Is MS still a possibility? Desperate...

[Sarah9]

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[jimmylegs]

hi and welcome sarah
quick question, re
"Blood checked every time: completely fine."
do you have your records and could you elaborate re which particular blood tests have been used to date, to make that assessment?

[Sarah9]

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[Scott1]

Hi Sarah,
The neurologist is basically saying there is not sufficient evidence on the MRI to make an MS diagnosis. You are absolutely right that a lumber puncture can be done. It may show bands of protein that indicate MS or it may not.
Your problem is the neurologist is a one trick pony so he has passed you back to your doctor. Then its a question of how good at complex diagnosis is your doctor. I think you do deserve a lot more attention but you may need to seek an alternative doctor if you keep being dismissed. Really,the neurologist should have had his own referral network and not have sent you back to a GP.
If you don't feel like your getting anywhere, start with the bladder problem and find a urologist. Tell that specialist all of your symptoms, not just the bladder issues.Try to get into a different circle of doctors than the one your GP works with.
Do you ever have fluctuating blood pressure?

Regards,

[jimmylegs]

Dear Jimmylegs,

Thank you so much for your quick response!

I have found some details on my bloodwork during the years. I do have a side note about de vit. D since I have been struggling for years to get this up. I have been taking supplements during the winter months and always fluctuate between 30 and 50.
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If you are missing any data please let me know!
Oh and second side note, I'm originally from the Netherlands so if you need any translation for the data please also let me know

FABULOUS info, Sarah! so far, google translate is helping me confirm suspicions re translations, and teaching me new things where the translation is less intuitive from my brain's perspective

sodium and potassium look like a match for healthy controls. i don't often see these specifically implicated in MS.
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calcium looks normal.
magnesium is technically 'normal' but not what i'd characterize as 'optimal'. i would consider that one suspect with respect to recalcitrant low vitamin D status. more on that one below.
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re ijzer, presumably serum iron, that looks fine. that said, i more often see 'serum ferritin', and could provide better comment on that.
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B12 at 390 and then 475 is pretty decent; i consider 370 a lower cutoff (the evidence base for that cutoff is on the weak side, but i use it anyway!)
i need to circle back to B1 and B6 later; they are important but i have to take a closer look at the research before i respond.
D3 47 nmol/l and 50 nmol/l (not sure exactly what VD3 33/L means though) - i would target 100 nmol/l as an interim a first step, and get that working before trying for anything higher. i personally aim for more like 125-150 nmol/l, but no higher than that. again, i think low magnesium intake/status could be suspect here. zinc status would be another one to consider.
hemoglobin appears to be improving over time. i've seen levels of at least 8 recommended for MS patients.
.. MCV looks fine which is consistent with your b12 level also being good.
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GLUC - is that fasting blood glucose? if so, that seems on the high side of normal and might be another reason to think about boosting magnesium status.

if you decide to work on magnesium status, there are many ways to go about it. you could consider ensuring daily recommended intakes are met for your age, gender and body size, managing any magnesium-depleting lifestyle factors, boosting intakes of a variety of healthy magnesium-dense whole foods, and/or choosing a high quality well-absorbed supplement product.

several authors have suggested changes to the way serum magnesium is interpreted at the lab. research i've seen to date suggests that people with higher normal serum magnesium levels are least likely to exhibit signs and symptoms of magnesium deficit. you could look into whether aiming for a serum level of at least 0.95 mmol/l sounds like it could be something you'd like to pursue.

as for missing data, it could be worthwhile to look at serum zinc.

for now, you could think about having a bit of a search to see what you can find linking up your various complaints with magnesium and/or zinc status. maybe some other nutrient will present itself as well! i'll do the same (i already have some idea what we'll find) and we can compare notes

[Sarah9]

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[Sarah9]

