Recently diagnosed with Multiple sclerosis

Posted by seanmay23 @seanmay23, Sep 12 11:25pm

Recently diagnosed with Multiple sclerosis, and looking for help.

Hi @seanmay23, welcome. I can imagine that hearing the news that you have multiple sclerosis can lead you to looking for help. You've come to the right place to learn from the experiences of others who have the same diagnosis, like @helenlodahl @kip170 @kco @chris462 @asquires @ydawson @chefbrown @tashanharrell @disneyfan and @babettelizardo

Sean, did it take some time to finally get a diagnosis? What are your next steps? What happens now?

REPLY

Thank you for responding Colleen. The diagnosis came about unexpectedly & suddenly in May. I had vertigo for weeks that finally brought me to the hospital. After a MRI, I found myself at neurologist visits and other doctor visits. I read avidly anyway, hence a new topic, but aside from my wife no one to talk to. Still in shock more than 3 months later.

REPLY
@seanmay23

Thank you for responding Colleen. The diagnosis came about unexpectedly & suddenly in May. I had vertigo for weeks that finally brought me to the hospital. After a MRI, I found myself at neurologist visits and other doctor visits. I read avidly anyway, hence a new topic, but aside from my wife no one to talk to. Still in shock more than 3 months later.

Jump to this post

Haven't heard anything yet, but I'm also not at all how to use this type of format…
Also, my neurologist immediately put me on Kesimpta because we were able to get it for free. 3 months and no results yet. Is that typical. Wait longer? Change medication? Opinions on Kesimpta?
Colleen,
I have so many questions, and only what I can read. I truly need some help. Either with my questions or on how to utilize Connect.

Thanks again,

Sean

REPLY
@seanmay23

Haven't heard anything yet, but I'm also not at all how to use this type of format…
Also, my neurologist immediately put me on Kesimpta because we were able to get it for free. 3 months and no results yet. Is that typical. Wait longer? Change medication? Opinions on Kesimpta?
Colleen,
I have so many questions, and only what I can read. I truly need some help. Either with my questions or on how to utilize Connect.

Thanks again,

Sean

Jump to this post

Hello Sean @seanmay23, I can help with some information on how to utilize Connect. Connect has a Get Started on Mayo Clinic Connect guide that has tips on how to use this site. There is a link to the guide in the left footer column on each Connect page that takes you here — https://connect.mayoclinic.org/get-started-on-connect/

I did a search on Connect and could not find any members who have discussed Kesimpta but I was able to find some recent information that may be helpful – Kesimpta: Cost, uses, dosage, side effects, and more: https://www.medicalnewstoday.com/articles/drugs-kesimpta

I think you are asking a good question about being on the medication for 3 months with no results. It helps me to plan my conversations with the doctor before my appointment. Here is a website that has helped me with some tools for planning my doctor visit conversation – https://patientrevolution.org/visit-tools

Have you had a chance to discuss it with your doctor or neurologist?

REPLY
@johnbishop

Hello Sean @seanmay23, I can help with some information on how to utilize Connect. Connect has a Get Started on Mayo Clinic Connect guide that has tips on how to use this site. There is a link to the guide in the left footer column on each Connect page that takes you here — https://connect.mayoclinic.org/get-started-on-connect/

I did a search on Connect and could not find any members who have discussed Kesimpta but I was able to find some recent information that may be helpful – Kesimpta: Cost, uses, dosage, side effects, and more: https://www.medicalnewstoday.com/articles/drugs-kesimpta

I think you are asking a good question about being on the medication for 3 months with no results. It helps me to plan my conversations with the doctor before my appointment. Here is a website that has helped me with some tools for planning my doctor visit conversation – https://patientrevolution.org/visit-tools

Have you had a chance to discuss it with your doctor or neurologist?

