New lesion despite being PPMS or SPMS

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zen2010
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New lesion despite being PPMS or SPMS

Post by zen2010 » Thu Dec 27, 2018 8:59 am

Hi,

I went through a spinal cord MRI this morning. I didn’t expect to see anything new since I am and have always been PPMS.
I was surprised when the doctor told me a new lesion appeared on top of the spinal cord.

My balance/gait/walking status got worse.
I did many things to improve this status: I use a vertical climber on a daily basis ( + I use a neuro-stimulator device (https://www.haloneuro.com/science) + I have improved food intake etc…

And, in the end, I have a new lesion appearing and my global status got worse.
It’s very demoralizing…

I’ve decided to stop using the Halo Sport device for the moment.

I’d love to know if some of you ever had new lesions despite being PPMS or SPMS

Thks

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Re: New lesion despite being PPMS or SPMS

Post by ElliotB » Thu Dec 27, 2018 10:49 am

As you are probably aware, each case is different and progresses differently. So be thankful that you seem to be doing relatively well.

Some of the things you have begun doing (vertical climber and neuro-stimulator) you only started recently - I wouldn't give up on them just yet. Beneficial results may take some time.


"I have improved food intake etc…"

What type of diet are you following?

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Re: New lesion despite being PPMS or SPMS

Post by zen2010 » Thu Dec 27, 2018 10:56 am

ElliotB wrote: "I have improved food intake etc…"

What type of diet are you following?
Advice from Jimmylegs

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Re: New lesion despite being PPMS or SPMS

Post by jimmylegs » Thu Dec 27, 2018 11:14 am

i haven't learned much about ppms or spms but the word 'progressive' leads me to believe that a new lesion is not outside the realm of possibility.

to refresh, i searched prior discussion on diet.

august 2018: http://www.thisisms.com/forum/general-d ... ml#p254253
septermber 2018: http://www.thisisms.com/forum/general-d ... ml#p254923

definitely noted improved distribution and diversity, still with tons of room for improvement. conversation petered out after last post re seafood and dark leafy greens. would be worth comparing the above to most recent diet diary entries.

this topic motivated me to update my own dietary diversity notes posted elsewhere: http://www.thisisms.com/forum/diet-f9/t ... ml#p256133

afraid i can't comment on the devices.

could be interesting to see recent bloodwork if any. that is, if you have anything more recent than last related posts. (i note that there are new labs to be done in feb, what's on the list for those iima?)

also curious re any updates to routine drug/supplement intakes.

here's hoping balance/gait/walking improve soon.
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Re: New lesion despite being PPMS or SPMS

Post by Snoopy » Thu Dec 27, 2018 1:05 pm

zen2010 wrote: I’d love to know if some of you ever had new lesions despite being PPMS or SPMS
There is nothing uncommon for new lesions to appear and/or disappear even when a person is SP or PP. Lesions are a hallmark of this disease and lesions can happen anytime through our life with this disease. MS is a neuro-degenerative disease and getting worse is a very real possibility :sad:

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Re: New lesion despite being PPMS or SPMS

Post by zen2010 » Mon Dec 31, 2018 7:13 am

Hi JL,
jimmylegs wrote:could be interesting to see recent bloodwork if any.
Will be done in 4-5 weeks. I'll post here
jimmylegs wrote:also curious re any updates to routine drug/supplement intakes.
I stopped almost everything exept:
-D vit (UI 3900/day)
-Mg (100 mg/day)
-C Vit-liposomal (212 mg/day)
-Omega 3:500 mg/day

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Re: New lesion despite being PPMS or SPMS

Post by jimmylegs » Mon Dec 31, 2018 7:40 am

ok good info. still curious what is on the list for upcoming bloodwork :)
for whatever it might be worth, 100mg magnesium does not look like enough mag to deal with 3900 IU of d3 per day.
of the essential metals, magnesium is the most important of myelin's building blocks.
one small change to your status quo which could have value would be to take 100mg mag *with* the d3 and another 100mg mag several hours away from the other dose.
how long do you plan to wash out supplemental intake prior to next bloodwork? one week or so?
take control of your own health
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Re: New lesion despite being PPMS or SPMS

Post by zen2010 » Tue Jan 01, 2019 5:45 am

I have the feeling I made a huge mistake regarding Mg.
I went down from 400 mg to 100 mg several months ago.

I hope this is not the reason why my global status went down.
If it's the reason, then I am the stupidest man on earth.
jimmylegs wrote: how long do you plan to wash out supplemental intake prior to next bloodwork? one week or so?
I immediately increased Mg up to 200 mg * 3 times a day. (D3 at the same time than noon intake)
I'll keep taking Mg, D, C Vit and omega3 till the next blood test, then I will adjust if needed.

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Re: New lesion despite being PPMS or SPMS

Post by jimmylegs » Tue Jan 01, 2019 6:25 am

ha you're not stupid either way - this stuff is complex, multiple factors in play.

it might be easier on your system if you start with 100mg 3x/d, with the d3 at the same time as the noon intake.
on the other hand, might be fine. have you tried 600mg of your magnesium before, without any unwanted (laxative or muscle weakness) side effects?

i'm still curious if you are in the habit of a washout period with no supplements, prior to nutrient testing.

regardless, all the best of the new year :) hope your upcoming test results bring you good news, and that adding some mag to the daily mix helps you feel better.
take control of your own health
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ask for referrals to preventive health care specialists eg dietitians
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Re: New lesion despite being PPMS or SPMS

