No one knows what's wrong with me.

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katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Sep 28, 2020 8:44 am

Hi, Jimmy! I am still using the vitamins that I had. I planned to order what you recommended, but with missing 4 days of work without pay and having appt's that I also will have to take off for, I am a little worried about money. I will try to get the other vitamins within the next month. The only thing I discontinued was the sublingual b12. I still take the shot, but since the b12 was so high on the bloodwork, I decided not to add to it. I looked back at all my previous bloodwork and I don't see any results for serum mag and zinc unless it's called something else or I overlooked it. One thing I did notice, is my ESR was 38. From what I've read for my age, that should be 30 or under, but the results state "normal". From what I've read that could just mean inflammation or infection which we already know something is going on with the fever/chills/ear issues. I guess 38 is not extremely high, but just not sure why the results would call it normal when every single thing I have read states under 30 for my age (over 50). Makes me wonder what else they say is normal that is actually not.

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Mon Sep 28, 2020 9:29 am

heya :D i completely understand financial constraints!
i wonder if simply taking a break from that high calcium (relative to mag) supplement might help a little, without spending one more penny on any other product until you are in a better position to do so.

re discontinuing b12, i was interested to see some research recently, describing how much more effective oral b12 can be compared to shots. if a little sublingual b12 and no shots would save you any cash, it could be an approach to consider.

re ESR and any other test, 'normal' just means normal distribution of the data, ie the bell curve. health and disease are both represented under that curve. that is why an ESR result can be both normal and problematic at 38.

i can't readily find a magnesium intervention looking at effect on ESR but this study does note an inverse correlation between magnesium status and ESR, ie higher mag seen with lower ESR:
https://www.hindawi.com/journals/jobe/2011/273105/

if you knew your serum mag level as well as your ESR, you could decide whether magnesium might need work, and see if an increase helped lower ESR over time.

magnesium and zinc are not going to be status quo tests but i really feel those would both be worth having done. both could be affecting your day to day experience, and for both a 'normal' result isn't necessarily good enough.

across the board, marginal deficiency symptoms can and do occur within the 'normal' range. ideally, results need to be in the healthiest part of that 'normal' range.

if nobody ever gets around to asking for those tests to be run, or can't be bothered to dig deeper when a result is 'normal', patients can end up with marginal deficiency symptoms for years without ever triggering a red flag from the lab. what could have been actionable results, instead end up in the subclinical 'it's all in your head' roundfile.

recently a connection of mine had zinc tested and in that case, the lab didn't even have a max and min set up for zinc at all. no matter how high or low that person's level had been, the lab wouldn't have raised any red flag to the doctor's attention. luckily in that case the doctor considered the result an issue, and i had a target level in mind. we've been working hard on it since with really positive results so far.

hopefully all that makes sense, and encourages you to push for a couple of unusual tests!!
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katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Oct 01, 2020 2:08 pm

Hey, all! I went to the dr. Monday, but had to see the ARNP. I don't really like her, but just wanted some relief with my ears and other symptoms until I got to the ENT today. I told her about the possibility of MS even though MRI is clear and she immediately said you don't fit the age range. Then she came over and waved an ink pen back in forth in front on my eyes and said if you had MS, your eyes would be all over the place. Not being ugly, but that b needs to retire. I absolutely may not have MS, but anyone at ANY age can get it and not ALL people with it have eye issues. I know more about it than she does IMO. Anyway, she told me I had a retracted eardrum. She also told me to use flonase and zyrtec which I do every day anyway and there's been no change. Basically, she did nothing for me. She also kept saying everything wrong with me was to do with my alcohol consumption. She was very nice and tried to act like she cared and basically kept saying that if my mental status wasn't good that my physical status wouldn't be either. I've never left my dr's office in tears before until that day. Fast forward to today, I had my ultrasound (due to high ferritin serum on blood work a few weeks ago). It hasn't been read by the radiologist yet, but the person who did it has worked there for 20 years and said she didn't see anything wrong with any organs and my liver looked fine which was a relief. Then I went to the ENT. She thinks I have vestibular migraines and BPPV. I have to go back in 3 weeks for more testing. I do NOT have a retracted eardrum. She asked a lot of questions and one of them was if I had ever been tested for MS (based on my answers). She also said I should go to a neurologist which I told her I had been referred, but am waiting for them to call me to make an appointment. Maybe I finally will get somewhere and get some answers. At least it looks like I will get a diagnosis for the new stuff going on. Jimmy, I thought about one thing today. I have a flexible spending account. It is dwindling down with all these new specialist appointments ($75 each time), but I think the FSA will pay for certain vitamins so I will check into seeing if I can get the magnesium you suggested. I also read that would be good if I have these 2 conditions.

