Any thoughts would be greatly appreciated

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Post Reply
driver4101
Newbie
Posts: 3
Joined: Sun Jan 13, 2019 5:38 pm

Any thoughts would be greatly appreciated

Post by driver4101 » Mon Jan 14, 2019 10:06 am

My wife has been having some health issues and we can not figure out what is happening, hoping that someone may have some insight or ideas for us.

This all started with severe vertigo, fatigue. Went to our PCP and was told she could have an ear infection or ear stones. Took meds, two rounds of prednisone and it eventually went away but not for several weeks.

Over the past 5 months all of the following symptoms have appeared. Some symptoms last for only minutes or hours while others have lasted weeks or months. There is no rhyme or reason to the symptoms that we can see.

Cognitive Issues – Problems finding words, feel like things are moving faster than I can process them. Feeling extremely confused and overwhelmed when in a busy or loud space. Unable to process what is happening around me or focus on a task or conversation because I am so overloaded with trying to process what is going on.

Vision Disturbances - Vision can range from being blurry, spotty or snowy, trailing images and seeing after images. Complete and thorough eye exam on 10/11/2018, (findings normal) and again on 12/14/2018 (findings normal). No optic neuritis has been found. The ophthalmologist said that he thought that the muscles that control my eyes were not functioning properly. The longest a vision problem has lasted was 4 or 5 days, often I have it for only a couple hours or a day.

Leg Spasticity –Legs feel stiff, heavy, hard and sore every day. Often they feel weak also. This has been consistent since the beginning and never stops.

Spasms –Toes, legs, arms and fingers move uncontrollably. Sometimes it is just once and other times it will be 5 or 6 times in a row, rhythmically. This also happens while I am asleep, all night long.

Internal Vibrations/shaking - I feel like I am shaking and vibrating from the inside.

Abnormal Sensations – Numbness, burning and tingling in arms and legs. Completely numb patches on chest and sometimes no vaginal sensation at all. Have a hard time feeling anything cold on my right side.
Urgent urination and leaking – Often has a large spot of urine in underwear, one time I could not make it onto the toilet before I started peeing on myself.

Heat Intolerance – A hot shower often makes me feel worse overall and makes my symptoms more pronounced.

Balance problems and Dizziness - Balance is off, I find myself holding on to walls or other objects because I feel unsteady. Going up stairs is sometimes impossible without railings.

Fatigue - Every task feels like it is at least 5 times harder than it used to be. Taking a shower requires me to rest for 20 minutes after word.

Jaw pain – Pain from back of jaw to chin, sometimes cheeks tingle also.

Chest tightness/Spasticity - Chest feels tight, like I am being squeezed or have something tight around my chest. Can effect right or left side or both.



Our PCP suspects MS, ordered an MRI of her brain and no issues were found.

Went to a neurologist and she told us that she may have silent migraines and prescribed her Trokendi XR. This caused severe cognitive issues.

Went to second neurologist and was told to stop taking the Trokendi. Had 169 blood tests done, here is a link to the results.

https://docs.google.com/document/d/1u2w ... sp=sharing

The neurologist told her to take D, B12 and iron along with her multi-vitamin. They were all low but not low enough to cause the issues she is having we were told.

Had EMG and nerve velocity test, normal.

Neurologist said she doesn’t know what’s wrong and that her symptoms do not line up with a particular disease or disorder.

Her PCP has ordered a C spine MRI, that is in 2 days.

Thank you for any thoughts you may have for us.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Any thoughts would be greatly appreciated

Post by jimmylegs » Mon Jan 14, 2019 10:23 am

thank you for linking to the bloodwork results. i expect that to be very useful. comments to follow.
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!

ElliotB
Family Elder
Posts: 1931
Joined: Mon Feb 03, 2014 4:08 pm

Re: Any thoughts would be greatly appreciated

Post by ElliotB » Mon Jan 14, 2019 10:59 am

Welcome to TIMS. Sorry to hear your wife is not doing well. Since MS is suspected, it may be a good idea to see a Neurologist that specializes in MS - that doctor will, if MS is truly a possibility, likely suggest a MRI of her spine and also possibly a LP (spinal tap).

Keep in mind that there are many, many illnesses that mimic the symptoms of MS.

While you wait for a diagnosis, there is a lot you can do to help her possibly recover sooner with regard to diet/nutrition, exercise, sleep, and the elimination of all stress from her day to day life. There is a lot of valuable info here on TIMS. If you have specific questions, let me know...

