Any new treatments for MS?: My brother in... - My MSAA Community

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Any new treatments for MS?

Luna-blade
Luna-blade

My brother in law has been diagnosed with MS since he was 35 now unfortunately he’s on a wheel chair. Are there any break throughs into MS treatments nowadays? Thank you..

38 Replies
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greaterexp
greaterexpCommunityAmbassador

There are so many newer DMTs (Disease Modifying Treatments) available now. More are coming on the market all the time. Rather that list them all, I'd suggest you just "google" MS treatments. The main thing is that your brother-in-law is talking with his neurologist to see what would work best for him in particular. If he hasn't already, getting to an MS center may be helpful in deciding what treatments, physical therapy, etc. might help him most.

He’s always in touch with his neurologist but in all cases I’m going to check any updates online. Thx for your reply.

carolek572
carolek572CommunityAmbassador

There are so many DMT (disease modifying treatments) here, Luna-blade and so many more are coming to the medical market every day. Look on the msaa.org web site for some information. I found the following that might be a good starting point:

mymsaa.org/ms-information/t...

Keep Smiling :-D

Thank you dear :)

carolek572
carolek572CommunityAmbassador in reply to Luna-blade

Your brother in law is fortunate to have someone like you looking out for him, Luna-blade , because we could all use a little help from our earthly angels. :-D

Thanks Carole though I have pure Ocd and I suffer from it too but I hate to see anyone suffering as well.. thank you for your support :)

carolek572
carolek572CommunityAmbassador in reply to Luna-blade

Please take good care of yourself as well, Luna-blade :-D

Thanks you too :)

Check out:

MyMSTeam

MS News Today

R3 Stem Cell

Exercise is important!

Light Weight lifting !

Check out MS.Shift

Lots of info on Twitter as well

Thank you my friend

i had hsct. i was 32 in a nursing home. got rid of the wheelchair, walker, quad cane but be careful regarding stem cell therapy. a lot is bogus. hsct is stem cells and a ton of chemo. i was treated off study at northwestern and it was amazing. and medicare paid for it.

Luna-blade
Luna-blade in reply to nes78

That’s great I’m happy for you. My brother in law tried chemo but it didn’t yield any results. On the contrary, it worsened his state. He doesn’t dare going for stem cells as it is reported to come with lots of risks. Glad you’re doing well :)

nes78
nes78 in reply to Luna-blade

i'm sorry to hear that. even when first dg. i was on and off of chemo and immunosuppressants because my ms was so aggressive and it really helped me.

even though we all have ms it really is like we all have our very own weird disease. the dmds are not without risk and for me hsct was a final option and i just wish i had it sooner.

Luna-blade
Luna-blade in reply to nes78

Can you please give me the email of your doctor and his address abroad probably we can somehow contact him ?

nes78
nes78 in reply to Luna-blade

this is my short story. vimeo.com/130065935

i was treated off study at northwestern because i would barely walk with a walker. the study is over i believe but i think hsct is done at a few places in the states (cleveland clinic?). i haven't kept up and have been in remission for over 7 years. no dmds. my edss went from 6.5 to 3.5. it is no guarantee but for me and many others i've heard who have had i done it was life changing.

considering i had been to some of the best hospitals in the country i wish someone had suggested this.

Luna-blade
Luna-blade in reply to nes78

Good so you witnessed improvements in your state what about the risks ? Were there any?

nes78
nes78 in reply to Luna-blade

sure there are some risks. i thought it pushed me into menopause. i was 32 when i had it done. i left the hospital and weighed less than 100 pounds. and i spent the next year at my mothers in ny living like we're all living because of covid! no crowds, cleaning everything, face mask, etc. because of all the chemo. my hair turned white. there is a list of things you shouldn't do, certain food you shouldn't eat 3 months after, 6 months after, etc. i don't have kids or pets and don't work so i didn't have worry about that.

Luna-blade
Luna-blade in reply to nes78

Glad you’re getting better. Yeah everything comes with risks but it’s worth it if the benefits outweighed them. I’ll try to get more details about his state and share them ASAP with you if you don’t mind. Thank you for your support :)

nes78
nes78 in reply to Luna-blade

there are some closed fb groups about hsct and for people after they've had it that might be helpful too. people have had it done for various ai disorders and in different locations.

