In Limbo

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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dmt1972
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In Limbo

Post by dmt1972 » Sun May 05, 2019 5:20 am

Hello to all. 47 yr old female w/numbness/tingling in right hand and arm; major brain fog; problems at times with my balance and walking; vertigo; ringing in ears; extreme fatigue (for a long time now). Struggling at my 40 hr week job, demoted this week due to errors/performance (this is a 1st for me); as the week goes on I literally feel like I'm going to drop.

EMG done this week....normal. Neuro said it points more to a central nervous system problem?

Vit B at 474 pg/mL Neuro said this is normal (her range is 211 -950)?

MRI scheduled in 6 days. Afraid of results or lack of results, as this is not "in my head" it is real.

So confused and scared, as I am the breadwinner in my household since my husband had to retire 6 yrs ago due to chronic health issues.

Thank you for listening,
Much Love,
Dawn

ElliotB
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Re: In Limbo

Post by ElliotB » Sun May 05, 2019 7:38 am

Welcome to TIMS. Sorry to hear you are not feeling well. There is a tremendous amount of useful info on this site and know that you are among friends who care.

A couple of quick suggestions. If you have not already done so, have comprehensive blood work done. Your vitamin D level is very important to know and of course all levels are important and you want to know if you have any deficiencies so your can balance them.

ALSO, consider a gluten free diet that could help with your brain fog. Many people have major improvements with this symptom alone and others as well by making this simple diet adjustment. It is not easy to do but...

Do you take any nutritional supplements? What type of diet are you following?

Please let us know how things go with your MRI next week.
Last edited by ElliotB on Sun May 05, 2019 10:01 am, edited 1 time in total.

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jimmylegs
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Re: In Limbo

Post by jimmylegs » Sun May 05, 2019 9:57 am

hi and welcome d :) sorry to read about the symptoms you are dealing with. i can contribute most about nutrition and am not a lot of use where other questions come into play. so, here goes:

re fatigue, since it's very common and basic, do you have a serum ferritin level on file, just to rule out low iron status?

your b12 level looks reassuringly decent. i was certainly b12 deficient leading up to diagnosis and made some major lifestyle modifications afterwards.
many patients aim for 500 pg/ml (including me) but the evidence backing up that target is slim. if you check out the levels in the studies below you may decide to feel reasonably smug about 474 ;)
  • Vitamin B12 Deficiency and Multiple Sclerosis; Is there Any Association? (2012)
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3354399/
    "There were 13 (21.6%) MS patients and 10 (26.3%) controls with low serum B12 concentration with no significant difference between the groups; P>0.05. The mean serum vitamin B12 concentration in MS patients (108.9±45.3 pg/mL) was not significantly different compared with controls (98.9±44.4 pg/mL); P=0.284. Likewise, there was no correlation between the concentration of serum vitamin B12 and disease’ age of onset, duration, subtypes, or disability status."
^ this one amazes me since both patient and control means are so low. the control mean above would not even be high enough to flag as deficient at my local lab. it would come back 'undetectable'. i suspect some kind of reporting error.
  • Serum vitamin B12, folate, and homocysteine levels and their association with clinical and electrophysiological parameters in multiple sclerosis (2009)
    https://www.ncbi.nlm.nih.gov/pubmed/19153046
    "...Table 2
    Vitamin B12, folate, homocysteine ... in patients with multiple sclerosis and healthy control subjects
    parameter..................patients...............healthies
    Vitamin B12 (pg/mL).....221.26 ± 72.75....257.43 ± 105.67 0.188
    Folate (ng/mL)...............5.11 ± 2.10........5.97 ± 2.15 0.077
    Homocysteine (lmol/L)....11.88 ± 4.86......11.63 ± 2.81 0.742"
  • Serum Cobalamin Deficiency Is Uncommon in Multiple Sclerosis (1994)
    https://jamanetwork.com/journals/jamane ... act/593137
    "A Cbl level lower than 301 pg/mL was found in 32 of 156 patients with either clinically definite MS or clinically probable MS but in none of the patients with MYL. Elevated MMA or HCY levels were found in seven of 32 patients with either clinically definite MS or clinically probable MS, six of whom had an elevated HCY level and one of whom had elevated HCY and MMA levels.
^basically, looks like elevated hcy and mma would be unlikely in your case, especially with serum cobalamin levels well above 301...

