Have You Joined Our MS Forums Yet?

Have You Joined Our MS Forums Yet?

It’s been about nine months since we created the MS Forums section on the Multiple Sclerosis News Today website. It’s a place designed to host conversations about our MS experiences and to find some answers from reliable sources when you have a question. You can even begin your own discussion about a subject of interest by starting what we call a “topic.”

Here are the topic areas on the MS Forums page:

Alternative Treatments: From vitamins to oils and even bee stings, this forum is devoted to exploring therapies beyond the standard, conventional MS care and treatments.

Durable Medical Equipment: Do you have a scooter, walker, crutch, brace, or other assistive device? Thinking about getting one? Here’s where to talk about it.

Living with MS: This is our general posting place. General topics about dealing with the challenges of MS go here.

MS Drugs: This forum is for discussions about disease-modifying therapies (DMTs), including Lemtrada (alemtuzumab), Ocrevus (ocrelizumab), and Tysabri (natalizumab), as well as symptom-treating medications like steroids, baclofen, and others.

Parents and Caregivers: This forum is a place for MS parents and caregivers to talk with each other, share tips, ask questions, etc.

Polls and Quizzes: You never know what interesting quiz might pop up here.

Sports, Exercise, and Travel: Do you ski? Have a good exercise routine? Have you traveled to someplace interesting? Share your tips on how you managed MS while you did it.

Treatments and Trials: This is where you will find information about new research and treatment trials.

Registering for the MS forums

Getting started is easy. The first step is to create a profile. Simply go to the MS Forums page and click “register.” (The register link is on the right side of the page under the “Log In” fields.) After you enter some basic information, you’ll see an option to write a short, 300-word bio about yourself. You don’t need to do that — but we all like to know a little about our MS friends.

From there, you should go to the main forums page. These are public forums, so all posts will be visible to anyone who visits this page. You’re encouraged to reply to other users’ posts or to start a discussion topic of your own. All of the discussions are monitored by me and our other moderator, Debi. We like to jump in and participate.

We also have a private messaging feature so that members can contact each other directly. If there’s something you want to discuss that is more personal, the messaging feature gives you the privacy you need. Simply go to the profile page of the person you’d like to reach out to and click the “private message” tab to start a conversation. You will receive a notification if they reply.

If you’d like to join the conversation, click here. Or, you can click on the “Forums” tab at the top of the website’s homepage.

Debi and I hope you’ll join our conversations.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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One comment

  1. Keir TIMBRELL says:

    Ocrevus and the benefits in treating PPMS. Can someone please explain what treatments NICE compared the cost of OCREVUS with in PPMS. As a person with PPMS my understanding is that there presently exists no treatment for PPMS and therefore no comparison could be made therefore as there was no benchmark it was declined by NICE.
    However, because there was benchmark in RRMS a comparison could be made it was approved for NHS.
    This would seem counter intuitive in the fact that if a cure was found there would be no benchmark and therefore NICE would be unable, under their present methodology, to approve the cure!!!!!
    Finally I would like to have NICE to consider the cost effectiveness of letting the condition deteriorate and the costs to the NHS that incurs against the administration and cost of Ocrevus to the 10% of the MS sufferers who have PPMS without any xisting specific treatment.
    Again PPMS sufferers lose out because there is little understanding of MS and its different forms by NICE.
    Can someone explain the /nice rational why 90% are approved and 10% are not, either MS is all encompassing condition, or RRMS, SPMS and PPMS are actually different conditions and are treated as such.
    If Ocrevus works for MS, and is approved by NICE and is presently available on the NHS as a whole, why do people with PPMS not get it when it is documented and agreed that it holds back MS progression, and there is no distinction between the different variants of the condition acknowledge by NICE.
    THE FORGOTTEN FEW
    #

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