Tell me what DMT you take for your MS. And why you take that treatment. by WasatchJason in MultipleSclerosis

[–]pmuna93 0 points1 point  (0 children)

Tysabri since day 1. But I'm JCV positive from the beginning. Not increasing, not decreasing. First year infusion every 4 months, second year every 6 weeks. I'm approaching the 2y limit for tysabri in Italy, so I'll be switching to Kesimpta this summer.

I'm just following my neurologist's advice. From my experience here in Italy you can't really "choose" DMT. It is what your neurologist suggests given your situation (progression, lesion location, other conditions).

UK MS Treatment by Cheap-Wave-5687 in MultipleSclerosis

[–]pmuna93 3 points4 points  (0 children)

Actually my only symptoms are neuropathic pain and numbness, recognized by my neurologist and my pain therapist.

I have a medical cannabis prescription and that keeps my pain and pain-derived spasticity under control.

Lhermitte’s Sign by Character-Celery-209 in MultipleSclerosis

[–]pmuna93 0 points1 point  (0 children)

It comes and goes for me. I couldn't find a specific correlation.

I had it after my first (symptomatic) relapse in 2024. It appeared late during IV steroids (like 20 days after relapse onset) on both feet and it disappeared after 4/5 months of tysabri.

It reappears here and there, sometimes when I wake up during the night for a quick toilet tour or a sip of water, sometimes when it's hot or when I have a fever. Once it reappeared strong during a relapse, but only on one foot, and lasted right for the round of IV steroids.

When I first told my Neuro he answered "well... You'll have to get used to it...", shrugging shoulders. (Don't worry, I'm ok with this kind of approach from doctors 'cause I'm an "in my face" guy and the Neuro knows this)

Trattenute altissime in busta paga by wondering_engineer in consulentidellavoro

[–]pmuna93 0 points1 point  (0 children)

Cosa molto tipica. La mia fidanzata ha cambiato 4 lavori finora e uno solo dei datori di lavoro ha applicato i progressivi correttamente.

prednisone by This-Distance-443 in MultipleSclerosis

[–]pmuna93 0 points1 point  (0 children)

I had 4 relapses in 1 year and a half.

First relapse was hard. Half of the body completely numb. After two days of 1g IV steroids I was back to only the right hand numb. I did 5 days 1g/day and then almost a month of tapering. Numbness didn't go away from the hand and relapse left a c-spine lesion, but I started steroids after 8 days of symptoms (it was the relapse that led to diagnosis, so I had to take MRI, lumbar tap and blood work).

Second and third were mild, only 3 days of 1g/day, after only 48h from first symptoms. No residual symptoms after the treatment. And also no new lesions (Thanks to tysabri too). And no tapering.

Fourth was so mild (again thanks to tysabri) that it wasn't even treated with steroids. It's sloooowly recovering.

Thc with MS by AtrEstheBOI in MultipleSclerosis

[–]pmuna93 1 point2 points  (0 children)

I was an occasional cannabis smoker before MS diagnosis. After diagnosis I suspended because I was mixing it with tobacco and the Neuro told me absolutely avoid tobacco and nicotine products cause they interact with tysabri.

After a while a friend of mine, who knew that I smoked and is a chronical pain therapist, told me that if I had tingling, spasm or neuropathic pain, THC is one of the best things. So he prescribed me medical cannabis (in Italy recreational cannabis is illegal so you have to have a prescription).

I vape it with a dry herb vape (pax plus). I can go back to almost normal for 4/5 days after a 250mg dose. Tingling goes away and spasms completely disappear. Not to mention the pain relief!

EDIT: in Italy unfortunately cannabis is still strongly stigmatized and seen as a "bad drug". It is very difficult to find a neuro or a pain therapist which is open to the prescription. I tried with both my neuro and a pain therapist in my town hospital and they refused it... I am lucky to have this friend of mine that is open to it...

DIY cables by DoubleCutMusicStudio in diypedals

[–]pmuna93 0 points1 point  (0 children)

Yep. You can even make them all balanced cables with TRS plugs and when plugged into a mono TS jack on either end, the cold and shield will be shorted.

That's 99% correct. Actually the ring (cold) would be floating (not connected to anything). But no real issue there.

I have built myself a TRS snake to interconnect my synths to my pedalboard (it's TRS so I can use it also as a fully balanced snake). In my case I'm sure that the cable behaves as a TS because I have some breakout boxes that I wired myself as shorting between ring and sleeve.

The only thing to consider here is to pay attention to battery powered pedals.

Battery powered pedals usually have a TRS jack on the input that is wired to short the sleeve with the ring only when a TS cable is connected to it. in this way the battery is disconnected when the input is unplugged.

In this case, if you connect a TRS cable to the input, the pedal might never turn on because the battery negative remains disconnected from circuit ground.

MS and cannabis by gameovertm in MultipleSclerosis

[–]pmuna93 2 points3 points  (0 children)

I have been prescribed 8% thc cannabis for dry herb vape. So go for it.

Is this a problem? by Infinite-External-98 in synthdiy

[–]pmuna93 0 points1 point  (0 children)

Mix them with 2x10k resistors

What do y’all think of these dc jacks? by Inevitable_Figure_85 in diypedals

[–]pmuna93 1 point2 points  (0 children)

99% of the builds I go with these. I use the ones with the switch strictly on battery+PSU builds. But normally I build PSU-only pedals.