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[jimmylegs]

hi again Sarah

You might be interested to learn that my username, jimmylegs, has its origins in my own legs' past habits of twitching. At the time I thought it must have been iron, which is often implicated in restless legs syndrome. I couldn't have been more wrong. Eventually i learned that the leg twitches are one of my body's ways of telling me that my zinc status is too low. Taking iron when you already have low zinc just makes the existing zinc problem even worse! i wouldn't personally expect magnesium to do anything for my 'jimmylegs' - they are definitely a zinc-related phenomenon

re magnesium, your level is definitely lower end of normal, in the 'sick' end of the 'normal' spectrum. Though it is absolutely possible to overdo magnesium intake, you have plenty of room to improve your magnesium status without being in danger of excess. Topical options like magnesium oil and epsom salts baths are great alternatives to dietary measures and/or oral supplements. That said, you would be perfectly safe changing daily food/beverage habits and/or adding a supplement to boost magnesium levels.

applicable daily routines including any emotional or physical stresses, even exercise levels, certain medications and alcohol use can affect magnesium status. there are no limits on daily magnesium intakes from food or water; according to health canada, supplements should be limited to approximately 300 mg daily for women and 400 mg for men.

scroll down to table 2 at the link below, to find daily upper limits for supplemental magnesium
https://www.canada.ca/en/health-canada/ ... -2005.html

some authors suggest 7-10mg per kg body weight is an appropriate total daily intake, given modern high stress lifestyles. an individual would choose the higher end of that spectrum if they knew they had more lifestyle influences linked to magnesium depletion. if i were to do that, i would be aiming for 500 mg per day from all sources and i know i get 200 mg from magnesium glycinate, plus a bit more in my multi, with an extra 200 mg on days i take vitamin d3. i probably got 200-300 mg from food today, but i haven't done the math so don't know for sure.

re the vit d3 33 typo, i thought that might be what it was. Definitely something to work on!

Cofactors are crucial for optimizing d3 dose response. When needed (and *only* when needed) I have been in the habit of using a very standard medical protocol meant to boost serum d3 levels by 50 nmol/l, ie 50K IU per day for 10 days. When my general nutrition status has been poor, my dose response might be a 40 nmol/l or 50 nmol/l increase at best. When i use cofactors like magnesium and zinc, with a multivitamin for good measure, the dose response is very different. Once, I did 50K IU per day for 8 days, hoping for a roughly 40 nmol/l increase. However, at that time I had been working hard on my status for other nutrients. Instead of the expected 40nmol/l boost, my d3 level rose by well over 150 nmol/l to more than 270!

Last year, i did two sets of 50K IU per day x 10 days. At the start, I hadn't been tested in a while and even though i should have known better, my level was only around 50 nmol/l. My first round only got me to 90 nmol/l. While i was making my way to a second round of d3 and testing, I was working hard on other nutrients in general. After the second 50K IU / day for 10 days, my level was up to 166 nmol/l. I was only aiming for 125-150 nmol/l, so i backed off to what i thought would be a decent maintenance intake and at the next test it was down to just over 100 nmol/l. Next, I increased my weekly intake a little. I haven't yet had the opportunity to test the effect of my latest regimen (in combination with summer sun), because of the pandemic. Details details details!!

I will look forward to any news you might have re ferritin and zinc. If you want to chat more about ways to boost magnesium, I'm here

[jimmylegs]

possibly of interest:

• Magnesium and hearing loss
  https://scholar.google.ca/scholar?hl=en ... loss&btnG=

not saying i would suggest this exact regimen in every case, but it's an example of using combined cofactors with vit D3 to good effect:

• Role of magnesium in the pathogenesis and treatment of migraine
  https://www.tandfonline.com/doi/abs/10. ... 75.9.3.369
  "We recommend daily treatment with 400 mg of chelated magnesium, magnesium oxide or slow-release magnesium in patients with symptoms suggestive of hypomagnesemia, such as migraine headaches, premenstrual syndrome, cold extremities and leg or foot muscle cramps..."

