Thanks for sharing but one thing I want to dispute about diet is
(if you can't pronounce it, don't eat it)
Psudo scientists and wannabe gurus often say things like this but often simple ingredients like salt or vitamins have their scientific names on ingredients. Just coz you don't instantly recognise it doesn't make it bad. Do a quick Google search of ingredients then decide. It might be a nasty preservative or a simple healthy thing your body needs.
59
u/Material_Sundae_5832
Thank you so much.. this means a lot. You reported back very quick. And looked and took time to respond to all the questions. You are a very kind person.
51
u/MoonElf19
Also RE effective medication on the market: it's spelled Kesimpta (ofatumamab)
It's what I'm on, happy to hear it's a top suggestion!
11
u/HerBonsaiGirl
I find that research hospitals tend to be the most dismissive of the lived experience of smouldering MS.
10
u/spunkerella75
Thank you for reporting back and so fast!
8
u/worried_moon
This is so interesting! Thank you for managing to answer so many of our questions when you have a lot on your plate yourself.
I’m going to stop worrying so much about my Octave results - if John Hopkins doesn’t care about it yet, maybe I should boot it from my headspace. There’s not a lot of extra room there anyway.
Smoldering MS is def a thing, but not everyone talks about it that way. Some say PIRA. It’s definitely an issue - and maybe THE issue for me at the moment - but I can understand why it’s not discussed at your first appt. And…they don’t really know what to do about it anyway, aside from the great advice that they already gave you (strength training, DMTs, etc).
Thanks again for doing this for us!
7
u/LaurLoey
https://youtu.be/IaCdmu61T8k
here is my neuro talking about octave. i found him when i googled his work. 😂 now i know these big conferences are a thing….
6
u/Ethyrum
Thank you. I’ve gone to Hohns Hopkins MS center for 10+ years and have been happy with the care. The answers to the questions you posted sound similar to what my neurologist there would also say. He said the octave test is a bit too new and doesn’t have the standardization yet for it to be meaningful. I trust what I’ve been hearing from this MS center and feel like I’ve received quite good care. My neurologist there are also answers any messages I send through the portal quite quickly.
6
u/Roger_Vandenberghe
Would have loved to hear their opinion on everything gut health related and spinal fluid transplantation.
Like one of the potential therapies i imagine in the future is having your intestines cleaned off any bacteria that's involved in ms (like they do presently for a colonoscopy, the laxative green fluid they make you drink) then transplant a health donors compatible stool.
And the chemotherapy thing, i keep on getting about in relation to ms. Basically they kill all your spinal fluid (where your immune cells are made i'm guessing) and again introduce a healthy compatible donors spinal fluid.
Also if EBV is suspected to have such a high correlation, you would think a vaccine would be the number 1 priority in these research focused hospitals, no,?
Thanks for sharing with us.
5
u/MoonElf19
Thank you!
5
u/Master_Caramel5972
Thank you a lot ! I'll look into strength training, I would not have thought it helps with cognitive issue
5
u/Did_ya_like_it
Bless your heart. So kind of you. Love the response to smouldering MS- so fast. But space and time 🤯
5
u/Reasonable_Life4852
Thank you for sharing!
4
u/Isitoveryet_50
This is awesome thank you so much ! I'm glad you added that about peptides and sleep. Both both are issues I'm dealing with right now and someone I know is urging me to try peptides as it works for so many things and wants me to get them from Russia. But.. not wasting money on something that no one thinks is going to work. And help for sleep? Thank you for that I will try the Magnesium 2 hours before bed because I don't want to feel groggy when I wake up. All of this is really awesome thank you for sharing!
4
u/No-District-9322
this is what i needed to read to start seeking strength training. I was thinking it would get my fatigue really worse, but now im considering at least to give it a try
4
u/[deleted]
Thank you!
3
u/PK5002
Thank you very much. It's so nice of you to share all this information.
3
u/berrattack
Thank you
3
u/NicoleR_24
Thank you so much for taking the time to share this. It’s because of people like you that cares so much that can help find a cure for this one day.
3
u/buderfwy
Thank you so much for sharing!
3
u/Soft_Cash3293
Thanks so much for reporting back 🙏🏻 love to hear about strength training, it's something I really enjoy and it's great to know it's good for us with MS
3
u/Many_Theme4441
Great post. I’m a lurker reading everything as I’m newly diagnosed. Thank you for taking the time to share the information from your appointment. I hope your appointment personally went well.
3
u/my_only_sunshine_
Ugh sucks that the one I was most interested in is the one with the shittiest answer (smoldering MS)
3
u/Cheebiss
Thank you for posting these responses! My husband just had his first outpatient appointment yesterday and the 90 minutes went by so quickly we didn’t get to ask everything we wanted so these responses help!
