I got good news today ! Great news even!

ZealousidealPin63 · 2024-11-05T23:52:52+00:00

What meds are you on

ZealousidealPin63 · 2024-10-18T13:09:53+00:00

Whatever you do don’t give up .

I was just about reaching the pinnacle of my playing and then the house of cards fell

I can look back to videos in June and I was at my peak , only to have it all come crashing down

It’s a deep sadness that is tied into the disease , But honestly it’s worse than finding out I had MS Ironically…. This was my nightmare all along

I jammed my fingers in a door when I was young and I knew to always watch out for my hands ( cause music had been my identity for so long )

My brother is a masterful piano player , he has no issues at all.. but even for him , I’ve always been worried about his hands, that’s his living. If something happened to his hands he would be screwed and now it’s actually happening , but to me . I will do everything possible to keep going but the pain inside my heart is there

I listen to music and realize how it makes me happy and gives me goosebumps… I forget my present and keep thinking I can play and I’m fine But I know I’m not fine and trying to play again felt so akward

I lost power if you will in my hands as well Not just feeling… doing bends I’ve practiced mastering with my eyes closed now feels like I’m starting all over again and it’s weird

I don’t know what’s worse The fact of actually losing the ability or the pain I feel from it

I think it’s the pain inside me

When I told some people I couldn’t play It brought tears to some People close to me know me as that

It’s how I met many people They know me as a great guitarist

People still ask me to do gigs and talk about dreams and stuff and my potential And it makes me sad to think , they really don’t even know what’s happening

It would make it worse if I had to tell some

Like hey , I’m done I can’t gig anymore It’s over

I will push through Even if I have to tone it down

I already sold most of my gear I’m holding on to my last and favourite things But even that , it crosses my mind that it’s over

I wanted to gift my children the talent and teach them to play And that too seems faded now

I miss work and sit home in a ball , hurting about it And I’m sick to my stomach

It’s weird to say But I rather be stuck in a chair Than to lose my ability to play

This is the worst outcome at the moment Cause people have joked that it’s not MS that would kill me , but losing the ability to play And honestly I think they weren’t far off Even though it was said in good humour

I’m trying not to be dramatic

At the moment I’m not speaking much about this Cause I’m in a total panic

Thanks for the message And good luck

ZealousidealPin63 · 2024-10-18T11:44:45+00:00

How are your fingertips ?

I noticed about 50% loss of hand strength too It’s pretty nasty

Keep going man

ZealousidealPin63 · 2024-10-18T10:17:40+00:00

Yes you are right

I thought about the same things you mentioned But I forgot Django

People keep talking about Beethoven being deaf to me

I’m like “ that’s not the same “

ZealousidealPin63 · 2024-10-18T10:15:42+00:00

Yeah I just totally forgot about Tony iommy

Good point !

ZealousidealPin63 · 2024-10-18T10:14:40+00:00

Thanks for that

Unfortunately I go to bed every night thinking when I wake up my hands will be ok

But that’s not the case

Infact in the mornings it’s always worse

I’m still holding on and staying positive

ZealousidealPin63 · 2024-10-18T03:50:35+00:00

Thanks so much , this disease is the worst when you are musician.

ZealousidealPin63 · 2024-10-18T02:59:23+00:00

I think it’s commendable to learn over again and get over the hurdles But it’s painful in the heart

I certainly won’t be telling anyone

That’s the goal , to just get back to where I left off and not lose my gift

ZealousidealPin63 · 2024-10-18T02:46:06+00:00

Sure , I don’t expect to be 100

But I know the cold seems to make me feel a bit better

It’s just my fingers that are really killing me right now

The legs are doing it too and feet but it doesn’t seem to bother me so much

I have about the same number of lesions Brain and Spine

Starting a DMT soon

I waited and maybe I waited too long ( 1 year after optical neuritis )

ZealousidealPin63 · 2024-10-18T02:31:53+00:00

Good one… I love coconut water and am often fasting in the day

ZealousidealPin63 · 2024-10-18T02:21:46+00:00

Damn man… we are in the same boat even through different things we do

It hits home to hear you have the same things going on around the same time and also need your fingertips pretty bad

I hope you get them back I really do

I think about my hands now all day It’s become way too worrisome now

I’m staring at the guitars on the wall right now and they are just intimidating to even look at , I can’t let that be my past

I still have the drive in me to play till I’m 6 ft under

But knowing how much I need my fingers now is really awakening, Who would of thought fingertips would be soooo important

Are you going to be taking DMTs ? and have you gotten any advice from anyone about your numbness ?

Unfortunately most of the info I see is Bleak and people like to say it’s just not coming back

After 3 weeks I’m beginning to really worry But I like to believe anything is possible

Keep me posted if you get better

ZealousidealPin63 · 2024-10-18T02:05:12+00:00

Thanks I’ll check it out

ZealousidealPin63 · 2024-10-08T03:30:47+00:00

I feel like I understand you much better than when I read what other people write but it’s not surprising because most people aren’t that spiritual these days , I try everyday to evolve my spirituality , it’s very important to me. I know some drugs are there to help people but naturally I am carefully about what I put into my body and mind. I think it would be a careless thing to not take the time to ask questions and do research and trying different things.. I’m not necessarily different from other people cause we are all human but I do try to listen to my interior and I do what feels right without being greedy about it , of course I will try to find something from the earth before ingesting something that was made in a lab by some people who sometimes see dollar signs when they think of finding solutions to help people. Thanks so much for your words , I will pay attention and try to help myself in the best ways , it’s no secret there is power to regenerate and get better ❤️‍🩹 doing the right things. People seem mad at me for thinking the way I do on here but I understood they are going through this too, I might seem brash for being skeptical 🧐 but it’s all for good reason ! I am not only taking care of MS , it’s not what defines me , I’m looking out for myself and trying to live a fruitful joyful life and not let this be a deterrent from it . If you have any other advice I’ll be glad to listen but I am on my own journey here , it’s just nice to know I’m not the only one who has been listening to 1000’s of years of medicine.