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Oct 01, 2020 2:12 pm

Jimmy, I forgot to mention that when I went to the dr Monday, the ARNP told me that Labcorp forgot to take some bloodwork that was ordered and I asked if she could do magnesium. She said that was kind of weird, but she ordered it and I had it done today. I couldn't remember the other one you asked about (zinc) at the time, so maybe we can do that next time.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Thu Oct 01, 2020 4:31 pm

Hi,
I'm not really sure what an ANRP is. It's not a term I'm familiar with. Presumably it's some sort of nurse?
The best advice was from the ENT. If you can't get a referral from your doctor, ask the ENT to give you one. That takes you into a different pool of doctors than your GP's network.
Regards,

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Oct 01, 2020 6:12 pm

Scott, yes it's a nurse practitioner which is a step above a nurse, but in this case she doesn't know her a** from a hole in the ground. LOL

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Fri Oct 02, 2020 6:37 am

hi again :) more progress! a couple of thoughts:
She also kept saying everything wrong with me was to do with my alcohol consumption.
it would be great to have some evidence of alcohol-induced nutrient depletion if applicable in your case, so that at very least in the best case scenario you could rule those out and get a better sense of what any other underlying issues might be. the magnesium result will be one informative piece of the puzzle.
She was very nice and tried to act like she cared and basically kept saying that if my mental status wasn't good that my physical status wouldn't be either.
the evidence seems to suggest that that one ^ goes both ways...ie physical condition and nutritional status can affect mental health and vice versa
I had my ultrasound (due to high ferritin serum on blood work a few weeks ago). It hasn't been read by the radiologist yet, but the person who did it has worked there for 20 years and said she didn't see anything wrong with any organs and my liver looked fine which was a relief.
sounds like good news, although i don't know much about any pros and cons of conventional liver testing. i think i posted some interesting related research earlier, but will need to review.
Jimmy, I thought about one thing today. I have a flexible spending account. It is dwindling down with all these new specialist appointments ($75 each time), but I think the FSA will pay for certain vitamins so I will check into seeing if I can get the magnesium you suggested. I also read that would be good if I have these 2 conditions.
that sounds like a good temporary option. hopefully even just easing off on the higher calcium product could be beneficial without going to immediate extra expense.
reviewing some older posts:
hi again :) i'm circling back around to your post of aug 22 here, re
I've only been taking the magnesium for about 2 1/2 weeks. Spring Valley brand: calcium, magnesium & zinc + vit d3 bone & muscle health. Serving size: 3 pills a day. Per serving: D3: 15 mcg, 600 iu. Calcium: 1000 mcg. magnesium: 400 mg. zinc: 15 mg.
i have already voiced some thoughts on that product in general, and i and wonder if you might consider a break from it,
quick question - have you discontinued, or are you still using
Spring Valley brand: calcium, magnesium & zinc + vit d3 bone & muscle health. Serving size: 3 pills a day. Per serving: D3: 15 mcg, 600 iu. Calcium: 1000 mcg. magnesium: 400 mg. zinc: 15 mg.
?
wouldn't be the first time someone was taking something they thought would help, which was instead contributing to health problems
Hi, Jimmy! I am still using the vitamins that I had.
to be more clear: i hope you will consider taking a break from the high cal:mag ratio product until you have a chance to balance out the regimen a little
Jimmy, I forgot to mention that when I went to the dr Monday, the ARNP told me that Labcorp forgot to take some bloodwork that was ordered and I asked if she could do magnesium. She said that was kind of weird, but she ordered it and I had it done today.
it's sad that for a person so quick to blame everything on alcohol, that she doesn't seem to recognize magnesium depletion as a potential consequence. although research on alcohol induced nutrient depletion in particular seems to suggest she may not be alone in the oversight:

