Should I

A board to discuss the Multiple Sclerosis modifying drug Betaseron

Should I

Postby MnRdunck » Sat Nov 18, 2017 7:08 am

I have been diagnosed with MS by a neurologist who said he did so by my exams and the MRI was just proof. Another neurologist told me it wasn't. My family doctor really thinks it is at first I did not but now I am starting to believe it. I am having horrible Central Neuropathic Pain Related Headaches that take 3 days to build up 2 days at way past a 10 on the pain scale redefined it for me. and then on day 6 it is just gone. No let down from horrible I want to die to nothing. The timing was 30 days apart I also have real bad nerve pain I was on 1200mg of Neurotin now I am on 150mg of Lyrica. I am very desperate the pain is so bad and these attacks are killing me. The neurologist wants to start me on what he calls a high dose of Betaseron. I don't know if I should. The question is if this were you and you were desperate would you start it? Or would you try something else? I have another MRI on the 30th but I have to do something anything at this point before then. The neurologist had told me before the 1st MRI that I had MS based on my exams alone. And I see him monthly for the last year or so he has consistently told me that I was having an attack. He even had me come in two days in a row once and told me that it had lasted over 24 hours.
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Re: Should I

Postby NHE » Sun Nov 19, 2017 4:59 am

Hi MnRdunck,
Have you had a vitamin D test? If so, do you know the results? If your vitamin D3 level is low, then raising it can have about the same efficacy as several of the CRAB drugs.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.

Note: 110 nmol/L = 44.1 ng/mL. Divide by 2.496 to convert nmol/L to ng/mL.
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Re: Should I

Postby jimmylegs » Sun Nov 19, 2017 12:52 pm

interesting point, NHE - lil OT, but made me go refresh my memory on the contribution magnesium can potentially make to a 30 nmol/l serum d3 boost.

answer: per this study, subjects with similar d3 intakes, subjects with low/mid normal (avg .82 mmol/l) serum mag had serum d3 levels averaging 14.4 nmol/l higher than subjects with low normal serum mag (avg .76 mmol/l).

*if* we could assume a straight line relationship (can't though), that would suggest that individuals with similar d3 intakes as the above, but with serum mag at just 0.95 mmol/l (which i consider a minimum), would have serum d3 levels 31 nmol/l higher again, than those with serum mag at .82 mmol/l

i'd love to see more research along these lines. i really want to know if taking mag from low to mid normal can crank serum d3 up by 45 nmol/l all by itself.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Should I

Postby MnRdunck » Mon Nov 20, 2017 6:05 am

Firstly I am grateful for all your input I know I am going to sound angry and I apologize it is kind of my way of dealing with what I now believe to be facts. And what it means to the rest of my life. So I have been to the National MS Society website and here is what I found:

"Cerebrospinal fluid (CSF)
An abnormal immune response in CSF is found in a number of other diseases, so the test is not specific for MS;
Conversely, some 5-10 percent of patients with MS never show these CSF abnormalities.
Therefore, CSF analysis by itself cannot confirm or rule out a diagnosis of MS. It must be part of the total clinical picture that takes into account the findings of the person’s history and neurologic exam as well other diagnostic procedures."


"What is an MS flare up like?
An exacerbation of MS (also known as a relapse, attack or flare-up) causes new symptoms or the worsening of old symptoms. .. For example, the exacerbation might be an episode of optic neuritis (caused by inflammation of the optic nerve that impairs vision), or problems with balance or severe fatigue"

Well I think that I had both. Brain Pain is something that I never experienced before in my life and secondly as I have said it amplified my chronic pain. So I think that definition is met.

"How long do symptoms of multiple sclerosis last?
People with relapsing-remitting MS have flare-ups followed by symptom-free periods called remissions. To be a true relapse, the symptom must start at least 30 days after your last flare-up. And the symptom should stick around for at least 24 hours"

30 days mine were on October 9TH & November 8TH then it says they should last 24 hours first time was 5 days, second they managed to break on day 3. At this point knowing now why steroids are used I think it was that and not the toradol that helped me. So I think that I meet that too. Onwards:

2010 Revised McDonald Criteria

Clinical Presentation
* 2 or more attacks (relapses)
* 2 or more objective clinical lesions
Additional Data Needed
None; clinical evidence will suffice (additional evidence desirable but must be consistent with MS)


Well I think that that is met 2 attacks, I think I had those but if we think we need more:

Clinical Presentation
* 2 or more attacks
* 1 objective clinical lesion
Additional Data Needed
Dissemination in space, demonstrated by:
* MRI
* or a positive (cerebrospinal fluid) CSF and 2 or more MRI lesions consistent with MS
* or further clinical attack involving different site



I believe I had two attacks and I know I have more than 2 lesions. I know it says And a positive CSF but as already stated up to 10% with MS will not show on the CSF testing. I am really not thinking magnesium is at play here. Again the whole thing has me upset I do not want to have something wrong with me but this is where all my answers are pointing. I apologize for my demeanor I am upset at the health care professionals who I have been around and the situation.
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Re: Should I

Postby NHE » Tue Nov 21, 2017 1:44 am

MnRdunck wrote:I am really not thinking magnesium is at play here.