Jump to this post

John,

Thanks for the response and tips on using Connect.
Just now knowing there's not many discussing Kesimpta is informative.
As far as using the site, I think replies are a good start. I have a 3 month appointment coming up to meet with my neurologist to discuss the medication.
I could really use any suggestions on bringing up another medication that has worked for someone else. However however, I have been a subcontractor for so long and do not have insurance. I need to keep that in mind always.I found her disability after I found out the diagnosis.I have an attorney but the process is still slow. My wife and I are hemorrhaging money on doctor's medications et cetera

REPLY
@seanmay23

John,

Thanks for the response and tips on using Connect.
Just now knowing there's not many discussing Kesimpta is informative.
As far as using the site, I think replies are a good start. I have a 3 month appointment coming up to meet with my neurologist to discuss the medication.
I could really use any suggestions on bringing up another medication that has worked for someone else. However however, I have been a subcontractor for so long and do not have insurance. I need to keep that in mind always.I found her disability after I found out the diagnosis.I have an attorney but the process is still slow. My wife and I are hemorrhaging money on doctor's medications et cetera

Jump to this post

I apologize in advance for the typos are you to learn to talk to type because because of the MS

REPLY

@seanmay23 Have you seen the National Multiple Sclerosis Society page? They have a section on the medications used to treat MS that may provide some more information for you — https://www.nationalmssociety.org/Treating-MS/Medications

REPLY
@seanmay23

John,

Thanks for the response and tips on using Connect.
Just now knowing there's not many discussing Kesimpta is informative.
As far as using the site, I think replies are a good start. I have a 3 month appointment coming up to meet with my neurologist to discuss the medication.
I could really use any suggestions on bringing up another medication that has worked for someone else. However however, I have been a subcontractor for so long and do not have insurance. I need to keep that in mind always.I found her disability after I found out the diagnosis.I have an attorney but the process is still slow. My wife and I are hemorrhaging money on doctor's medications et cetera

Jump to this post

@seanmay23, I worked with a young woman when she was diagnosed with MS and I saw how devastating it was. She had terrific insurance so I can not imagine how hard it would be without it. She had relapsing/remitting Ms.
This is the medication she got: Ocrevus. Maybe the company will be willing to help you with it. It worked-it stopped the progression. Best when used early after diagnosis
It's an infusion, twice a year.
My husband is a contractor, too and I understand that struggle.I hope this helps.My thoughts and prayers are with you.

REPLY

Thanks Yellowdoggirl,
Ocrevus is similar to kesimpta. In essence, I'm on a trial with kesimpta, so that explains the free part. It's new and apparently not for me. Overwhelming is the only way to describe it.

Thanks to everyone who has messaged so far though!

REPLY

Hey Sean, have you looked into the nutrition area? The right diet along with vitamins and minerals can make a huge difference.

REPLY

J117,

My wife and I eat a very healthy diet, sometimes too healthy…
Has anyone heard of prescribing ketamine and methadone for pain? That's what I am on through my pain management doctor.
It doesn't work, and all I've read is conflicting or once again I feel like a guinea pig. Please let me know if I am posting my questions in the correct area.

Thanks,

Sean

REPLY
@seanmay23

J117,

My wife and I eat a very healthy diet, sometimes too healthy…
Has anyone heard of prescribing ketamine and methadone for pain? That's what I am on through my pain management doctor.
It doesn't work, and all I've read is conflicting or once again I feel like a guinea pig. Please let me know if I am posting my questions in the correct area.

Thanks,

Sean

Jump to this post

Lol, define "too healthy." Are you on vitamin supplements? D is a big one and you need a lot but really they're all important. Also, there's some immunomodulating herbs you can look into. They've been proven to reduce the level of autoantibodies.

Don't know if this is the right place but I've heard of Methadone and Ketamine being used for pain. I believe Methadone releases endorphins chemicals at a slower rate than opioids. Ketamine can be used as an alternative to opioids. It's also been used to treat depression, RA and fungal infection.

REPLY
Please sign in or register to post a reply.
  Request Appointment