For your eye, did your neurologist mention trying to treat it again before starting a DMT? My husband’s optic neuritis hasn’t totally gone away and he hates steroids so they’re actually going to have him do plasma exchange. They’re basically going to try to rescue as much of his vision as possible before starting the DMT.
2
u/chunkykima
Thank you for doing this! Saving this thread to come back to and remind myself of those answers.
2
u/Kelevra7_
Thanks!
2
u/Drbpro07
Thanks a lot for sharing
2
u/No-Establishment8457
Thank you for this information! Even as an MS patient for 35 years, always something to learn. Appreciate you.
2
u/sunshine_59_
Thank you!!!! You're the best!!
2
u/mr_bearcules
Very interesting and informative. I’m just starting out on my MS journey and so this info is helpful.
2
u/raptordamus
Thank you for sharing, appreciate you!
2
u/Thereisnospoon64
Interesting re Melatonin. My neurologist flipped out at me when I told her I was on it bc she said it’s completely unregulated plus it causes bad hangovers in the morning. I’ve been on Trazodone for sleep ever since and it’s been great.
1
u/LizzieBourbon
Awesome! Which dr did you see? Mine isn’t super chatty, but he responded to my MyChart question within 5 minutes today.
1
u/No_Consideration7925
So you were just diagnosed. I’m so sorry. Yeah there’s a lot of information out there. Hang in there mind your sleep and healthy daily habits, especially with eating lots of nutrients. Xx
1
u/No-Armadillo-7393
Strange question, still new to this 8 months since diagnosis but what are T-Bands in spinal fluid? I had "O" bands in mine🤷♀️
1
u/asap_stocky
What is the eye thinning about? I’m confused
1
u/Broman400
You lost me at your response to stem cell therapy. It is 100% better than a dmd for a lot of people. AHCST stops disease progression and lasts for years
1
u/FewProgress1797
Thank you for this. First symptom optical neuritis
1
u/NativeSJ
This should be pinned for newly diagnosed folks. Well done!
There was a new drug specifically for PPMS and SPMS that was supposed to get approved last December. The FDA denied it, but it may still come out later.
It’s called Tolibrutinib, and I’m hoping they can jump through whatever hoops are required to get it on the market soon.
I’m sorry for your situation. This disease sucks, specially PPMS.
57
u/FragrantQuail5559
I had a good friend with MS that was in a wheelchair by his mid 30s. I used to hang out with him and play monopoly and just talk. When I was diagnosed several years later I didn’t have the heart to tell him. He has a positive spirit. Stay positive. Life doesn’t end it just changes. Look into programs that can help you. If your doctors office has a social worker ask to speak with them to find out about assistance.
52
u/jmoroni89
Fuck. I'm right there with you brother. 37m.
Been on Ocrevus for 4yrs, PT for 3. Nothing is helping. I've been told I should be in a wheelchair. I fall all of the time.
My daily regimen, baclofen 30mg 4x a day, 10mg edible 2-4x a day. The edible helps my body relax more than just the baclofen.
When I do too much (normal shit for regular people) my index and middle fingers on my right hand spasm and I can't bend them. They eventually go back to normal.
We're too young for this shit man. I hope you find something that helps you and I hope you have someone to talk to about it all.
Stay strong brother. FUCK MS
41
u/Laurenlondoner
Have you had a recent MRI? I’m sorry that is happening to you, MS sucks, and it’s scary😩😩
19
u/ThermostatMcGee
Have you discussed Briumvi, Lemtrada, or Mavenclad??
I'm shocked she just wants to stop at Ocrevus.
I've gone from Tysabri to Ocrevus to Briumvi. If needed, Mavenclad or Lemtrada are next up in my doctor's plan.
Your rapid progression sounds like a reason for more intervention, not less.
16
u/BucktoothWookiee
After I “failed” a few meds, the last being Ocrevus, I did Lemtrada. Have you discussed that option? It’s “big guns” but finally stable and in a remission. And no ongoing infusions or anything anymore.
13
u/Spookynash
MS has destroyed too much of my body to even begin listing. Zero balance, legs declining significantly (below 30% function), spasticity, stiff back muscles (crazy painful). Mobility shot, nerve pain off the scale on a regular basis. It easier to tell you what doesn’t hurt, and what works properly. Crushing chest pain, not heart related. I’m only 53. Had to give up my job of computer programmer when I started 19 years old.
NOBODY SHOULD HAVE TO LIVE LIKE THIS.
You are not alone!! 🙏💛
8
u/Jooleycee
AHSCT available where you live? 38 is too young to stop treatment.
6
u/Bobbybezo
Yes, I'm in the same case, wheelchair and all, PPMS is quite something, I got diagnosed at 49 . Know that I'm with you!