beyond the genetic hand you (may) have been dealt, there are several other epigenetic/environmental things to consider staying on top of - as mentioned, a key one that you can readily do something about (if needed) being vitamin d3. there's an excellent evidence base for that one although the academic debate re serum targets is ongoing (ms patients have decent reason to aim for between 125-150 ng/ml). if you do need to top up, please take care not to go forward without some attention to essential nutritional vitamin d3 cofactors. important consideration!
  • Vitamin D, cognition, and dementia - A systematic review and meta-analysis (2012)
    https://n.neurology.org/content/79/13/1397.short
    "These results suggest that lower vitamin D concentrations are associated with poorer cognitive function and a higher risk of AD"
there are other things to look at going forward, again specifically regarding cognitive function for this post at least. this next study reminds me of my own personal experience... at one time i was also zinc deficient and i wouldn't have known how to describe the problems i was having but as for one of them, 'spatial working memory' nails it:
  • Effects of zinc supplementation on cognitive function in healthy middle-aged and older adults: the ZENITH study (2006)
    https://www.ncbi.nlm.nih.gov/pubmed/17010236

    "For two out of eight dependent variables, there were significant interactions indicating a beneficial effect (at 3 months only) of both 15 and 30 mg/d on one measure of spatial working memory and a detrimental effect of 15 mg/d on one measure of attention. Further work is required to establish whether these findings generalise to older adults in poorer mental and physical health and with less adequate Zn intake and status than the present sample."
i'm also interested in your SO's chronic health issues. anything worth sharing here? there are many common environmental threads linking chronic illnesses. could be some potential action items worth looking into there as well...

i hope overall that info is somewhat encouraging :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!

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Scott1
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Re: In Limbo

Post by Scott1 » Sun May 05, 2019 1:20 pm

Hi Dawn,

I'm also sorry to hear of your situation. As your husband has problems, do you have to do all the chores at home as well?
If so, you are working at lot more than 40 hours.

Some of the problems people like us have are getting sufficient rest, sufficient nutrition and finding a stress free life. You may not have MS but it sounds like you have all the ingredients to be experiencing these issues.

In the time leading up to the MRI, are you able to call on someone to help around the house to give you half a chance of addressing those factors?

Life isn't dealing you a great set of cards at the moment. Irrespective of how the MRI goes, I think you need to introduce a new card.

Regards,

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dmt1972
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Re: In Limbo

Post by dmt1972 » Mon May 06, 2019 2:42 am

Thank you all for your responses and guidance. I am going to go to a gluten free diet as I had no idea this could possibly help me so much.

Last VitD was 43.7 ng/mL ; In recent years I have struggled with maintaining my VitD level and take a 10,000 unit chewable each day, as my PCP felt I had an absorption issue with the pills because my levels never came up. Lowest result was 15.5 ng/mL

I do not see that zinc and other levels have been tested, so am contacting my PCP for lab work.

Other health issues:
Hypothyroidism - Diagnosed in 2004; Well controlled; hereditary
High Rheumatoid Arthritis Factor: 32 IU/mL; Hereditary (Mom); rheumatologist treated me for what he felt was a "flare" in 2017/2018; am now off of medication; my WBC still hovers around 17.0 K/uL
Right L5-S1 laminotomy, medial facetectomy, incision and removal of herniated disc - 2015; responded well to surgery and physical therapy; PCP ordered MRI of back and neck; took disk to appt w/neuro and neuro said there is nothing on it that would be causing the hand/arm numbness.
Anxiety - Diagnosed in 2013 (but had for years prior and didn't realize what I was feeling was extreme) occasional panic attacks; TMI but stems from 1st husband committing suicide in front of me. Controlled with meditation, prayer, and meds. My PCP is great and knows my history and I am always very upfront with a new physician, as I don't go to the doctor unless I need to and don't want to be labeled as hypochondriac even before they treat me
(which anyone who knows me knows I put my own health off and should have been to dr months ago)

My husband does what he can around the house, but it is very limited, so yes I do work more than 40 hours a week. Never thought of it that way.

Again, thank you all for your kind words and knowledge.

Much Love,
Dawn

ElliotB
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Re: In Limbo

Post by ElliotB » Mon May 06, 2019 6:33 am

My brain fog disappeared and my memory improved dramatically after going on a gluten free diet. I have not had brain fog since and my memory is quite good still (I have been on a gluten free diet for about 5 years). I had a terrible memory all my life UNTIL 5 years ago...

