Anyone Here with MS

[gib68sg]

I was just diagnosed with it. An atypical type of it too. The lesion is inches long and spans from my brain stem down to my spinal cord. Had headaches for months. Then balance issues. Then vision issues. Got to the point that I needed to figure out what was wrong. MRI and spinal tap confirmed it. Kinda sucks not gonna lie, but I’ll get through it. I do however have do retire from my job in my mid 30s. Thankfully I’ll get a pension still. This is on top of seeing a cardiac surgeon at Columbia Presbyterian next week for unrelated issues.

 

[blazencruise]

I hope everything works out for you brother. Enjoy life and live it to the fullest. Live in the moment.

 

[gib68sg]

I hope everything works out for you brother. Enjoy life and live it to the fullest. Live in the moment.

Thanks brother. I just wanna be able to have a catch with my boy when he’s older. Don’t wanna slowly waste away. I know medicine is great now, just can’t help but think of worst case scenarios.

 

[Splitzz]

Wife was diagnosed with it last year. Was having shoulder pain and got an mri, lesions showed up on it, pumped her full of steroids to kill it off, Took the shoulder pain away instantly. Now we get her IV treatments every 6 months. So far so good, no flare ups
We got Lucky the MRI just caught a glimpse of it.

 

[chooch]

I honestly don’t know very much about it, but my cousin’s wife has been diagnosed with MS for years. I’ve done some Walks for MS with them in the past, she has zero issues walking a mile or so. She also lives a totally normal life as far as I can tell. Have never seen her have any sort of issues and he’s never mentioned anything about her having any issues. I’m sure there’s different severities but it’s definitely not all doom and gloom. Hopefully your diagnosis/life is similar to hers and there isn’t much you can’t enjoy doing.

 

[whacked]

I’m sorry to hear that OP.

I do NOT have MS but I’d be remiss if I didn’t share this in an effort to help.

1. I was a strict Carnivore for a bit and loved it. Prior to and while on Carnivore, I did a ton of research and was amazed by all of the autoimmune diseases it had a profound impact on.

I recall a consistent theme of many people finding relief with Rheumatoid Arthritis, Crohn’s Disease, MS, Lupus, to name a few.

Carnivore is not very popular around here because it’s not the greatest tool for bodybuilding, so run a search on YouTube and Reddit

I encourage you to look into this.

2. There are a few research peptides that may assist you as well.

3. LDN Therapy is not sexy because medical practices don’t make a lot of money on it, but I’ve heard plenty of positive anecdotes utilizing this for Autoimmune diseases as well.

Best of luck to you !!

 

[Heady Muscle 2]

I was just diagnosed with it. An atypical type of it too. The lesion is inches long and spans from my brain stem down to my spinal cord. Had headaches for months. Then balance issues. Then vision issues. Got to the point that I needed to figure out what was wrong. MRI and spinal tap confirmed it. Kinda sucks not gonna lie, but I’ll get through it. I do however have do retire from my job in my mid 30s. Thankfully I’ll get a pension still. This is on top of seeing a cardiac surgeon at Columbia Presbyterian next week for unrelated issues.

Sorry to hear about this.

A friend of mine was just diagnosed in the last six months. He is in his mid-fifties. His wife changed his diet to a Anti-inflammatory Diet and taking supplements like Curcumin and does seem to be helping.

Prayers and Good energy to you.

 

[Splitzz]

Read somewhere when doing research for my wife that bpc157 is showing promise with helping with MS as well. The disease is alot more manageable then it was years ago. Most important is to take the meds to prevent any flare ups from occurring

 

[npcout]

I can’t say much, I feel for you, it’s scary to speculate.

What I can say, I have a coworker who works a pretty serious job, and if they didn’t tell me they’ve had ms for years and around your age, I would have never known.

 

[gib68sg]

I can’t say much, I feel for you, it’s scary to speculate.

What I can say, I have a coworker who works a pretty serious job, and if they didn’t tell me they’ve had ms for years and around your age, I would have never known.

Thanks everyone for all your words. I guess I should be more specific. It’s MS “adjacent”…but most people don’t know what it is so I just call it that. It’s NMOSD. Neuromyelitis optica spectrum disorder. It’s also demyelinating. I’m a fireman, this along with my new found heart issues, means my career is over. New adventures await!

 

[thereaper]

I’ve got MS, what do you wanna know brother! I was diagnosed 8 years ago

 

[thereaper]

Thanks everyone for all your words. I guess I should be more specific. It’s MS “adjacent”…but most people don’t know what it is so I just call it that. It’s NMOSD. Neuromyelitis optica spectrum disorder. It’s also demyelinating. I’m a fireman, this along with my new found heart issues, means my career is over. New adventures await!