Luna-blade
Luna-blade in reply to nes78

Thanks my friend :)

why does your brothr in law talk to us, he would be more than welcome, a new brother is always a good thing

Unfortunately he cannot move his left hand anymore and barely his right hand to hold a cup so he doesn’t type. Plus, being from Beirut, Lebanon I master the English language more than he does. Thank you for your comment

Beirut, Lebanon, wow that is interesating bet he can tell a few stories, Hope he does okay, give him my best if you coule plese.

Thank you 😊 well actually he’s not doing very well. He’s on a wheel chair now. From an active pleasant guy to an impotent depressed person now. His state worsened after a fight and a nervous shock. He started dragging his leg and over ten years, his state kept worsening till he became paralyzed. He needs constant assistant and help to perform the slightest actions. Sure I’ll send him your regards :)

sounds like disease progressiojn, it is what ms does to us. I know it is hard but for his sake I hope he an find some joy it will do him the world of good, how old is he?

He’s like 47 but unfortunately there aren’t many activities he could do. He’s doing physiotherapy three times per week and just sits outside in the village during summer. Friends and relatives visit him but he cannot really move at all. What about your state?

rube_623
rube_623 in reply to Luna-blade

do you know if he's on a disease modifying drug? it sounds like primary progressive ms...i believe ocrevus(an infusion twice a year) is probably the best one out there for ppms. need to talk to neurologist asap. good luck

Luna-blade
Luna-blade in reply to rube_623

Thank you for your reply. I’ll try to get more specific details about his state ASAP and the kind of Ms he’s got and try to share it with you in the coming days. That way we would be able to help him more and support others as well. I appreciate your support:)

rube_623
rube_623 in reply to Luna-blade

no problem. we're all in this battle together and believe me its a battle. i'm currently considered secondary progressive ms and use a wheelchair more and more...not fun

Luna-blade
Luna-blade in reply to rube_623

May God be with you. We are here for your support

sounds like he has secondary progressive or Relapsing-remitting with some progression

Yeah I guess

well he has you to help and that is a very good thing, abandoning people like us is pretty standard, you caring is unusual

I'm sorry to hear that your brother has deteriorated so much. That's the awful unpredictable way MS goes - some people have hardly any disability from it and others suffer badly.

As nes78 says about HSCT, "be careful regarding stem cell therapy. a lot is bogus". If you decided to investigate HSCT you need to be very wary and make sure you do your homework very thoroughly from legitimate sources, and don't believe everything you might find online about it working miracles for nearly everyone with MS.

mssociety.org.uk/about-ms/t...

nationalmssociety.org/Searc...

The actual statistics are that the death rate from true myeloblastic HSCT has dropped to about 1 in every 200 people or a bit better, but it's still a very high risk procedure. Non-myeloblastic HSCT has not been getting the same positive results with MS as myeloblastic HSCT. It works best early on in the disease course, and while some people get very good outcomes as time has passed they're starting to find that it is not necessarily a permanent "cure" for deterioration - some of the 5 years+ patients are having problems again. It also does not work so well in patients with severe disabilities such as those your brother has, and consequently is not the cure-all that some people claim it to be.

There is also a thriving trade in what's called "health tourism" - where patients spend massive amounts of money to get HSCT in overseas countries, mainly Russia, Mexico, and India, and not all of the hospitals selling this treatment are necessarily where you'd want to go for treatment, you may not even be sure if you are getting what's being paid for. There are also charlatans and rip-off merchants who are selling the procedure to vulnerable people who are desperate but all that's happening for some is that they lose all their life savings. Going overseas for a cosmetic surgery such as breast implants or a tummy-tuck is not quite the same as life-threatening obliteration of the immune system. (Mind you, COVID-19 has severely damaged the medical tourism "trade" everywhere!)

I wish you and your brother the best, neither MS or OCD is easy to live with. Good luck.

Luna-blade
Luna-blade in reply to Frances_B

Thank you for your detailed answer. I appreciate it :)

Yes. Lots of new ones every year. Each with different benefits (and different levels of various risks) for the different types of MS. One of them is Lemtrada. Other replies here are good too.

Thanks for your reply :)

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