A prospective evaluation of thiamine and magnesium status in relation to clinicopathological characteristics and 1-year mortality in patients with alcohol withdrawal syndrome (2019)
https://link.springer.com/article/10.11 ... 19-02141-w
"... Conclusion
The prevalence of low circulating thiamine concentrations were rare [jl edit: ie all the physicians knew to watch for thiamin depletion]and it was regularly prescribed in patients with AWS. In contrast, low serum magnesium concentrations were common and not prescribed. Low serum magnesium was associated more severe AWS and increased 1-year mortality."
I couldn't remember the other one you asked about (zinc) at the time, so maybe we can do that next time.
that would be fantastic, we can chat more about specifics when finances allow.

the importance of vitamin B1 aka thiamine noted above reminds me of an older nutritional regimen for ms which involves a wide array of vitamins and minerals, and places a strong emphasis on thiamine. i was malnourished/misnourished when diagnosed and that older regimen did me a LOT of good in a matter of days if not hours.
recalling some earlier input,
b50 complex (many of the b-vits are depleted by alcohol)
quality multi
magnesium glycinate (mag is vulnerable to depletion by d3 and by alcohol)
high DHA omega 3 (fish oil) could be expected to help out the lipid profile
zinc (will help bring ferritin in line and is also depleted via alcohol use -not to mention smoking)
i recall the ms protocol involving more like 100 mg of thiamin 3 to 4 times per day. to edge in that direction, one of many products out there like this one could be a good start, when finances allow. https://newrootsherbal.com/product/id/0892

for contrast, note the thiamine regimen recommended in this alcohol-specific ICU scenario:

Unpeeling the Evidence for the Banana Bag: Evidence-Based Recommendations for the Management of Alcohol-Associated Vitamin and Electrolyte Deficiencies in the ICU (2016)
https://journals.lww.com/ccmjournal/Abs ... g_.14.aspx

"...Based on the published literature, for patients with a chronic alcohol use disorder admitted to the ICU with symptoms that may mimic or mask Wernicke’s encephalopathy, we suggest abandoning the banana bag and utilizing the following formula for routine supplementation during the first day of admission: 200–500 mg IV thiamine every 8 hours, 64 mg/kg magnesium sulfate (approximately 4–5 g for most adult patients), and 400–1,000 μg IV folate. If alcoholic ketoacidosis is suspected, dextrose-containing fluids are recommended over normal saline."

wow! anyway, that's enough for now. hope there's some news you can use. next time i'll get into the bits and pieces i know about the consequences of loading just one element of a vitamin complex long term.

back later, hope you have an okay day!
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katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Fri Oct 02, 2020 7:00 am

That is a lot of info, Jimmy. I read it all, but want to go back and check on each thing individually. I appreciate you taking the time to write all that. I just call a call from the neurologist, so I got an appointment for October 27th, so hopefully more progress will be made.

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Re: No one knows what's wrong with me.

Post by jimmylegs » Fri Oct 02, 2020 7:58 am

yeah, that was a long one lol :S nice bit of news re your appointment, for sure.

i look forward to seeing your magnesium result, if you can share when it comes through :)
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katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Oct 05, 2020 9:31 am

@jimmylegs Well, low and behold I just got my bloodwork results and my magnesium is high (just a little over normal). 2.4 MG/DL. I guess I need to quit taking that supplement all together. I haven't gotten a call from the dr. yet, but will let you know what she says. I am still waiting on the ultrasound results also. After doing a lot of research, I really believe the ENT was correct with thinking it is vestibular migraines. I don't think that has anything to do with the numbness I've had in my arms and legs for the past 8 years, but the tingling that just started is a symptom of VM. As far as the BPPV goes, that is kind of the same things as the VM. I am thinking I will change GP's as soon as I get my ultrasound results. I am just tired of going to tons of dr's and spending tons of money and never getting any answers.