I strongly recommend this inexpensive book, "Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar--Your Brain's Silent Killers", by David Perlmutter. ?You can find it on Amazon.

https://www.amazon.com/Grain-Brain-Surp ... way&sr=8-1
Good luck!
Last edited by ElliotB on Tue May 07, 2019 12:19 am, edited 1 time in total.

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jimmylegs
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Re: In Limbo

Post by jimmylegs » Mon May 06, 2019 7:00 am

hi again :) i am so sorry to read about your first DH. i can't imagine :S

re the important other details posted, let's address this rather large red flag:
  • "Last VitD was 43.7 ng/mL ; In recent years I have struggled with maintaining my VitD level and take a 10,000 unit chewable each day, as my PCP felt I had an absorption issue with the pills because my levels never came up. Lowest result was 15.5 ng/mL".
so with ms as a possibility, you could likely aim for serum 25(OH)vitD3 50-60 ng/ml as long as you are paying attention to other important supporting nutrients.
recalcitrant low d3 status (ie the poor response to pils) screams cofactor issues, ie specific low or absent essential nutrient cofactors needed to interact with d3 for optimal absorption and utilization.
10,000iu of d3 per day without mineral balancing, esp magnesium, may be linked to several of your symptoms.
high dose d3 will be pulling magnesium from your fluids and tissue if it doesn't get enough to work with from a combined dietary and supplemental intake.
so with that said, three questions:
1. could you share your daily routine where multivitamins, multiminerals, or specific mineral supplement products are concerned?
2. how many mgs of magnesium do you estimate you are getting daily from diet and supplements combined?
3. if mineral supplements are in the mix, which specifically do you use, and how have you been timing them in relation to that d3 chewable?
as a previous victim of magnesium deficiency secondary to excessive vit d3 intake, i look forward to your reply :)

going forward, if your PCP is on board with doing a couple more tests, it could be wise to ensure high normal status for both serum magnesium and serum zinc.
related reading of possible interest: viewtopic.php?f=27&t=30924

as an fyi, gluten increases essential nutrient demand. a gluten free diet is one way to help deal with a nutrient poor diet. mind you, it's not the *only* way. another less restrictive option is to boost overall essential nutrient intake via increasing nutrient dense foods, and avoiding excessive gluten. i used to react poorly to gluten (eg discomfort and bloating), especially when zinc deficient. since correcting my zinc deficiency and working on overall nutrient status and *limiting* gluten intake, no lingering issues (that is not to say i haven't done some permanent damage with other nutrient deficits, but at least the gluten sensitivity is over). my cognitive improvements after boosting zinc were dramatic.

related:
Serum zinc in small children with coeliac disease (2009)
https://onlinelibrary.wiley.com/doi/abs ... 08.01085.x
"...Serum zinc concentration is decreased in untreated coeliac children with enteropathy and normalizes on gluten‐free diet."

Correlation Between Dietary Zinc Intakes and Its Serum Levels with Depression Scales in Young Female Students (2010)
https://link.springer.com/article/10.10 ... 009-8572-x
The main objective of this study was to assess the correlation between serum zinc concentrations and dietary zinc intakes with depression scores ...dietary zinc intake is correlated to its serum concentrations; however, the serum zinc levels are inversely correlated to depression scales.
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!

BigDaddy
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Re: In Limbo

Post by BigDaddy » Tue May 07, 2019 12:52 am

Hi Dawn,

Your situation sounds very similar to my own. I’m also sorry to hear that you’ve also experienced so much psychological trauma during your life. I know from my own life experience how much things things take out of you. I’m 45, so we are of a similar age too.

I’ve already given up work for the time being. I have been struggling to work for years despite gradually downgrading to less demanding poorly paid jobs. My last job that a friend got me was as straightforward and easy as it gets, but I still couldn’t manage it and it was so frustrating and embarrassing to fail to do something that I could have done in my sleep a few years ago. I constantly fell over or collapsed through exhaustion and all I had to do was use a machine to roll fabric on to cardboard tubes! It’s heartbreaking.

I wish you well. I don’t know how you see things, but a diagnosis is a starting point. Once you know and you have an idea of the extent of any damage to your brain or spinal cord you can take steps to help yourself and joining this forum is a wise move. There is so much information here, so you are not totally reliant on doctors and meds to help you through it. I’m personally very interested in natural treatments that address lifestyle and potentially underlying causes rather than just treating symptoms with meds.

Good luck.

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