Let's Do a Trial Run of Questions for the "Ask the Expert" .

[Fancy1959]

This post is to give everyone the opportunity to inspire one another and come up with questions that reach to the depth of the issues many of us face on a daily basis due to our MS. I wish to limit each individual to asking only three questions. I am sure that many questions will overlap and you will find answers to questions you did not even know you had by being a part of the "Ask the Expert". I am not trying to discourage anyone from asking question that are unique to their situation. We all know that each one of us travels down a different path with our MS, so therefore issues might be different for each and everyone of us. I simply thought that by working on this important question and answer session coming up we would be better prepared when the actual "Ask the Expert" session came about.

My question is:

1. Is the new medication, Ocrelizumab, still on track to be approved for use in MS patients toward the end of March?

I'm going to wait until I hear everyone else's questions before I ask any other ones. That's because I believe I'll be inspired by your questions and, as usual, continue to learn things from each and everyone of you.😊🙄

[cnichols]

I see my neuro April 10th, he hopes to have news then. Currently doing rituxan.

[erash in reply to cnichols]

cnichols

My neuro has told me great results with Rituxan

Hope that's the case for u 2

[cnichols in reply to erash]

Rituxan has been great!

[erash in reply to cnichols]

cnichols supposed to be very similar to the soon to be approved (hopefully) Ocrevus

[Pbailz in reply to erash]

cnichols that is great to hear because I've only been on it since Thanksgiving and so I haven't seen the results but my neuro does it has good results so we will see

[BillD999 in reply to erash]

@erash It is my understanding that Rituxan is primarily for RRMS, while Ocrevus may be effective for progressive forms of MS. Is this correct?

[erash in reply to BillD999]

BillD999

The differences are mostly because of where the research was done. And the latest theory show that relapsing remitting MS and progressive MS are not such different animals

My understanding of the main differences b/w Rituxan and Ocrevus are in milder side effects with Ocrevus. But maybe this is a good ? For the expert 🤓

[mrsmike in reply to BillD999]

Hi, I have SPMS and have been on Rituxim for the.last three years. It has slowed my progression down, but hoping ocrelizumab will slow it down even more.

[cnichols in reply to erash]

Rituxan is the synthetic version of Ocrevus. I am lucky I had no issues with Rituxan so transition to Ocrevus should be a breeze.

[BillD999 in reply to cnichols]

@erash, I know that we as patients don't see a clear distinction between RRMS and SPMS, but if a med is only labelled for RR it may not be possible to obtain it if one is diagnosed as I am with SP.Some doctors may be more flexible but there are also insurance issues.

@cnichols, Do you live in the US? According to my reading Rituxan is not approved for MS in this country, although it is approved for other things.

[Fancy1959 in reply to BillD999]

BillD999, hello and welcome to this wonderful chat room from Fancy1959. Since I don't beleive I've spoken to you before I wanted to say welcome to this awesome chat room. Because Rituxan is not approved for Ms in the US, I have never been on it. When I was diagnosed three years ago I was diagnosed as relapsing and remitting MS. The end of last summer my MS was increasingly worse. It's like I was sliding down a hill in the mud and I could not stop the downhill slide. I went into then determined I had gone into secondary progressive MS. Believe me when and if it happens to you, I hope you never get to secondary Progressive, you will be able to tell the difference between the two. There are no remission cycles when you get better there's just a gradual decline really attempts to suck the life right out of you. Some neurologist sometimes try not to label you secondary Progressive because when they do, insurance companies try to write the patient off as beyond help and refuse to pay for additional therapy.

Ocrelizamab will be labeled for Ms in the United States if it ever gets approved by the FDA. That's going to be my first and only question for ask the experts if it's still on time to be released sometime this month. Hopefully it will be released even before we have our the experts question-and-answer session at the end of March. Some studies of this new drug has shown promise of not only slowing down progression of MS symptoms but also shows some promise in actually regrowing Mylan to some extent. Would be a real game-changer MS patients.

Erash, thanks for your help and as always I have learned much from you on this post.

[erash in reply to BillD999]

BillD999

I will post several articles @ the blurring distinctions b/w types MS in a separate thread (wont let me paste here 🙁)

Agree, pharma may try to stress distinctions to avoid payment. Often your doc can make a case for off label use of a drug and get auth. For $

[cheshcat]

My question is if general body pain is associated with MS?

[Fancy1959 in reply to cheshcat]

Chestcat, great question! I guess I must be truly blessed because I don't seem to be in as much pain as many people with MS.

[CalfeeChick CommunityAmbassador in reply to Fancy1959]

I guess I'm very lucky also, I have never had what I would describe as pain. The numbness and tingling and I have had for the last seven or eight months since I went numb was becoming very very very uncomfortable and that's when I last saw the Neuro and got prescribed gabapentin which is helped me. My pain is when I had back surgery and my knee replacement.

[Jesmcd2 CommunityAmbassador in reply to cheshcat]

cheshcat l say yes! Or it major affects the pain lm already in! Not to mention the server hot and cold sensations but that's just me. ☺

Jes🌠

[Morllyn]

Can chronic headaches be related to MS?

[erash]

Fancy1959 I posted Hafl a dozen ? S in the 2 prior posts, yours and Jes. Do I need to repeat them in order to weigh in here? Thanks!