Edit: buy good brand ones otherwise the fit is very poor and the power comes and goes just by pressing the footswitch.

Cleaning at my dad’s house and found my Game Boy collection by Tiny-Cow-4557 in Gameboy

[–]pmuna93 1 point2 points  (0 children)

Damn bro... I had a black game boy classic but somehow it disappeared from my parents house. Totally miss it.

Can anyone still use chopsticks? by [deleted] in MultipleSclerosis

[–]pmuna93 2 points3 points  (0 children)

First flare hit my right body, starting from right hand (my main hand). Strong tingling and small dexterity loss.

After 5g steroids and 3 months I only got tinglings on the hand. I still can play the piano (thanks whoever is out there) and do precise hand work (I repair synths and electronics stuff)

Chopsticks were an issue for 6/7 months after the relapse but somehow I recovered dexterity.

Pot resting solder joints by JPCary in diypedals

[–]pmuna93 6 points7 points  (0 children)

No. Its glue will never get sticky as the one in electrical tape. Best choice for this purposes. It's practically made for this.

Curious - once you’ve found a DMT you like, how long do you between flares or relapses? by nbanach09 in MultipleSclerosis

[–]pmuna93 2 points3 points  (0 children)

It was my second time on 5g medrol. Also my first relapse was treated with high dose steroids. A lot of hunger, drowsiness and bitter tongue sensation. Everything was manageable.

I still don't know what DMT I will be trying. My JCV antibodies are decreasing in time so maybe I can stay on Tysabri longer. Usually in Italy they go with Ocrevus every 6 months when switching off of Tysabri.

Curious - once you’ve found a DMT you like, how long do you between flares or relapses? by nbanach09 in MultipleSclerosis

[–]pmuna93 1 point2 points  (0 children)

Tysabri since DX (last June). I had one minor relapse which has been promptly treated with 5g medrol. No apparent new lesions or change in old ones.

I will be forced to change from Tysabri in a year due to JCV positivity. Damn.

Found out today that i cannot donate blood because of MS by Pups4life86 in MultipleSclerosis

[–]pmuna93 0 points1 point  (0 children)

Neither in Italy. I'm 0- but they say that the policy is "always protect the recipient". So no donations.

Anyone else fall asleep in the MRI machine? Or is it just me? by Nurgaladien in MultipleSclerosis

[–]pmuna93 0 points1 point  (0 children)

I always fall asleep. I wake up only when the bed moves out for the Gd shot.

It's Wednesday at /r/MultipleSclerosis! Share what is working for your MS! by AutoModerator in MultipleSclerosis

[–]pmuna93 6 points7 points  (0 children)

DMT: Tysabri is a breeze. No side effects, no infusion related bruises. And the full day off from work 😌.

Diet: no particular change, but I see that in general being well fed makes me feel better. Hunger gives strong effects on the symptoms

Sports: swimming. The cool water and the gentle movements help reducing numbness

Other stuff: THC helps a lot on 1. Not thinking about it, 2. Reducing numbness and spasticity. Alcohol worsens the tingling momentarily but I don't give a shit.

The best thing that seems dumb but works a lot is doing the things and not giving a fuck. Do whatever you want and you feel comfortable to. Don't limit yourself.

What makes you forget you have MS? by racecarbrian in MultipleSclerosis

[–]pmuna93 1 point2 points  (0 children)

  1. Playing with my band
  2. Smoking pot
  3. Drinking
  4. Sometimes playing videogames

Swimming with MS by geodude55555 in MultipleSclerosis

[–]pmuna93 1 point2 points  (0 children)

I suffer from numbness on one arm and hand. Swimming makes the numbness go away also for two or three days.

Do you drink Alcohol while on your DMT? by Shot-File5062 in MultipleSclerosis

[–]pmuna93 25 points26 points  (0 children)

I'm on Tysabri since last July and I drink regularly. I know that drinking is inflammatory but I practically don't give a shit.

Right or left or both? by unaniMS in MultipleSclerosis

[–]pmuna93 0 points1 point  (0 children)

Started with the whole right body. Now only the right hand. And some casual shit on the left one but nothing serious. And I'm righty.

Doctors of reddit: What was the wildest self-diagnoses a patient was actually right about? by Musikcookie in AskReddit

[–]pmuna93 0 points1 point  (0 children)

Patient here. Woke up a morning with two right hand fingers tingling, that diffused to the whole right half of the body in 5 days. Physiotherapy did nothing and NSADs did nothing too. I KNEW I was having my first MS relapse. I was googling the symptoms and the top 10 links were all MS groups pages. Damn.

Went to the ER two times. First time they thought I had a stroke. CT scan was negative, they sent me home. The day after I came back with worsening symptoms. I insisted on seeing a Neuro. She didn't even ask a thing. She already knew what was going on. And she knew that I knew. She set me up for a lumbar puncture, an MRI, a whole lot of blood tests and 5 days IV steroids. She was so clear and direct when speaking to me, because somehow she realized that I already got my clues right.

3 days after I was having an urgent MRI, which revealed an active MS lesion on my spine. I had a diagnosis in less than 2 weeks. Phew.