• The role of magnesium therapy in learning and memory
  https://www.ncbi.nlm.nih.gov/books/NBK507270/

only a case study, but also possibly of interest re
"- Extreme pain on the left side of the face"

• Case Report - Novel treatment in refractory tic douloureux
  https://pubmed.ncbi.nlm.nih.gov/25204512/
  
  "...He took several medications, including baclofen (10 mg/day), carbamazepine (1,200 mg/day), and pregabalin (200 mg/day). His pain was triggered by speaking, eating, or touching. Based on a visual analog scale (VAS), the patient rated his pain as 10/10, ie, the worst pain imaginable. Written, informed consent was obtained from the patient. We administered IV magnesium sulfate 30 mg/kg over 30 minutes (the required amount was added as a 50% magnesium sulfate (Shahid Ghazi Pharmaceutical Co. 50% 50mL VIAL, Tabriz, Iran) solution to 100 mL of saline). Pain severity was recorded using a numeric VAS at baseline and at 10, 20, and 30 minutes during the infusion. The VAS score decreased from 10/10 to 2/10 before and 30 minutes after receiving the treatment course, respectively.
  
  The patient was monitored for 4 hours beginning from the time of injection. During this period, he experienced no increase in pain severity or medical complications. He was later discharged and followed up via telephone. It was suggested that his medications be tapered gradually. Within one week from discharge, carbamazepine dose decreased from 1,200 mg/daily to 600 mg/daily, and two other medications (pregabalin and baclofen) that he used prior to his admission were discontinued. He was followed up for 12 months. Within this one-year period, the frequency of his pain spells decreased from two to three times a month to one time in 6 months, with pain severity of VAS 4/10 to 5/10 on occurrence; ie, the frequency and severity of pain had decreased compared with the time he had not received magnesium sulfate. His relapsed pain course was efficiently treated by a single medication regimen: carbamazepine with a maximum dose of 800 - 1,000 mg/daily for a week maximally, which was later decreased to its previous 600 mg/daily dose...."

with that ^ limited evidence from a single individual's experience, we aren't told anything about treatment effects on the subject's serum magnesium levels during treatment or follow-up.

• Magnesium sulfate reduces formalin-induced orofacial pain in rats with normal magnesium serum levels
  https://www.sciencedirect.com/science/a ... 4017303572

interesting to see magnesium used as the single, successful treatment for an animal model of trigeminal neuraligia. i haven't dug into this ^ study's full text, to discover any more detail about the 'normal' magnesium levels described.

why you needn't worry about excess when you are starting at 0.73 mmol/l:

• Intravenous magnesium sulphate and lignocaine in management of trigeminal neuralgia
  "Hypermagnesaemia presents with headache, nausea, vomiting and diarrhoea, hypotonia and muscle weakness (serum Magnesium > 4 - 5 mmol/L). Respiratory muscle weakness and respiratory arrest occurs at serum Magnesium > 5 - 7.5 mmol/L. Hypotension, bradycardia, prolonged AV conduction, wide QRS complex and cardiac arrest occur at serum Magnesium > 10 - 12.5 mmol/L"

more about zinc here, incuding recently-published research related to interactions with D3:
viewtopic.php?p=259647#p259647

[Scott1]

Hi Sarah,
If you don't have fluctuating blood pressure that's a good thing. The reason I asked was related to your description of "bladder problems". Those issues can have different presentations.
For my own benefit, I was checking to preempt scans of the spine. When a patient has damage above T5 (a vertebrae about mid chest level) then they can have a problem with communication between a part of the brain stem (called the pons) and the nerves that unconsciously enervate your bladder. The bladder becomes spastic. That specific problem can cause pressure to build in the kidney and that shows up as high or fluctuating blood pressure . No blood pressure problem suggests you are unlikely to have any damage above T5. That's a good thing.
Bladder issues can have a cause that is not neurological. I'd still be investigating that. Hence I suggested a urologist.
Regards,