[johnMSAA Partner in reply to erash]

Thanks for all the question content, @erash! Nope, no need to repeat posts or replies to Fancy1959 or Jesmcd2 for this AMA (Ask Me Anything) coming up on March 29th. We'll be able to search for all posts/replies that pertain to the AMA and put them together for our MS expert ahead of time.

But when it comes time for the hour-long AMA, everyone on here is encouraged to fire away and ask the MS expert, well, anything!

- John, MSAA

[erash]

Thanks! johnMSAA

Any idea what time yet?

[johnMSAA Partner in reply to erash]

It will be based on our MS expert's best availability - more soon!

- John, MSAA

[johnMSAA Partner in reply to johnMSAA]

Time is now official: 6pm to 7pm Eastern on Wednesday March 29th!

- John, MSAA

[Shona68]

Hi is it normal for ms symptoms to flare up when due a period,thanks x

[cheshcat in reply to Shona68]

Oh, I really want to know this too!

[Fancy1959 in reply to cheshcat]

Shona68 & Chesscat, that sounds like a girl question to me. Hahaha. I actually started getting migraines every month at that specific time, but they were relatively mild migraines. That started to happen in my early 40's. I would have a headache that would last sometimes for 3 to 4 days. Yuck. Then, especially for the women in my family, I went into menopause early in my mid 40's. I wonder if MS could have had anything to do with that? Personally I think that would be a great question.

[mrsmike]

Hi Fancy1959,

I see my Neuro in June. I know she wants me to try ocrelizumab once it is approved. I am currently on Rituxim, which has slowed my progression down, but hoping that ocrelizumab will slow it down even more. Has anyone heard when it will finally be approved?

[Jesmcd2 CommunityAmbassador in reply to mrsmike]

Hi mrsmike and Fancy1959 , erash just posted an article about the date being st for the 28th of this month!

Check out the article!

Jes🌠

[Fancy1959]

Mrsmike, I think that's the million-dollar question that many people with Ms want to know, including me. Keep your fingers crossed it's supposed to be released sometime this month unless it gets postponed for a second time. If I hear anything I'll let you know and I'm sure John will let us know if he find out anything also.

[CalfeeChick CommunityAmbassador]

My question is why do they test your optical nerves and nerve conduction in cervical & thoracic spine? I have a 5hr appt scheduled for Mar. 21 at MS Clinic at UCSF. It would be good for me to be more aware beforehand. Lynn

# calfeechick

[Fancy1959 in reply to CalfeeChick]

CalfeeChick, it's Fancy1959. Have you had vision problems lately or repeatedly? The only time I had my eyes checked that thoroughly was after I had some complicated vision problems. Then the testing was done by an expert/surgeon of optometry. Are you going to an large MS Clinic? It is very possible they can have a multitude of specialist present. CalfeeChick, why don't you give them call and ask for a nuse and find out what a visit of that length entails? They might even be planning on do some MRIs on you. Oh by the way, I think it's a very good question! Fancy

[Midgey_Midge06]

Is insomnia part of MS? Is the only question i can think of

[Fancy1959 in reply to Midgey_Midge06]

Midgey_Migde06, it' Fancy1959, I would love to know the answer to that one also! I don't know if I think MS is the cause of my insomnia or if it's being a woman heading toward 60 with very little female hormones present. Either way it stinks! How are we supposed to take care of our health without the proper amount of sleep.

[Midgey_Midge06 in reply to Fancy1959]

I already went thru menopause wen i had a total hysterectomy 3 years before my MS symptoms started. I didnt have insomnia then and now i am on HRT. My insomnia started wen i started taking Tecfidera but i have long since stopped and my insomnia is still with me

[Shona68]

Hi why is it some days my ankles feel like their gonna snap and then other day I feel fine with no stiffness or pain or its in the other foot ' makes u thing it's all in ur head at time xx

[Fancy1959]

Shona68, it's Fancy1959. I don't believe it's in your head and don't listen to anyone who might suggest otherwise, like my husband! I know a multitude of MS patients who suffer from the same spasticity issues you are descibing. Mine hits my knees and is starting to take a toll on my knees. They are starting to hurt a lot. Yuck....

[erash]

Fancy1959 heres one more ?

Is melatonin ok for people with MS? I've heard it can possibly be a problem because it stims the immune system. Thank you

[Fancy1959 in reply to erash]

Erash, once abain you are a font of information that I learn continually from! I think it's a great question! Fancy1959

[Jesmcd2 CommunityAmbassador]

Another question..

Why does MS cause such fitigue? And why is it such a different fitigue?

Jes🌠

[Fancy1959 in reply to Jesmcd2]

Jesmcd2, it's Fancy1959. The only fatigue I could ever compare to the fatigue I feel from MS is when I'm extremely ill. That would entail when I had the flu or when i had pneumonia about 10 years ago. I truly think it's a fantastic question that many people will relate to!

[Shona68]

Hi fancy 1959 I put a reply up thanking u for getting back to me and for some reason it's not on here ,do hope ur knees will be kind to u today x

[Fancy1959]

Shona68, thanks for asking about my knee. I started wearing a brace on it today. I hope that helps it You don't know what a big smile you put on my face for caring enough to ask. That's the best part of this chat room is that we all understand what each other is going through! Fancy1959.