6
u/SpotTheDoggo
I stopped ocrevus after 3-4 years recently, too. In my case, it was still effective, but I developed a very mild chronic lung infection. I cough up the nastiest shit. Sorry to hear about your struggles, buddy. :(
6
u/Daurth_Zombie
I’m most likely on my way. We should all paint our chairs SHINY AND CHROME!!
WE SHALL RIDE ETERNAL THROUGH THE GATES OF VALHALLA!!
My girlfriend is against this. BUT I WILL NOT BE DENIED!!!
5
u/JustlookingfromSoCal
I am more or less in the same situation. But I am a lot older than you.
In addition to PT and Baclofen, I do find that Dalfampridine (Generic Ampyra) does help me with standing, balance and the steps I need to make when walker assisted transferring to and from bed or wheelchair and in and out of my bathroom which is too narrow for my chair.
At your age, I wonder if trying a different DMT makes sense though. Are you able to get a second opinion from another Neuro with an MS specialty?
4
u/Maleficent_Fun_7622
talked with your neurologist about stem cell therapy?
4
u/PK5002
I have SPMS and was on Ocrevus for 2 1/2 years. My neurologist recently switched me to Tysabri because Ocrevus wasn't helping. MS just kept progressing while I was on Ocrevus.
3
u/Jillo616
I would personally look into another opinion. It’s quite possible meds will no longer help you, but damn. I wouldn’t want to give up. I’m sorry for your situation and I hope you find some relief.
3
u/Tall-Pianist-935
Get that new DMT And get some curcumin to help it along. Good Luck.
3
u/Der_Bingomann
Hello. I'm 44 years old. I was diagnosed with PPMS at the end of 2024. I can barely walk anymore. After just one year, I had a 60% disability rating and am already retired because I can no longer work. I need help with everything in my daily life. Ocrevus didn't work for me; on the contrary, I never felt worse, and all my symptoms worsened.
I started making videos about it on YouTube.
I'm taking baclofen and cannabis. I've stopped taking Ocrevus.
There's nothing left to do but accept my fate...
3
u/Ok-Elderberry7087
Yes! Look for CAR-T. Life changing!
2
u/dontgiveah00t
I wish I had advice for the MS, mine doesn’t have me in a chair (yet) but it’s been 1.5 years and still struggle to walk a mile a day (spread out). However for mental heath Spravato really helped me and low dose naltrexone for pain and mood.
2
u/buderfwy
Don't give up! You're important and meant to be here. I love you and am glad we share the same earth at the same time. Keep fighting
2
u/Far_Ebb_7477
Yup. Full time wheelchair user now. Diagnosis PPMS, not taking any ms drugs anymore. Just baclofen and fampyra. Fampyra has helped give me slightly more strength. I think it's called ampyra in the states. I'm in Canada. The meds make the signals jump down the nerves (instead of going down a straight line) with the hopes of skipping a lesion. I mean I can't walk, but when I don't take the meds I have a harder time transferring to the toilet or holding utensils. With the meds it's easier. It's expensive though
I was a photographer and an artist. And now , I don't know what I am
2
u/Wooden-Use-2640
I have primary progressive multiple sclerosis and my neurologist tried telling me the same thing.
2
u/Electronic-Mammoth19
Sending prayers man. 38m here too although early in my journey as I was diagnosed last year. Just did my first infusion of BRIUMVI earlier this week and been on a strict diet since the last relapse. It’s honestly been happening for years, so I’m happy to have an explanation. I read these forums but rarely comment, but your story touched me and I wanted to say you are in my thoughts and prayers.
2
u/Ill_Algae_5369
I'm so sorry. I don't know where you are but maybe there are trials you can get in on? Even if for movement and spacicity not the lesion activity itself?
1
u/Murky_Bird_2695
I’ve been dealing with this since seventeen unfortunately but I’m now bedridden and wheelchair bound. 31 now. Definitely sucks
I am (and have been) in a very similar boat. PPMS, wheelchair, heavy fatigue, no DMT and nothing the docs can do for me.
It may be the end of the line for the docs, but not for me. I still have the rest of my life to live and I refuse to sit back and die.
I am working a different job now (as a specialist with specific knowledge that's rare, at home, part time, just enough money to live, but indispensable for my employer), so I don't have to worry about that at all. I can work there until the cows come home. One problem less to solve. Yes, I am lucky about it.
I am using motorized wheelchairs that are cool and fun to use (This thing and a souped up device that pulls my manual wheelchair up to around 50km/h).
I learned lockpicking for manual dexterity and hand/eye coordination.
I am drilling deep into current MS science and AI technology, writing systems that actually help people with their work. I develop drone software that's autonomous.
Just because the docs can't help me doesn't mean I'm helpless - or useless, for that matter.