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Oct 05, 2020 9:41 am

I don't know how I missed this, but it looks like my bun/creatinine was high: 25 and my glucose was high: 126 mg/dl. The bun/creatinine has been high before and they just tell me I am dehydrated. I don't drink a lot of water, but I drink diet dr pepper ALL day long, so don't know how I could be dehydrated.

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Re: No one knows what's wrong with me.

Post by jimmylegs » Mon Oct 05, 2020 10:21 am

aha results are in! okay that converts to 0.98 mmol/l which is not above normal per se (although it may be from your local lab's perspective), but is definitely in the upper part of the normal range, and therefore less likely to be associated with deficiency symptoms even though the level is normal. good news!

re stopping the supplement, to be clear, i had hoped you would consider taking a break from that particular product because the calcium amount looks too high relative to the magnesium.

when you can, if you can increase plain magnesium in your regimen to get your total supplemental cal:mag intake ratio back below 2 (it is currently 2.5 if memory serves), that would be more in line with recommendations in the literature.

until you can afford to blend it with plain magnesium, a break from your current product could be a good idea.

either or both approaches could be worth trying out, see if you get improvements in any of your symptoms.

great to hear that you might have at least part of the answer to your investigation thanks to the ENT. :) i don't have any nutritional insights at my fingertips for VM, but will have a look and see what if anything i can find.
in the meantime: https://onlinelibrary.wiley.com/doi/abs ... lary.28546

later i will circle back to the b vitamins but for now, yay re good magnesium status and still having a potential action item to work with :D
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Re: No one knows what's wrong with me.

Post by jimmylegs » Mon Oct 05, 2020 10:50 am

Recent Advances in the Understanding of Vestibular Migraine (2016)
https://www.hindawi.com/journals/bn/2016/1801845/

lots of info there, and one paragraph on Nonpharmacological treatment options for VM notes:

"...One retrospective study showed that 14% of 38 patients enrolled reported improvement in symptoms after caffeine cessation [43]"

posibly relevant? :

https://www.caffeineinformer.com/caffei ... -dr-pepper
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Re: No one knows what's wrong with me.

Post by NHE » Mon Oct 05, 2020 9:37 pm

katybarthedoor wrote:
Mon Oct 05, 2020 9:41 am
I don't know how I missed this, but it looks like my bun/creatinine was high: 25 and my glucose was high: 126 mg/dl.
Was that glucose test result done after fasting?

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Sat Oct 17, 2020 10:28 pm

@NHE Sorry, I haven't been around for a while. I've been dealing with all this craziness. Yes, I had to fast for the bloodwork. A lot has happened since my last post. I went to an ENT who thought I might have Vestibular Migraines and Benign Paroxysmal Positional Vertigo. I then went to a neurologist who confirmed it. I go back to the ENT Friday for them to do the Epley maneuver on me which may help some with the dizziness. None of this has anything to do with MS, but the neurologist appt. ran past their hours of business so I wasn't able to address all my issues. 9 years with numb legs and no one can diagnose me, but got a diagnosis in one visit from a condition that can be hard to diagnose from something that started a couple of months ago. I really like this doctor and hope he can help me. There is no cure for it, but sometimes medication can help and I've already started taking the meds, but not long enough to see any kind of improvement yet. The vestibular migraines is way worse than the name makes it sound. So many symptoms and it is debilitating. I've missed so much work and been in bed a lot. Just like MS, there can be remissions. My job had been pretty understanding so far, but if I don't get any better, I am sure they will have no choice except to get rid of me. I had no time on the books so my paycheck has suffered quite a bit. At least I have one diagnosis and they can try different meds to treat me for it. I have done lots of research and it seems that the majority of these people try tons of medications that never work so they have years of constant vertigo, migraines, etc. that take over their life and make every day small tasks seem impossible. I work on a computer all day and the words bounce around then I get nauseous and I have to sit in the dark because I have light sensitivity. I am just a mess. Hopefully, the meds will work.

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