Good luck!!
Last edited by ElliotB on Mon Jan 14, 2019 11:33 am, edited 1 time in total.

driver4101
Newbie
Posts: 3
Joined: Sun Jan 13, 2019 5:38 pm

Re: Any thoughts would be greatly appreciated

Post by driver4101 » Mon Jan 14, 2019 11:15 am

We are having a C spine MRI in a couple days. We asked our PCP if she would order it and she did. Hoping it will provide answers, or at least a clue.

Is there a source or list of MS Nurologists online some where? We live in Pennsylvania.

ElliotB
Family Elder
Posts: 1931
Joined: Mon Feb 03, 2014 4:08 pm

Re: Any thoughts would be greatly appreciated

Post by ElliotB » Mon Jan 14, 2019 11:43 am

Your best bet would be to get a referral from your PCP or directly from your insurance company.

Again, if you are going to see a neurologist, it is a very, very good idea to see one that specializes with MS.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Any thoughts would be greatly appreciated

Post by jimmylegs » Mon Jan 14, 2019 12:00 pm

ok re
10 Nov 2018
FERRITIN 13.8 ng/mL - 8-388 ng/ml
Copper Serum 122.0 {mcg/dl} - 70-175 mcg/dL
Vitamin B1 (Thiamin) 10.0 nmol/L - 8-30 nmol/L
VITAMIN B6 12.7 ng/mL - 2.1-21.7 ng/mL
FOLATE** 22.43 ng/mL - >5.38 ng/ml
VITAMIN B12 461.0 pg/mL - 211-911 pg/ml
VITAMIN D 25 HYDROXY 20.6 ng/mL LX 30-100 ng/ml
VIT E ALPHA-TOCOPHEROL 9.4 mg/L - 5.7-19.9 mg/L
BETA&GAMMA-TOCOPHEROL <1.0 - <=4.3 mg/L
adding iron is great for ferritin status but also depletes zinc. if you start taking iron when zinc is already low, a suboptimal zinc situation will be made worse.
Q1: how much zinc is in the multi?
Q2: can you link to the label details?

that copper result is decent as long as it is lower than the serum zinc level, which is missing. copper is another essential element that will be depleted when zinc is taken. it's good to know that copper level is up there, and has room to come down. high copper and low zinc status at the same time, ie a high copper zinc ratio, is often associated with illness. best if the ratio in serum is less than one, but no lower than 0.7.

vitamin B1 seems to be on the low side. B1 figures prominently in a popular but less than scientific protocol for ms. i used the protocol (in modified form) and it helped me a lot. it made sense in my case because overall it represented a major change in direction from diet prior to dx.
Q3: i wonder how much B1 is in the multi, compared to daily requirements.

B6 and folate look decent.

B12 is on the low side per another standard with dubious academic support, namely a minimum 500 pg/ml level. i use that target regardless, to be on the safe side. i personally have a terrible b12 history so i definitely needed to work on it.
Q4: how much supplemental b12 at present?

re vitamin D3
Q5: what is the prescribed amount?
Q6: were any cofactors prescribed other than what's in the multi? i am particularly interested in magnesium. (including the form and amount in the multi)

re vitamin E, level looks good. it's another nutrient that looms large in that less-than-optimally-academic multinutrient protocol for ms mentioned above re vit B1. i do have a specific balanced E complex supplement in my regimen, in addition to a much better diet after dx.

so, overall it looks like you are on the right track nutritionally, with a couple info gaps which could stand filling.
it would have been nice if testing had also evaluated serum magnesium and serum zinc. subclinical mag and zinc deficit (ie low normal levels) are a documented characteristic of ms patients. if additional testing is not an option going forward, you can evaluate intake independently via standardized diet diary (there are many online templates like this one http://www.ucdenver.edu/research/CCTSI/ ... ryForm.pdf ).

Q7: what are the chemical forms, doses, combinations and timing for the supplements taken?

fwiw, i had many of the symptoms described above when i was deficient in magnesium and zinc. i associate magnesium with the physical symptoms and zinc with my worst cognitive symptoms.
(i do have permanent damage manifesting mostly as numbness, which is a residual from the now-corrected B12 problem).
i also did very well for 12 years post dx, got a bit complacent after about 9, slacked off on the self care, and had a rough start to 2018 as a result. very much back on best behaviour now!!!

if you can optimize the nutrient part of the overall equation, at least the docs won't have any subclinical deficit info muddying the diagnostic picture :)
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!

driver4101
Newbie
Posts: 3
Joined: Sun Jan 13, 2019 5:38 pm

Re: Any thoughts would be greatly appreciated

Post by driver4101 » Mon Jan 14, 2019 1:19 pm

Thank you so much jimmylegs!