I think Jimmylegs was just illustrating that having low levels of magnesium can make it more difficult to raise 25,OH-Vitamin D levels.
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Re: Should I

Postby jimmylegs » Tue Nov 21, 2017 11:04 am

true, NHE that was the main point.

m, nobody is challenging the diagnostic picture. it's truly not an either-or situation.
if at some future time you're ready to acknowledge the nutritional realities associated with an msdx, the info will still be there.

for starters:

......Concentration of magnesium in the serum and the ability status of patients with relapsing-remitting multiple sclerosis.
......https://www.cabdirect.org/cabdirect/abs ... 0173157407
......The results of our study suggest that an abnormal concentration of Mg in the serum of MS patients should be recognized and corrected, as this may improve the health status of people with MS.

......Comparison of serum Concentration of Se, Pb, Mg, Cu, Zn, between MS patients and healthy controls
......https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5053457/
......Blood level of Mg was significantly lower in MS patients. But it should be noted that even with the low level of serum magnesium in MS patients, this value is still in the normal range.

......Assessment of serum magnesium, copper, and zinc levels in multiple sclerosis (MS) patients
......http://ijpbs.mazums.ac.ir/browse.php?a_ ... d=1&sw=Art
......We found that serum level of magnesium, copper, and zinc is significantly decreased in patients inflicted with MS. This is shown in some other studies and may result in ... supplemental use of trace elements for MS patients to either decrease symptoms or complications.

......Magnesium concentration in brains from multiple sclerosis patients
......http://onlinelibrary.wiley.com/doi/10.1 ... 965.x/full
......The average Mg content in the CNS tissues, as well as visceral organs except for spleen, of MS patients showed a significantly lower value than that seen in control cases. The most marked reduction of Mg content was observed in CNS white matter including demyelinated plaques of MS samples.

......Experimental and clinical studies on dysregulation of magnesium metabolism and the aetiopathogenesis of multiple sclerosis.
......http://europepmc.org/abstract/med/1296766
......Magnesium interacts with other minerals and/or metals such as calcium, zinc and aluminium in biological systems, affecting the immune system and influencing the content of these elements in CNS tissues. Because of these interactions, a magnesium deficit could also be a risk factor in the aetiology of MS.


interferon beta, interestingly, is among the less intuitive options for raising serum vitamin E levels, another nutritional issue for ms patients.

......Nonenzymatic antioxidants of blood in multiple sclerosis
......https://link.springer.com/article/10.10 ... 4150050399
......β-Interferon increased plasma α-tocopherol levels (P < 0.001) but not the lipid corrected α-tocopherol value.


further, supplementing vit E *while* taking interferon beta is also beneficial for pwms:

......Alpha-tocopherol and MRI Outcomes in Multiple Sclerosis – Association and Prediction
......http://journals.plos.org/plosone/articl ... ne.0054417
......During treatment with IFNB, increasing serum concentrations of alpha-tocopherol were associated with reduced odds for simultaneous and subsequent MRI disease activity in RRMS patients.


but, all this can wait given that you are not inclined towards this part of the ms learning curve at present.

for the meantime, back to betaseron.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Should I

Postby MnRdunck » Wed Nov 22, 2017 7:33 pm

Sorry I am just confused/scared at this point not really sure which way is up anymore. And I am not understanding the studies that you are referencing. What I read says that magnesium is low with people who have MS but in the normal range? So is the normal range not a good place to be? I am not sure what my D3 level is as it has not been tested in years. It used to be but always came back at the absolute bottom of the scale and I was prescribed it. After a while it just stopped being checked. Mostly because the doctor who was originally interested has been replaced. I will ask my doctor to check the D levels on my next visit. He draws blood at the office. On a different note I have noticed that my thinking is worse as the day progresses.
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Re: Should I

Postby jimmylegs » Wed Nov 22, 2017 7:56 pm

no need to apologize!! re magnesium EXACTLY - the normal range includes all kinds of sick ppl. sort of like how the normal range for IQ includes both your einsteins and your gumps. is just a bs piece of terminology that trips up all kinds of people, including health care professionals who should know better.

prescribing d3 on its own without mineral cofactors, especially mag, also irresponsible. science is only just getting around to this realization, and practice always lags behind the science.

given that mag can boost d3 on its own just by helping your body increase circulating d3 levels, it's really in ppls best interests to check out and optimize serum mag. after you do that, you can expect dose response to improve as well. i'm a poster child for that - my serum response to a dose of d3 is more than three times better than it was before i started working hard on nutrition in general.

i hope when you get to the doc that you will ask for serum magnesium as well as serum d3. you can perhaps take a copy of all those abstracts in with you to make the case for having it done. some ppl say serum magnesium is not a useful test. that is counterproductive BS of the most infuriating kind. it's only not useful if you shrug and throw up your hands when a low 'normal' result comes back. if you know better than to trust the 'normal' range, you will have actionable info to work with. and a great piece of baseline data for comparison purposes later on.

there are a few other valuable tests for ms patients if you're interested in taking a list to the doc ;)

i will probably move this over to your other topic since we are really off the betaseron track now!! :lol:
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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