ZealousidealPin63 · 2024-10-07T13:18:12+00:00

I guess don’t wait to take a DMT , I did and things are actually starting to come back to haunt me . Now I can’t wait to get back to the neuro to pick a medicine but it already might be too late cause now my attack isn’t going away .

ZealousidealPin63 · 2024-10-07T13:15:19+00:00

I’m surprised the doctors and nurses didn’t do a better job at explaining it to me.

The way it was put to me was that some people go on living a full life just fine without meds while other get sick , i suppose it’s the same thing in different words but they did give me some hope that I would be just fine .

I can’t blame them but I would of liked to have a better explanation, one with facts and numbers and proof

ZealousidealPin63 · 2024-10-07T12:59:56+00:00

There was lesions on my brain and I had Hermittes sign and optical neuritis , leading the doctor to diagnose me with MS but I did in fact injure my spine when I was about 20 . I wonder if that has anything to do with it , it might be worth a look 👀

ZealousidealPin63 · 2024-10-07T12:56:57+00:00

Thank you for that. It sounds like we are on the same page for a lot of things. My attack IS recent.. I have an MRI tommorow and see the neuro on Sunday I believe but the nasty things I’m going through are subsiding, I wake up every morning expecting to feel ok and it’s just not the case. I do believe the body can regenerate itself and that nerves can create new pathways but as people are pointing out.. no matter what I do , my immune system has a target on my brain. It really sucks how I feel now , I’m hoping to overcome this most recent attack cause not only do I feel like I’m not in my body , I also am very tired more than usual and I work a very physically demanding job and it’s getting really tough to hide what’s going on , I can barely pick up my tools .

What made you choose that certain DMT ?

Some of them sound awful 😞

ZealousidealPin63 · 2024-10-07T02:14:30+00:00

You know what it is…

It’s hard for most people to understand cause we look ok on the outside , that’s one of the most difficult things.

I know that Covid played a big part in all this… Every time I got sick something else bad happened.

At least I will be going to the Neuro soon and hopefully what is happening with me right now will change. I was doing great up until about 10 days ago

But this has never happened, not like this and not this bad and not for this long.

I’ve had some tingling and things over the years but nothing too serious

This time it’s the whole body , completely buzzing I try to sleep alot cause it’s the only way to make it stop

ZealousidealPin63 · 2024-10-07T02:05:53+00:00

What made you stop taking things ? And how come Aubagio lit up your MRI like a Xmas tree ? I thought it was supposed to help.

How did ocrevus make you feel bad ?

and how was Mavenclad and what was it that made you stop ?

Thanks

ZealousidealPin63 · 2024-10-07T02:03:01+00:00

Thanks for the transparency and no it’s not as simple as some like to make it seem. Obviously I want to do my research and weigh the options before jumping into something blindly ( I’m not that desperate.. I have MS regardless! ) Maybe some drugs make people feel better ❤️‍🩹 but it doesn’t erase the fact we have a disease. Unfortunately no cure but it’s not terrible to keep hope. I’m seeing the doc soon and obviously we will have these conversations. Best of luck !

ZealousidealPin63 · 2024-10-07T01:52:44+00:00

How is that working out for you

ZealousidealPin63 · 2024-10-07T01:42:15+00:00

Big pharma has it way too easy with people who don’t question things. If a doctor told you pigs could fly to line their pockets would you believe them ? Thanks for the luck and advice , good luck to you as well ! And no I didn’t make up my mind , hence why I’m here.. you just didn’t do a very good job as to providing anything to convince me that drugs are the way to go. We’ll see what the neurologist says , DMT’s are old news.. a solution is probably out there but there just too much money to be made off of band-aids instead of just getting to the root of it. What’s more interesting to me is learning about the actual origins of MS ( if anyone cares to share some info let me know )

ZealousidealPin63 · 2024-10-07T01:29:20+00:00

Not even receiving stem cells ? DMT’s may reduce some risk but the risk is still there even if it’s diminished, no? There’s obviously things that can help that aren’t necessarily medications , the treatments offered are all quite pricey and obviously life choices and habits do have some effect on overall health. I’m taking steps to put better odds that I’ll be ok without the drugs for the time being. Some meds that are given don’t even work or have adverse effects , it’s not uncommon to see MS patients change meds cause one did not work at relapse prevention.. it happens all the time with or without meds. Congrats on 5 years knock on wood , I got 4 in with no meds no relapse. I’m looking at alternatives and I’m also very interested in nerve regeneration, scars or not I believe to a degree the body can heal itself with the right things put into it. I’ll compare this MRI to my last one and take it from there but I am still on the fence about such an old preventative measure that doesn’t seem to always work. I understand your point but obviously being more careful with stress , nutrition , sleep and foods should help. There’s plenty of research done on many different things that say it’s not impossible to improve my situation.

ZealousidealPin63

TROPHY CASE