16
u/Adventurous_Pin_344
Hi friend. I was diagnosed almost 14 years ago, started having symptoms 18 years ago, and I deal with a lot of the same shit you are describing.
I appreciate the optimism shown here, but unfortunately, there aren't any medications that address our disease stage. We at least are at the next stage of MS research. Current meds do a great job stopping acute inflammation in the form of lesions, but they don't stop whatever is causing smoldering inflammation. (Ocrevus can a little, but they aren't sure why...)
You could do what I do, and spend far too much time on clinical trials.gov, and look for trials that are recruiting for non-active SPMS cases
I am going to try and get into the next stage of CAR-T trials and have been trying to get into a Frexalimab trial. Frexalimab is a BTK inhibitor, a class of drugs that show promise with slowing smoldering disease by limiting microglial activation. Unfortunately, the first one of these to come up for FDA approval (Tolebrutinib) was denied in December. The FDA said it created too high of a risk for liver damage.
I also subscribe to Gavin Giovannoni's Substack "MS Selfie" because he is a huge believer in our stage of MS being the "real MS."
For now, I keep working hard to stay active and mobile, and use what symptom specific treatments I have - Botox for my neurogenic bladder, trulance for my neurogenic bowel, Tizanidine for my spasticity. But it's frustrating and scary to not have any meds to slow our progression. For now, keep an eye on trials! And read Dr. G's stuff!
8
u/cbrooks1232
PIRA is short for Progression Independent of Relapse Activity. It’s also sometimes referred to as smoldering MS.
If I were diagnosed as having PIRA MS the first thing I’d do is get a second opinion. From an MS specialist neurologist.
If PIRA MS was confirmed, I’d find an MS clinic/hospital that was considered cutting edge and learn about potential treatments that many of us with more controllable MS might not know about.
Your doctor’s response mentioned in your title is simply unacceptable and uncalled for and even if PIRA is confirmed I’d find another doctor.
8
u/Amazing_Lead9946
Hey, NO, thats not it
That's all doctors can do YES
But there is a lot for you to do
youll find out that there are many things you'll have to do
Think of yourself right now as a high-performance athlete
no bad nights, stress minimized, good healthy ending
aware of inflammation in any form
No its NOt IT
If you believe it your not doing enough research
7
u/JCIFIRE
That's pretty much it. I was on Ocrevus for 7 years and only got worse. No new lesions in years. Probably had MS for 20 years before I was diagnosed at 43 but never had any symptoms so I didn't know. I am now on Zeposia and still just getting worse. Getting worse coincided with going through menopause at about the age of 48. My walking, balance, and nerve pain are my issues. Nothing more they can do. I don't get MRIs anymore because there is no point. It's not going to change my treatment. This disease has ruined my life and it fucking sucks. I'm so sorry you have it too. Unfortunately aging is not on our side. I have read that getting worse usually hits between the ages of 45 and 50, and that's exactly how it was for me.
5
u/Dramatic_Mixture_877
Have you tried dalfampridine (Ampyra)? I asked my first neurologist about trying it, and it's a gamechanger! I accidentally ran out last year with no refills, and by the time I got some back in my system again, all my coworkers were worried about me - it's not just walking that it helps, it seems to be overall coordination for me. I've also learned that wearing inappropriate footwear will really affect my walking speed, overall tiredness, and balance. My first neurologist kept telling me that if I would go to the gym and work out, I'd have more energy - I told him that if it were that easy, I'd be there with bells on every day! But it's an either/or in my case; I can go walk/work out after I get off work, or I can tend to the dogs, chickens, and us getting fed. There's no and in that equation. My current neurologist totally gets where I'm coming from - he let me try a gamut of stimulants; nothing has helped. Modafinil, armodafinil, Sunosi, Ritalin, Adderall, Adipex, nothing. I asked to go back on the Adderall because it helps me stay focused at work and smooths out my typing for some odd reason (unless you count AuDHD, lol).
3
u/mermaidoutofwater000
Thank you, I also needed to hear this! I agree and thanks for reminding me that do much is up to me ( all of us) . Like eating right and not stressing, getting rest. I just want to make sure that there isn’t also a therapy that can help as well.
2
u/mermaidoutofwater000
Thanks for sharing and thanks for the optimism! It is up to us to keep living and adapt and it sounds like you truly have. Your work sounds really cool!
2
u/Affectionate_Wish795
Please watch Living Proof documentary on Prime. My naturopath also has had success with her MS patients. Theyve gone from using a cane/wheelchair to now jogging. Im hoping for the same or similar results with PPMS.
2
u/alex_rasti13
Complemento la medicación con mi estilo de vida, práctico ayuno, tomo el sol, hago dieta carnívora y ejercicio. Estoy diagnosticado hace más de 15 años y estoy muy bien. Creo que el estilo de vida es muy importante, siempre combinado con la medicación.