Hello

[Zyklon]

Hi @Jimmylegs,

Ten days ago I had my annual MRI checks and blood tests. Blood tests were all good. Only high cholesterol.

Well, I am no longer NEDA and it is now official that I am MS. A new lesion in T10 vertebrae and some in the brain. Doc recommends starting Mavenclad or Ocrevus.

I am all good, with no symptoms or anything else. I have not yet decided to start another DMT or stay drug-free. I am closer to Mavenclad and save Ocrevus for later. Or maybe I go drug-free with 6 months checks.

The journey never disappoints

[jimmylegs]

hi, good to hear from you - even though it's not good NEDA news!
iima, which lab tests were on your list this time, besides cholesterol?
really good to hear that you're at least asymptomatic.
also good that there wasn't something missed, that's been going on behind the scenes.
it is indeed a journey! i haven't looked at mavenclad in any detail. not recently, at least.
my own neuro is all for ocrevus, but supports my current little experiment - which is still a work in progress.
i wish us both the best luck with next steps!

[Zyklon]

Ferritin 210 µg/L ( Yeeeeeeeey )
D3 43,6 µg/L
Zinc 988 µg/L
Sodium 139 mmol/L
LDL cholesterol 161 mg/dL ***
HDL cholesterol 39 mg/dL
Triglycerides 365 mg/dL *** (Ugly, more exercise and better diet on the way)
CRP < 2 mg/L
B12 546 ng/L
Magnesium 2,23 mg/dL
Calcium 9.9 mg/dL

I guess I am relapsing now or my brain is having fun with me. Weird feelings on my face, a mild headache, somewhat using the wrong words, and worse short-term memory. Even if this is a true relapse, it is manageable without steroids.

Maybe you heard that Turkey is hit by 2 devastating earthquakes. My wife has some physiological problems. I have learned that my NEDA is broken. Feeling crap now.

Tomorrow I have 2 appointments with MS experts. I will discuss my risk assessment with them. I have a feeling that staying drug-free is not an option for me. My docs were right about the diagnosis even though it lacked dissemination in time criteria. Rebif gave me 6 years of time which I really appreciate. So it was the right decision.

Ocrevus seems like the next step for me after Mavenclad. No doubt that it is a good DMD. I am more towards using Mavenclad than Ocrevus. My 3 reasons:

Mavenclad is not yet associated with PML risk
Fewer side-effects as people shares
Protection is good

Cons:

I am aware of the increased cancer risk.

I have no idea what the docs will say tomorrow. The one thing that I am almost sure about is this thread will be alive

Tomorrow I will share the expert's opinions.

(A very good video about Mavenclad)

[NHE]

Tomorrow I have 2 appointments with MS experts. I will discuss my risk assessment with them. I have a feeling that staying drug-free is not an option for me. My docs were right about the diagnosis even though it lacked dissemination in time criteria. Rebif gave me 6 years of time which I really appreciate. So it was the right decision.

Sometimes an extended period of NEDA is the natural course of the disease. For example, I had my first symptoms in 1991. I had numbness in my right arm that went from my shoulder down to my thumb and forefinger. I saw a neurologist, but didn't have an MRI. I went undiagnosed and symptom free for 8 years. Then in 1999, I had a second attack. I had all the standard MS tests and was diagnosed. I was drug free for those 8 years and also symptom free. For me, the 8 years of NEDA was just the natural course of the disease.

[jimmylegs]

oh wow, no fun @zyklon. after dx, i managed 12 yrs without relapses myself. it's been a new learning curve since 2018, though!

i certainly did hear about the earthquakes. early on the 6th EST, there had been a mild one 100kms away that rattled my windows here at 615am. i checked for any related news online. that was the first i saw about the terrible quakes in Turkey hours earlier :'(

thank you for sharing your latest bloodwork results.

no more cracks about 'iron man', i guess! looks like that inflammation has settled down pretty well. my docs are pushing for me to increase my ferritin to 100 ug/L.

your d3 and zinc do look pretty good.
Still, if you're interested i would recommend pushing up to 50 ug/L for D3.
re zinc, was that a serum or plasma result? either way, it could be smart to push that one closer to 20 (in the high 18s would be a reasonable start). if you do push harder with zinc, you could expect it to help keep your ferritin in line, too.

for the triglycerides, the diet and exercise plan sounds very smart!
for another possible supporting measure, i wonder do you have any b-complex in your current regimen?
if not, adding some into the mix for a while could help - you may already know all about the research on niacin/niacinamide as an alternative to statin drugs.

recently for me, time has made clear that it's time to get beyond essential nutrients. i've been looking into the safest hormone options. Testosterone is among my current prescriptions, and may interest you too:

Low testosterone is associated with disability in men with multiple sclerosis
https://journals.sagepub.com/doi/abs/10 ... lCode=msja
"... Our analysis included 96 men with a mean age of 40 years, EDSS of 1.1 and disease duration of 4.6 years. Of these men, 39% were hypogonadal (total testosterone < 288 ng/dL); ... negative age-adjusted correlation between total testosterone and EDSS (p = 0.044). ... low testosterone levels may be associated with worse clinical outcomes. A potential neuroprotective role for testosterone warrants further investigation."

higher zinc by itself could potentially help increase testosterone levels, if low.

for me, adding T is just a cream in a pump-dispenser that i apply to my skin each morning. now that i've seen that 288 ng/dl number, i'll have to go see how my results compare

for future, i definitely still need to spend some time looking into ocrevus. if possible, i'd like to be more thoroughly convinced by the literature before taking that plunge!

[Zyklon]

Waiting is over!!!

Both docs said Mavenclad and Ocrevus are unnecessarily strong for my current condition. Their reasons are:

I am in good condition
Some new small lesions in my brain and a spinal lesion are not much to worry about
They don't know if new lesions did happen when I was on Rebif or not which creates a chance for a less strong DMT

Aaaaand the winner is Aubagio for me with MRI checks every six months. I have had enough injections and some of my injection areas are still recovering or permanently hard. Aubagio is an immuno-modulator just like Rebif. I will not be much vulnerable to infections. I expect some hair loss and nausea, maybe some liver enzyme increase. I will share my experience.

They say if I relapse or have new lesions or my EDSS changes, I will use a stronger DMT. I wish it works for some years.

@jimmylegs I am no more iron man lol. I have increased D3 to 6000 IU from 5000. 200mg x 2 magnesium citrate, 1000 mcg B12, 15 mg zinc picolinate, 100 mcg selenium, 5000 mcg biotin. I will add a good multivitamin to the mix. All results are serum.

I just need more exercise for cholesterol and testosterone. Nowadays I do pilates with a specialist. Soon I will start going to GYM again.

@NHE my first attack was pretty hard. Honestly, I did not expect 6 years of NEDA for me.

I almost did not share anything about my private life. The last 3 years were a rollercoaster. I am imprisoned for 2 days, had lots of legal action with my ex-wife, divorced and married again, and closed the cafe that we run together with my wife (f covid). So plenty of stressful events.

I am not down, enjoying life...

[jimmylegs]

ok, good news re some time before m or o. i don't know anything about a, other than that one pill a day doesn't sound too bad. i have no idea about costs. i wonder what the mechanisms are driving those side effects? tbd.

yay, iron man no more re D3, when did you increase from 5000 to 6000IU/d?

mag looks good; i remember glycinate wasn't viable for you.

if you could double the zinc intake, that might be helpful.

I'm personally in a pitched battle with my copper zinc ratio right now (mine is 1.6; compare below) and am on 155mg/d mixed zinc bisglycinate and picolinate until my copper behaves itself.

if you could ever add serum copper to your test list, might be a good one to watch.

Dietary habits; concentration of copper, zinc, and Cu-to-Zn ratio in serum and ability status of patients with relapsing-remitting multiple sclerosis
https://www.sciencedirect.com/science/a ... 071730059X

"... Results
The concentration of Zn was significantly lower in the serum of individuals with MS (0.776 ± 0.195 mg/L) than in the control group (0.992 ± 0.315 mg/L). The ratio of Cu to Zn was higher in the examined patients (1.347 ± 0.806) than in the healthy volunteers (1.012 ± 0.458). Lower ability status (P < 0.05) was revealed in patients with an abnormal ratio of Cu to Zn, particularly, in cerebellar function, pyramidal tracts, and emotional conditions. Selected dietary habits have a significant influence on Cu and Zn concentration in the serum of patients with MS.

Conclusions
Lower serum concentrations of Zn and higher ratio of Cu to Zn in patients with MS can suggest a relationship between MS and oxidative stress. Products that are a source of Zn should be included in the diet, which can improve the clinical condition of people with MS."

(and don't overdo otherwise healthy foods that deplete zinc, but we already know that )

i'm working on getting selenium numbers, but that's still work in progress!
i haven't paid much if any attention to biotin yet. maybe some day.

i hadn't realized about exercise and testosterone; interesting! just reading now...:

Endogenous transient doping: physical exercise acutely increases testosterone levels—results from a meta-analysis
https://link.springer.com/article/10.10 ... 20-01251-3

bring on the gym!!

