/r/SaskMS
This is a forum for sharing issues related to multiple sclerosis for Saskatchewan (and area) residents. This information includes, but is not limited to, nutrition, exercise, personal accounts, pharmaceuticals, and all other treatments available to Saskatchewan residents. Family and friends are welcome! It's also a safe place to vent. The advice here is not a replacement for professional help.
Our Rules
Be kind. No name calling or personal attacks. Think before you post, particularly in sensitive threads. Inflammatory comments will be removed.
No fundraising. Many of us are those you are raising funds to help. We appreciate the support but links to fundraising sites, auctions are sent to spam. No personal fundraising please either.
No diagnosing the undiagnosed. Don't suggest that an undiagnosed person’s symptoms resemble those of Guillain–Barré, ALS, or other diseases or disorders. If you are undiagnosed and suspect you have MS, consult a health care provider.
No advertising for your own personal medical services.
No solicitation. If you'd like survey participation, please contact the moderators explaining the survey. Do not post surveys under brand new accounts. All surveys go to spam by default. If you're looking for feedback for start-up organizations, message the mods before posting. All solicitation posts will be removed.
Self-promotion/blogging, Do not to spam the subreddit with repeated links to external groups, blogs, or services. If you'd like exposure, consider reddit advertising instead. Bloggers must also engage on reddit (here or elsewhere) in other ways such as sharing links that aren't self-promoting and by participating in the comments. No hit and run blogging or other self-promotion.
No tough love. In response to people struggling with suicidal feelings, do not reply with pro-suicide comments including any explicit discussion of suicide methods. Violating this rule will result in an immediate ban. Those wishing to talk about suicidal thoughts, please see here. We are not equipped to weigh in on your situation and there are subreddits specifically for such conversations.
Message the moderator if your posts aren't showing up or if you have moderator-level suggestions.
Do not suggest illegal activity here - those posts will be removed. What you PM is your own business.
Related subreddits:
Chronic Cerebo-Spinal Venous Insufficiency
Support subreddits:
For those struggling with suicidal feelings
More information:
Above MS (Staying active with MS)
Multiple Sclerosis International Federation
Friends:
/r/SaskMS
75 Subscribers
AMA with Dr. Vicky Leavitt today 10am-12 pm EST
13:26 UTC
Guide to Disease Modifying Treatment
#Disease-modifying treatment
Strong evidence suggests that Multiple Sclerosis is caused by the immune system causing inflammation and attacking nerve cells and myelin, which is the protective coating surrounding the nerve fibers. Medicines that change the way the immune system works can reduce the number and severity of attacks that damage the nerves and myelin.
For people who have Relapsing-Remitting MS, disease-modifying therapy can reduce the number and severity of relapses. It may also delay disability in some people. Disease-modifying medicines may be used for MS. Your doctor will prescribe a medicine depending on the type of MS you have, your symptoms, and how your body responds.
They include, but not limited to:
[4-Aminopyridine (Ampyra).] (https://ampyra.com/)
[Alemtuzumab (Lemtrada).] (https://www.lemtrada.com/)
[Dimethyl fumarate (Tecfidera).] (http://www.tecfidera.com/)
[Fingolimod (Gilenya).] (http://www.gilenya.com/index.jsp)
[Glatiramer (Copaxone)] (https://www.copaxone.com/)
[Interferon beta (such as Avonex] (https://www.avonex.com/), [Betaseron] (https://www.betaseron.com/), Cinnofex, and Plegridy, Rebif ).
[Mitoxantrone (Novantrone).] (http://www.nationalmssociety.org/Treating-MS/Medications/Novantrone)
[Natalizumab (Tysabri).] (https://www.tysabri.com/)
[Teriflunomide (Aubagio).] (https://www.aubagio.com/)
[Ocrelizumab (Ocrevus).] (https://www.ocrevus.com/) Is the first treatment for Primary Progressive MS, approved in 2017, for Relapsing-Remitting and Secondary Progressive MS.
Off Label Use:
[Mycophonolate Mofetil (Cellcept).] (http://www.cellcept.com/patient)
[Cladribine (Movectro).] (https://www.mstrust.org.uk/a-z/cladribine-movectro)
[Cyclophosphamide (Cytoxan).] (http://chemocare.com/chemotherapy/drug-info/cytoxan.aspx)
[Azathioprine (Imuran).] (https://www.mstrust.org.uk/a-z/azathioprine-imuran)
[Minocycline.] (https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/minocycline)
[Rituximab (Rituxan).] (https://www.rituxanforra.com/)
[Statins (Simvastatin).] (https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/simvastatin)
Some people have only one episode of a neurological symptom such as [Optic Neuritis] (https://en.wikipedia.org/wiki/Optic_neuritis). Yet MRI or other tests suggest that these people have MS. This is known as a [clinically isolated syndrome] (https://en.wikipedia.org/wiki/Clinically_isolated_syndrome) (CIS). Many of these people go on to develop MS over time. In most cases, doctors will prescribe medicine for people who have had a clinically isolated syndrome. These medicines, when taken early or even before you have been diagnosed with MS, may keep the disease from getting worse or extend your time without disability.
It is in your best interest to learn about these medications, speak with your Neurologist on your options, the side effects, and what best suits your life style before making a decision.
18:23 UTC
MS patients ineligible to donate blood to Canadian Blood Services
After talking with people in my MS group, a lot of people were unaware they wouldn't be able to donate blood anymore due to MS.
I'm in Canada, and I know Canadian Blood Services will not allow me to donate blood or to their One Match program. So if you're signed up to either, it's best if you call and advise of your MS diagnosis and get your information updated.
I'm unsure of other countries, but I'm sure you could call and get information!
[Canadian Blood Services Eligibility] (https://www.blood.ca/en/blood/can-i-donate)
[The ABC's of Eligibility] (https://www.blood.ca/en/blood/abcs-eligibility)
19:01 UTC
Attended a seminar by Dr. Gavin Giovannoni today.
The MS Society and Biogen set up a seminar called 'Living with MS in the 21st Century' which was held at the Pasqua Hospital in Regina. I honestly wish I could listen to Dr. Giovannoni speak for hours. He is truly an intelligent and caring individual, and helpful to the MS Society, as MS is his primary interest.
He is so incredibly knowledgeable about MS and seems to really love his work.
If you're interested, he has a blog called 'BartsMS Blog'. He is currently trying to get pledges for his [MS Brain Health campaign launch] (http://www.msbrainhealth.org/pledge). He also has many different seminars available online, one which I posted [here] (https://www.youtube.com/watch?list=PLseEst8sYZkR-uEnYYA450cGSYrQLw00H&v=E01Yjr7xrtg) about disease modifying drugs. He is also very active on Twitter.
I do strongly suggest watching the video about DMT's, or visiting his blog.
22:30 UTC