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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question 💭
Bakersfield, CA

Does steroid injection good for flare ups and how you know if you know if you are in remission or progressive. My neurologist couldn't answer my question. He said its to early to tell. I in up in the hospital by ambulance due to the spasms and pain temporary paralyze me were i cannot not stand due to severe muscles lock me from my back down to my thighs and legs. Do anyone exsperience this?

January 21, 2018
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A MyMSTeam Member

They all progress, see pin. Why not call it primary progressive and treat that way and not chance a progression tomorrow that won’t remit?
How can I tell if my progression is happening, if the progression is so tiny I can’t tell. Mri next year might be too late. Am I missing something?

January 22, 2018
A MyMSTeam Member

https://www.healthline.com/health/multiple-scle...

This site explains the different types of MS you can get. How your ms doctor determines which one you have is a mystery. I took an mri of spine and brain without contrast then took one with contrast. My ms doctor asked which med I wanted to start and I thought to myself hu, “I’ll take the one that will fix me.”
Well I started aubagio and since I was no longer working I joined the mymsteam and started to educate myself. It appears that a doctor would give you a close dg of your disease if you have a daily journal to show him. If you don’t have a daily journal then his choice is relapsing/remitting. Waiting is the next step and just hope it’s not the progressive type cause of the 15 meds avaliable only one that I know of is for the progressive type. Ocrevus ,

January 21, 2018
A MyMSTeam Member

@Ocrevus, according to the confusing online information about MS medications, is probably the choice medication for MS of any form. From relapsing/remitting to primary progressive. Asking my ms doctor when can I start will be my next question at next appointment.

See below;

“In clinical trials, @ocrelizumab showed promising results in slowing the disease activity of primary-progressive multiple sclerosis, as well as the more common, relapsing-remitting form of MS,” said Dr. Dhanashri Miskin, attending neurologist at Lenox Hill Hospital in New York City.”

“The three most common patterns seen in MS patients are:
Relapsing remitting MS. There are relapses (episodes when symptoms suddenly get worse), followed by remissions (periods of recovery). Between relapses, the patient's condition usually is stable, without deterioration.
This type accounts for the vast majority of cases at disease onset. About half of people with relapsing remitting MS enter a secondary progressive phase (described below) over time.
Primary progressive MS. Symptoms worsen gradually and continuously. There are no episodes of relapses and remissions.
Secondary progressive MS. Someone who originally had relapsing remitting MS begins to have gradual deterioration in nerve function. This may occur with or without relapses. If relapses occur, it is called "progressive relapsing" MS.”

https://www.drugs.com/health-guide/multiple-scl...

January 22, 2018 (edited)
A MyMSTeam Member

there are only drugs for remit ms. label it so you can get drugs doctors don't want to tell you the worst...take drugs asap.don't wait for another mri.

January 22, 2018

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