So my condition is eerily like yours or at least how it started.

I was diagnosed with ms after getting optic neuritis. I was reading emails one day and slowly developed a dark spot that spread through my whole field of vision. I was in the hospital for a week on drip Medrol. Which cleared of the darkness but the vision in my right eye is for lack of a better term gone. Basically just white haze.

What medication have they started you on? I’ve been in Kesimpta for the last 3 years and I have not had one new lesion on my yearly mri

 

[thereaper]

I can’t say much, I feel for you, it’s scary to speculate.

What I can say, I have a coworker who works a pretty serious job, and if they didn’t tell me they’ve had ms for years and around your age, I would have never known.

This is like me, unless I tell anyone know one would be the wiser. I am extremely lucky as my MS has not progressed past the relapsing remitting stage. I’ve been in “relapse” since my first episode and knock on wood is stays that way.

 

[thereaper]

Wife was diagnosed with it last year. Was having shoulder pain and got an mri, lesions showed up on it, pumped her full of steroids to kill it off, Took the shoulder pain away instantly. Now we get her IV treatments every 6 months. So far so good, no flare ups
We got Lucky the MRI just caught a glimpse of it.

Ocrevus? I’ve heard the iv treatments can be rough but manage it extremely well. It’s interesting to see the medication routes different neuros go so I’m always curious to ask.

 

[seymoor77]

I have a friend with MS and she has lived a totally normal life for the last 15 plus years

 

[thereaper]

I have a friend with MS and she has lived a totally normal life for the last 15 plus years

Yep it’s very possible for a good portion of us. Glad to hear she’s been doing well!

 

[KermiTheGod]

Wife was diagnosed with it last year. Was having shoulder pain and got an mri, lesions showed up on it, pumped her full of steroids to kill it off, Took the shoulder pain away instantly. Now we get her IV treatments every 6 months. So far so good, no flare ups
We got Lucky the MRI just caught a glimpse of it.

What type of shoulder pain? Were the lesions on the bone or soft tissue?

 

[Splitzz]

What type of shoulder pain? Were the lesions on the bone or soft tissue?

Pain was around her shoulder blade area. Why the we got lucky and the MRI just caught a glimpse of her brain, which is where the lesions were and a couple on her spine.

 

[Splitzz]

Ocrevus? I’ve heard the iv treatments can be rough but manage it extremely well. It’s interesting to see the medication routes different neuros go so I’m always curious to ask.

Maybe what it’s called, I’d have to ask her. She responded great to the treatment so far. Had feeling back in her feet and quads the next day. She didn’t realize it but shoes she thought she liked were now uncomfortable. I got her on a lifting program for about a year and can not feel her quads but don’t realize she couldn’t before. Also used to trip alot but has gone away also.

 

[gib68sg]

So my condition is eerily like yours or at least how it started.

I was diagnosed with ms after getting optic neuritis. I was reading emails one day and slowly developed a dark spot that spread through my whole field of vision. I was in the hospital for a week on drip Medrol. Which cleared of the darkness but the vision in my right eye is for lack of a better term gone. Basically just white haze.

What medication have they started you on? I’ve been in Kesimpta for the last 3 years and I have not had one new lesion on my yearly mri

So, obviously super early in the process. This was all done after neurologist visit, mri confirmed “longitudinally extensive lesion on craniocervical junction”. Then, spinal tap confirmed their suspicions. I’m going to Columbia Presbyterian in NYC to see a specialist there who will be my treating physician and prescribe medicines. I like my neurologist, and I respect that he had the balls to say “this is out of my wheelhouse, go see Dr Rebecca Farber”. Look her up, seriously lol she’s the head of the MS center at Columbia, I couldn’t be luckier.

Funny enough, I’ve have a black spot in my left eye for roughly 6-7 years. I completely ignored it. I thought it was from staring at my phone all day. Turns out, it was the beginning of all of this. It wasn’t until my first real full body “attack” in December that I was smart enough to seek treatment. Though, that treatment also happened to catch a congenital heart defect as well as another heart disease. I’m also seeing a surgeon at Columbia for that. Back to back days this week lol wish me luck.

Though, from what I’ve been told by my neurologist, I’ll likely be doing IV infusions every few months. I hope to never have another attack like the one I did, I’m still recovering, though I guess my vision will forever be worsened and my balance problems are here to stay.

Long story short…listen to your damn body, even if it’s as simple as a small black spot in your vision. Get it checked out. I let a disease progress for over 6 years because “eh it’s nothing”.