, other than the multi? which specific b complex and multi do you take? if vitamin d3 is taken without caution, it can deplete magnesium levels all by itself. certain of the b vitamins can cause neurological damage if taken in excess.

coincidentally i just read that 1 in 8 ms patients have a relative with ms so it's not a requirement by any means. environmental influences are clear contributors.

this may sound counterintuitive, but even nausea after eating can indicate a background essential nutrient issue. it might be wise to take a closer look at your dietary patterns, as individuals' interpretations of balanced diet can sometimes diverge widely from the science underlying food guide recommendations.

i have recently made a concerted effort to eat breakfast on time. it's small on purpose, but nutritious and i make sure to have a morning snack ready to follow up. i prep for monday to friday mornings on sundays. there's always a large batch of homemade soup on the go for lunches.

sparing intake of sweets is very wise. how much water do you drink each day, and what is the source? tap? groundwater? city? filtered? a bottled brand?

ok with all that said, i should go look after myself for a while! ;)
Thank you again for the timely response! I didn't write the list down but I mentioned all of it. I had A LOT of numbness yesterday evening. I had partial numbness from my elbow to my fingers on both hands and patchy around my face as well as the entirety of my feet.

I am working that hard because I have to. As a band director, I have to work extra rehearsals after school every day. SO MANY MEETINGS and so much paperwork. Extra concerts, field trips, competitions, etc. Then after all of that, I have to wait on the kids to be picked up which can sometimes take two hours after every event. I work 12-16 hour days every day and a fair amount of weekends too. Work-life balance is nearly impossible and I am about to get married in June.

I have magnesium. I am not currently taking it but have considered it. Do you think I should give it a go? I had a primary care physician in a different state tell me that D3 was the most commonly deficient problem in America and most people didn't know. I don't think it ever showed up as low back then but he told me to start taking it. I think I am at around 500% daily on top of the multivitamin. I take NatureMade chewable ones. 2 @ 1000 IU. I don't blend it with anything that I am aware of.

I take the amazon basics chewable B complex and NutraFitz Naturals Whole Food B-Complex. I take one of each.

That's a really great idea that I have considered several times--prepping for the week. I truly need to try it. I know I should eat breakfast each morning. It is just so hard!

When I am at work I drink 2-3 water bottles (Brand changes) a day on top of the coffee that I drink. Recently, I have been drinking one Bai antioxidant bottle a day. At home, I drink 1-2 Yeti cups full of filtered water from the tap.

You have been very helpful and I appreciate it, thank you!

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Re: Concerned - Too Many MS Symptoms

Post by jimmylegs » Tue Jan 29, 2019 8:01 am

hi again, the numbness can be scary but if it's transient there may still be things you can do to address the problem. also my emphasis is always on nutrition even if secondary to stress, but there are of course other factors which may be in play.

re rehearsals after school every day, i am reminded of an exercise the class was given long ago in a college marketing course. the prof gave us a scenario to critique. the scenario made clear that the boss was working very hard. my comment was that he was working hard but not smart. when i looked up the following pdf, this stood out

download link https://www.midwestclinic.org/downloads ... 994aad.pdf
" Spend time with your family. They are the most important people in your life!
 Find a hobby or activity and make time for it on a regular basis.
 Extra rehearsals are essential. However, it’s not necessarily how much time you rehearse but how efficiently you
rehearse. More rehearsal time doesn’t necessarily create a better band.
 When scheduling after school rehearsals, consider yours and your student’s families and personal lives. Three
afternoon/night rehearsals, a Friday night football game, and Saturday Contest each week may work for you but is it good
for our families or personal lives?"

i have only taught private music lessons in my time so can't relate to a band director's xp at all - that said, can you envision any efficiencies which might help you free up some hours? any ways you might be able to delegate any responsibilities? i'm wondering for example if a team of parents couldn't take on a rotation to supervise students waiting for pickup after an event. i don't know if that is a practical suggestion or not. in other education settings i've experienced, there have been penalties for individual families' tardiness along the lines of if you're late, the group is heading out on schedule anyway. we'll check in to see if you've arrived, but the group will not wait for one latecomer. i don't know if anything said there might be roughly applicable in your situation.

re magnesium, do you have a sense of your intake from dietary sources? what specific magnesium product do you have on hand? can you link to an image of the label dtls? and to clarify did you mix up anything re mag and d3 intakes? info seems to jump back and forth a bit

2000IU of d3 daily sounds reasonable. i'm curious about your past serum d3 levels if you have or can get a copy of older results.

context:
Vitamin D Deficiency and Seasonal Variation in an Adult South Florida Population (2005)
https://academic.oup.com/jcem/article/90/3/1557/2836809

"The mean (±SD) winter 25(OH)D concentration was 24.9 ± 8.7 ng/ml (62.3 ± 21.8 nmol/liter) in men and 22.4 ± 8.2 ng/ml (56.0 ± 20.5 nmol/liter) in women. In winter, the prevalence of hypovitaminosis D, defined as 25(OH)D less than 20 ng/ml (50 nmol/liter), was 38% and 40% in men and women, respectively.
In the 99 subjects who returned for the end of summer visit, the mean 25(OH)D concentration was 31.0 ± 11.0 ng/ml (77.5 ± 27.5 nmol/liter) in men and 25.0 ± 9.4 ng/ml (62.5 ± 23.5 nmol/liter) in women. Seasonal variation represented a 14% summer increase in 25(OH)D concentrations in men and a 13% increase in women, both of which were statistically significant. The prevalence of hypovitaminosis D is considerable even in southern latitudes and should be taken into account in the evaluation of postmenopausal and male osteoporosis."

Vitamin D Deficiency in the Southern United States (2011)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100890/

rather than the 50 nmol/l lower cutoff specified above, other academic sources would identify serum levels below 75 nmol/l as inadequate or insufficient, which would obviously increase the percent with hypovitaminosis D. i'm more inclined to consider 100 nmol/l a suitable lower cutoff.

as for other nutrients, if you are able to link to an image of the label details on your b complex and multi products, that info may be useful.

weekly prep makes all the difference for me! all i do is thaw out 4 servings of berries and cook 4 servings of steel cut oats (total is 1/2c dry, 1c cooked so these are not huge meals AT ALL). i take a break from berries and oats midweek and have toast with some kind of nut butter. mid-morning snack is 1/4 c homemade (not too) salty sweet trail mix. ok that used up my break - back to business i go!

good luck
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: Concerned - Too Many MS Symptoms

Post by ElliotB » Tue Jan 29, 2019 11:01 am

If you are not happy with your PCP, you should change. If you don't need a referral to see a neurologist, there is no point to see a PCP if your goal is to see a neurologist. Since you suspect MS, make sure you only see a neurologist that specializes in MS.

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