Post by zen2010 » Tue Jan 01, 2019 6:42 am

jimmylegs wrote:it might be easier on your system if you start with 100mg 3x/d, with the d3 at the same time as the noon intake.
on the other hand, might be fine.
I though I'd kick it up at 600 for 2-3 weeks, then go down to 100mg 3x/d
jimmylegs wrote:have you tried 600mg of your magnesium before, without any unwanted (laxative or muscle weakness) side effects?
Yup, no prob here
jimmylegs wrote:i'm still curious if you are in the habit of a washout period with no supplements, prior to nutrient testing.
.
No I'm not

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Re: New lesion despite being PPMS or SPMS

Post by jimmylegs » Tue Jan 01, 2019 7:15 am

ok mostly sounds good; please consider implementing a washout period so that you have a better sense of background status and aren't testing the circulating effects of yesterday's pills :)
one-week and four-week washout periods are represented in the literature evaluating magnesium status in asthma, and thrombosis in coronary artery disease, respectively.
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Re: New lesion despite being PPMS or SPMS

Post by jimmylegs » Tue Jan 08, 2019 9:38 am

friend of mine just had testing done after only a 6 day washout period. patterns and action items were definitely clear even with such a short washout.
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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Re: New lesion despite being PPMS or SPMS

Post by Kheuer » Wed Jan 09, 2019 8:57 am

Try nicotinic acid, the B3 that makes you flush.

Most people it only takes 50mg, for me it takes 1000. Klenner said 750 was usually necessary for MS persons to flush back in the 70s.

It's completely safe, in fact it is the single most effective cholesterol medication ever.

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Re: New lesion despite being PPMS or SPMS

Post by NHE » Wed Jan 09, 2019 5:20 pm

Kheuer wrote:
Wed Jan 09, 2019 8:57 am
Try nicotinic acid, the B3 that makes you flush.

Most people it only takes 50mg, for me it takes 1000. Klenner said 750 was usually necessary for MS persons to flush back in the 70s.

It's completely safe, in fact it is the single most effective cholesterol medication ever.

Long-term use of high dose niacin can cause liver injury.

https://livertox.nih.gov/Niacin.htm

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Re: New lesion despite being PPMS or SPMS

Post by jimmylegs » Thu Jan 10, 2019 4:56 am

i didn't see a specific connection made between niacin or lack thereof and new lesion dev, but fwiw:

Lipid Lowering Agents That Cause Drug-Induced Hepatotoxicity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2048990/

Niacin
Niacin, or nicotinic acid, is used primarily to increase HDL through a mechanism that is not entirely clear. A reduction in LDL is also seen ... The sustained-released (SR) preparation is easily available over-the-counter and may be used by patients seeking a perceived naturopathic solution to their high cholesterol or by patients seeking a cheaper option to treat themselves. Patients may possibly be using potentially toxic doses without the prior knowledge of their physicians. It is this unsupervised use of the SR formulation that often leads to the dose-related toxicity of niacin and should be discouraged.4,47-49 The onset of hepatotoxicity generally appears anywhere from 1 week to 48 months after the initiation of the drug and usually subsides with discontinuation.50-52 Recovery is usually seen in 1-2 months.48,50 Fulminant hepatic failure has been reported but is very rare.51,53,54 Combination therapy with statins does not increase the incidence of adverse effects of either medication.55

Almost any formulation of niacin can cause hepatotoxicity in doses that exceed 2-3 grams per day, but the sustained-release (SR) formulation is significantly more hepatotoxic.62,63 The immediate-release (IR) formulations of niacin in usual therapeutic doses almost never cause serious liver injury.64,65 The over-the-counter SR formulation of the drug is not FDA approved for the treatment of dyslipidemia but still available to patients for this purpose as a supplement or “neutraceutical”. Half of the patients that take niacin SR develop a symptomatic elevation in transaminases.49,64,66
...
the slower released SR formulation can lead to higher levels of toxic metabolites (Table 5).64,65,67 ... The rapidly-released IR formulation overwhelms the higher affinity amidation pathway and the majority is metabolized using the high-capacity conjugation pathway, leading to a much lower rate of hepatotoxicity.67 Extended-release (ER) niacin has an intermediate rate of dissolution and can be associated with both flushing and hepatotoxicity 64.

62. Capuzzi DM, Guyton JR, Morgan JM, Goldberg AC, Kreisberg RA, Brusco OA, et al. Efficacy and safety of an extended-release niacin (Niaspan): a long-term study. American Journal of Cardiology. 1998;82(12A):74U–81U.

63. Rader JI, Calvert RJ, Hathcock JN. Hepatic toxicity of unmodified and time-release preparations of niacin. American Journal of Medicine. 1992;92(1):77–81.

Adverse effects on the liver from both unmodified and time-release preparations have been recognized for many years. We reviewed the literature on the hepatic toxicity of both types of niacin preparations. Adverse reactions in six patients resulted from the exclusive use of unmodified niacin and in two patients from the exclusive use of time-release preparations. In 10 additional patients, adverse reactions developed after an abrupt change from unmodified to time-release preparations. Many of these patients were ingesting time-release niacin at doses well above the usual therapeutic doses currently recommended. Signs of liver toxicity developed in less than 7 days in four of these 10 patients. In doses that achieve equivalent reductions in serum lipids, hepatic toxicity occurred more frequently with time-release preparations than with unmodified preparations. An awareness of toxicity associated with ingestion of high doses of time-release niacin preparations is important because of their widespread availability and the potential for self-prescribed, unmonitored use.

64. Pieper JA. Overview of niacin formulations: differences in pharmacokinetics, efficacy, and safety. American Journal of Health-System Pharmacy. 2003;60(13) 2:S9–14.

65. McKenney J. Niacin for dyslipidemia: considerations in product selection. American Journal of Health-System Pharmacy. 2003;60(10):995–1005.
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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