Q1: how much zinc is in the multi?
A1: 15 MG

Q2: can you link to the label details?
A2: Yes; www.amazon.com/GNC-Womens-Ultra-Mega-ca ... B001KYVT4Q

Q3: i wonder how much B1 is in the multi, compared to daily requirements.
A3: 50 MG

Q4: how much supplemental b12 at present?
A4: 50 MCG in multi plus 1,000 MCG Supplemented

Q5: what is the prescribed amount? (D3)
A5: 1,600 IU in multi plus 2,000 IU in supplement

Q6: were any cofactors prescribed other than what's in the multi? i am particularly interested in magnesium. (including the form and amount in the multi)
A6: None were prescribed. 100 MG of Magnesium Oxide is in the multi.

Q7: what are the chemical forms, doses, combinations and timing for the supplements taken?
A7: One serving of the multi is two capsules, she takes one at night and one in the morning. The supplements are taken at lunch (D, B12 and Iron).

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Any thoughts would be greatly appreciated

Post by jimmylegs » Mon Jan 14, 2019 2:55 pm

more great info.

that zinc intake should be okay for maintenance in healthy individuals. it may not be enough to maintain good status when iron supplementation is added to the mix.
as long as zinc status is good, a short term iron boost should not be a problem.
it would be better if a serum zinc level were known, as well as any dietary habits (eg low intake, choices with suboptimal bioavailability) and/or routine medication(s) which could impair zinc absorption/retention/utilization.
related: http://pennstatehershey.adam.com/conten ... gid=000728

thx for the multi label link.

b vit amounts look more than fine.
Q8: is the multi new since those nov tests were run?

re vit D3, the amount looks good, but you may wish to consider some supporting modifications.

re multi, good to see that both capsules are being taken. please note that the magnesium delivered in total is 25% of daily requirements for a healthy person of average body size, before accounting for any lifestyle influences known to affect magnesium status.

a serum magnesium test and/or a diet and medication diary would provide a better sense of the overall picture in this regard.
the list of lifestyle influences that can deplete magnesium is long, and it includes supplemental vitamin d3 intake.
the advice which did me the most good in the d3-magnesium department came from a pharmacist about a decade ago:
increase magnesium intake, and ensure half is taken *with* d3 and half is taken *well away from* d3.
with that in mind, it looks likely that the lion's share of magnesium in the multi is being tied up in vitamin d3 interactions, and therefore not delivering on its other roles.
the larger dose of d3 at noon can be expected to have an overall magnesium depleting effect.

going forward, magnesium-related actions to consider:
1. track existing dietary magnesium intakes
2. increase dietary magnesium as needed from healthy whole food sources
3. invest in a high quality magnesium supplement such as magnesium glycinate (which is basically oxide complexed with glycine to improve absorption) to balance the noon vit d3 intake and if needed, to add a second carefully timed non-vit d3 magnesium boost.

if magnesium is a legitimate culprit, the results of adding magnesium should be noticeable in a matter of days. adding more magnesium should also help improve the serum d3 level response to the extra d3 intake.

related:
https://scholar.google.ca/scholar?as_vi ... as_sdt=1,5
https://scholar.google.ca/scholar?hl=en ... loy+-crack
https://scholar.google.ca/scholar?hl=en ... 2magnesium
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!

User avatar
Scott1
Volunteer Moderator
Posts: 1483
Joined: Wed Oct 22, 2008 2:00 pm

Re: Any thoughts would be greatly appreciated

Post by Scott1 » Tue Jan 15, 2019 10:40 pm

Hi,

Firstly, we're not doctors so it's just an observation. You should ask them why the white blood cell results have an "H" next them and why there's an "H" next to urine bacteria. If there is an infection, white blood cell numbers will be up so I'd look in that direction first. The good news is most of the kidney and liver numbers appear normal.

I'd say something is going on and they need to answer those questions. If one odd reading here and there was outside the range then there's nothing to report but, although they are mild, the odd numbers all say a bacteria is at work. You need to quiz them and not be put off by unsupported assurances.

Regards,

nexxus
Getting to Know You...
Posts: 17
Joined: Wed Aug 15, 2018 7:51 am

Re: Any thoughts would be greatly appreciated

Post by nexxus » Wed Jan 30, 2019 6:02 am

This could be lyme disease, but you will need to go to a lyme disease specialist to find out, don't rely on a regular doctor and the western blot test to get answers or treatment. Or it could also be mercury (and heavy metal) toxicity which is something an integrative doctor can test for.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post