I am so glad your EDSS went from 6+ to 0/0.5 since you first joined, and that you had those NEDA years. amazing.

i do remember reading about some of the ups and downs, the marriage being over, the transition from your earlier work to coffee, i think you had a blog for a while, but i certainly never saw anything about being behind bars - other than a coffee bar. maybe! was that part of the legal action? what happened?! glad things are better these days!!

it's your current wife that has some health challenges, yes? i hope she is also fighting a good fight

[Zyklon]

I increased D3 right after I got the news.

There will be elections in May. I have been thinking about going abroad for quite a while. The next bar I will see is going to be a proper one

Too much drama in the forums lol. Ex-wives can be a pita. Lesson learned...

I can't wait for the GYM.

[jimmylegs]

lol have fun! careful with the proper bars selling zinc-depleting elixirs in abundance!

[Zyklon]

I have that infrared heater feeling on my face which is annoying. Going on and off.

[jimmylegs]

i can relate.

of possible interest:

https://www.healthline.com/health/mens- ... lashes-men

Potential causes of hot flashes in men
...men typically experience about a 1 percent drop in testosterone every year after 30. This is considered a healthy and steady decline.

What do hot flashes in men feel like?
Many people describe hot flashes as a warm, flushing sensation that sweeps over the face, chest, and upper body. Symptoms often come on within seconds and may cause perspiration or skin redness....

fwiw, when it comes to T levels my highest treatment result to date has been 2.2 nmol/l which is 63.4 ng/dL. nowhere close to 288 ng/dL!!!

[Zyklon]

I cant sleep because of hynip jerks. No way all these are psychological...

[jimmylegs]

ugh i don't know anything about what i presume are hypnic jerks.
i think the closest thing i experience is myoclonus. the origin of my username got rid of it for years, but it's kind of back.
oh look, there's hypnic in the list of myoclonus types. makes sense

https://www.ninds.nih.gov/health-inform ... /myoclonus
...Studies suggest that the following locations in the brain are involved in myoclonus:
Cerebral cortex, the most common origin for myoclonus
Brain stem, close to structures that are responsible for the startle response, which is an automatic reaction to an unexpected stimulus involving rapid muscle contraction
...
A doctor's first consideration in treating myoclonus is reversing or treating any underlying cause or the origin of the myoclonus. However, many cases require symptomatic treatment if the myoclonus is disabling.

doesn't sound psychological to me!

found this:
https://ep.bmj.com/content/90/3/ep74

"several studies have reported significant decreases in seizure frequency confirming the anticonvulsant action of melatonin,4,19,24 particularly for myoclonus seizures and nocturnal seizures.20,28 Melatonin has also been investigated as adjunctive treatment to valproate14 and phenobarbital.20 Such studies showed favourable effects of melatonin, leading to lower anticonvulsant doses, thereby reducing the side effects."

in that research, i see kids over 30 kg using 9mg melatonin. personally, i've been using just 2-3 mg sublingual melatonin to help me get back to sleep if up in the night. have u tried melatonin at all? i used to rely on endogenous biosynthesis. no longer!

[Zyklon]

My lovely cat saved my life yesterday. He just came next to me and gave some grumbling and touching. I have no idea how a cat senses that I am in such a complicated situation and gives help and treats it. Seriously? Get a cat to witness. BTW I wrote this as "Cat a get" and corrected it. I did the same thing a few times when I spoke in the last days. Really weird.

I used melatonin before without any benefit.

I believe that I am relapsing without any mobility/sensory issues. Hence, my docs could not detect it. Monday I can get a quick blood test for CRP and Ferritin levels. I guess I can trust two of them as relapse markers.

If T0+6 months MRI checks show new lesions, I will be right. T0+12 months MRI will show the true Aubaggio efficacy for me.

[jimmylegs]

ok what melatonin dose, just out of curiosity?
glad you have such a therapeutic feline helping you out!

re word ordering, does it sound like aphasia maybe?
https://my.clevelandclinic.org/health/d ... 02-aphasia

ms specifics:
https://www.verywellhealth.com/aphasia- ... is-2440859
"However, now scientists know that aphasia may occur in MS, although it's rare, and that it usually occurs with a variant of MS called tumefactive MS."

first time hearing of that one. anyway, i agree something is going on in there. 'subclinical' is such a pain.

hopefully a strongly anti inflammatory regimen - maybe add zinc, more antioxidants, fish oil - will help settle things down. CRP and ferritin are decent ones to watch. i recently also checked omega 3 index and scored well above the top of the range so knew i had no more work to do there.
if you are able to watch your copper zinc ratio, push it to no higher than 1.0, and aim for O3 index near 8%, vit C near 70 (that's tissue saturation level) hopefully your brain will reward you!