My Story Vol. 4: HSCT for MS, NIH, Ocrevus, move to CHS
Vložit
- čas přidán 3. 07. 2022
- Join me an my Multiple Sclerosis (MS) friend as we turn 30 (and 12) and escape DC for Charleston, SC. Also BIG, I go to Mexico for HSCT for MS, plus start seeing doctors at the National Institutes of Health (NIH). Help and answers are out there, do what you can to try and find them!
I have collateral a mass too. So I hope you get to feel better and me. Too. On your contend, that makes me happy. Somebody else got the same disease. John will
Hello, I enjoy hearing about your journey with MS. I have been diagnosed since 2002. Have lived to see my 2 children become 32 and 34 years old. I have used a wheelchair since 2005 or so. Did not do much medication or treatments, just found that for me, enjoying the life that I have and relaxing into it has been amazing and continues to be so. I have everything that I need and most of what I want, I am so grateful, satisfied and pleased to have made it to my late 60's. Have a van with hand controls and ramp, an accessible home etc. Having MS made me stop and count my blessings. And to know that life is still amazing. Take care.
Thanks! Glad to hear you're enjoying the ride, it does no good to approach life differently. Driving again is my next big project! I have gone through hand controls certification, now just waiting on insurance to approve a chair I can drive in, and then get a van (or hopefully suv... ). Stay tuned!
@@mldrohan I live in North Carolina, I just bought the hand controls and drove until renewal time , then did driving test. Now I have to do the,medical paperwork and then drive every 2 years. I love the SUV. Paid my van off so happy. I had to follow all the paperwork for my Permobil chair. I called my insurance company and talked to the person who approves the purchase and he did it while I was on the phone. It helps to be proactive.
Hey Michael. You leave the video saying "If you want to fight." I took my fight against MS starting a decade ago. I've learned so much and have recovered way more than what medications could ever do.
So happens a burgeoning protocol of treatment for MS and Neurovascular Disease CCSVI Venous Angioplasty to fix mechanical Vascular issue and stem cell therapy to repair neurological damage caused by leaky narrow malfotmed Veins! #VagusNerve
Keep in Mind!
If you hadn't noticed apparently an Individual undertaking Venous Angioplasty treating CCSVI can require up to 3-4 treatments to notice any impact. Even if a miraculous outcome is noted Symptoms can return and an additional procedure may be a benefit!
So happens a burgeoning protocol of treatment for MS and Neurovascular Disease CCSVI Venous Angioplasty to fix mechanical Vascular issue and stem cell therapy to repair neurological damage caused by leaky narrow malfotmed Veins! #VagusNerve
Got diagnosed with RRMS a month ago and started Ocrevus a couple days ago. Absolutely love this medication.
How you getting on after 1 year?
@@thres34 Very good! No new relapses, progression or MRI activity. Been working 48 hours a week, just focusing on my career.
Been diagnosed for CIS but have multiple brain and spine lesions together with ON - waited 3 months for second MRI this week to see if things are active - not quite sure why I wasn't immediately allowed Ocrevus as I am 100% sure (and the neurologist is 99% certain) it is MS... I am in the Netherlands so i suppose it is the technical detail of needing a second reading that's stopping treatment :/ Seems pretty crazy though - really hope to start a DMT asap as my first attack (ON) has left me blind in one eye (no real changes after 3.5 months) - it scares me quite a bit to know that I could have another attack in my other eye and be fully blind :/ Thanks for sharing your story & I wish you all the best Michael :)
Good luck, stay on finding the answers to help you stabilize 🙏
@@mldrohan Thanks Michael :) great that we can all try to help each other learn more and cope with MS online - that has been one of the biggest challenges to be fair - not quite knowing who to tell and talk things through with :/
I'm relatively young (25) and have not been officially diagnosed (brain & spine MRI where clear) but due to the nature of my symptoms I highly suspect MS. Up and till watching this video I had this as my action plan to fight the disease: best bet diet, supplementation, daily exercising and once diagnosed hop on Tysabri and if the chance for PML get's to high switch to Ocrevus. In addition to that I might inject a bit of testosterone. And then if I would, anywhere in this process, experience worsening of my mobility, I'd immediately go for HSCT.
However, I'm in doubt whether it might be better to go for HSCT asap (once diagnosed of course) and then jump on something like Ocrevus (and thus essentially reverse the plan of action)...
Mitchel, I love how you have thought through this, and your plan of action sounds pretty good to me, honestly. I'm all for exploring HSCT though too, if you have the ability to. I know that prior my HSCT start date I had to go off of tysabri for two months. My armchair doctor self has never understood "step therapy," outside of insurance wanting to start with the cheaper, yet less effective drugs. But HSCT to Ocrevus seems smart. Do the research!
What symptoms do you have?
@@dermlover1 I have very little symptoms left after my stress levels (caused by me thinking I'd have MS) have essentially disappeared. Something I still tend to feel on a weekly/daily basis are: shooting pains throughout my body, feeling of a cold drip of water touching my skin and 1-2 cold fingers (while the rest is warm). It comes and goes.
That's about it. Therefore I now think it actually might not be MS. Hopefully not of course, but time will tell anyway...
Wondering if you you could possibly help put me in touch with the place or physician you used? Very interested in getting this done. I'm at my breaking point. Thank you so much
Hi, yes, check out more about Clinica Ruiz here, hsctmexico.com/
Hi Michael. Nice video. So do you think HSCT didn’t work for you? Your video seemed to imply you thought not because of the spinal tap results. I thought some people can have successful HSCT but still show the oligoclonal bands on a tap. Have you relapsed since HSCT or had disease progression or seen more lesions on an MRI? Thanks
Thanks. So, in terms of spurring any regeneration of ability, no, it did not work. However, did it stop MS? *maybe* It's hard to pinpoint since I have been on Ocrevus since, to hedge my bets. I have not had a true relapse since though, but worsening of my symptoms that were there before