MS Frontiers - Multiple Sclerosis Peer Support
Experienced based support from others living with MS
MS Live Interactive Peer Support Show
MS Live Interactive Peer Support Show
MS Live Interactive Peer Support Show
- Click here to register and join us for our virtual Christmas party Thursday, 12/24, at 11 Eastern.
- Join us every Tuesday and Thursday at 11:00 (EST) for MS Live - our live/interactive MS support show and chat session. Your participation in the live chat supports others while your host, Dulci Hill, talks about situations that are common in Multiple Sclerosis. Your questions, suggestions, and participation help us all. Subscribe to the Dulci Hill YouTube Channel and you'll be emailed the link to join just before the session. Another way to join in is to follow me on Facebook.
Types of Multiple Sclerosis
MS Live Interactive Peer Support Show
MS Live Interactive Peer Support Show
Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary attacks or episodes called relapses, flare-ups, or exacerbations that result in new symptoms.
- Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point.
- Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions
- Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery.
Managing MS Symptoms
MS Live Interactive Peer Support Show
Disease Modifying Medications
Handling the symptoms of MS doesn't have to be overwhelming. Here is a list of some MS symptoms. Click on the learn more button to get answers.
Pain circumstances: can occur in the back due to head nod or with eye movement
Tremor: can occur during precise movements, in the hands, or limbs
Muscular: cramping, difficulty walking, inability to rapidly change motions, involuntary movements, muscle paralysis, muscle rigidity, muscle weakness, problems with coordination, stiff muscles, clumsiness, muscle spasms, or overactive reflexes
Whole body: fatigue, dizziness, heat intolerance, poor balance, or vertigo
Sensory: pins and needles, abnormality of taste, reduced sensation of touch, or uncomfortable tingling and burning
Urinary: excessive urination at night, leaking of urine, persistent urge to urinate, or urinary retention
Visual: blurred vision, double vision, or vision loss
Sexual: erectile dysfunction or sexual dysfunction
Mood: anxiety or mood swings
Speech: difficulty speaking or slurred speech
Also common: constipation, depression, difficulty swallowing, difficulty thinking and understanding, flare, headache, heavy legs, numbness of face, rapid involuntary eye movement, sleep deprivation, tongue numbness, weakness, or difficulty raising the foot.
Disease Modifying Medications
Disease Modifying Medications
Disease Modifying Medications
MS is an individual chaotic disease specific to each person. The best chance to keep the disease dormant is to get on a disease modifying medication as early as possible. This will also improve one's odds of disease progression leading to disability. With that said, there is no way to know if the disease is dormant because of medications or that it is because of the course of that persons disease. Each person must make the decision to treat their disease based on individual preference towards risk/reward. MS can be dormant for many years but then rear its ugly head. (Multiple Sclerosis Medications - MS Frontiers )
DMD by effectiveness:
Copaxone 29%
Aubagio 31%
Avonex 33.20%
Rebif 33%
BetaSeron 34%
Mayzent (SPMS 35% disability prevention)
Plegridy 36%
Zinbryta 45%
Tecfidera 49%
Mavenclad 50%
Gilenya 54%
Lemtrada 55%
Novantrone 66%
Tysabri 68%
Rituxan & Ocrevus 70%
Facebook Support Groups
Disease Modifying Medications
Facebook Support Groups
MSFrontiers has 6 separate support groups to meet your personal needs. Each group is a closed group which requires you to request to join, answer a few question, then be added. We do this for the sake of your privacy as well as the safety and privacy of all members in the support group.
Our first group to join is MS Frontiers Medical Support; https://www.facebook.com/groups/MSFrontiers/ - We this group to ask specific questions about medically managing our MS or provide others with suggestions based on our own experience. The advice you get here should NEVER take the place of your doctor. We use this information to talk with our doctors about appropriate treatment specifically safe for us.
The next group that you'll want to join is MS Frontiers Personal Share; https://www.facebook.com/groups/MSFrontiersShare/ - We use this to share personal, emotional, and spiritual aspects of MS and receive support from fellow MSers.
Please post your non-medical questions, suggestions, and helpful articles to encourage your peers living with MS.
We have two groups that are geared towards a healthy life with MS. MS Frontiers Diet and Nutrition - https://www.facebook.com/groups/MSFrontiersDiet/
and MS Frontiers Exercise and Rehab - https://www.facebook.com/groups/MSFrontiersEXR/
Finally we have two exclusive groups only for people with advanced MS. Only those who have these two kinds of MS are allowed because things are shared that may never happen to the newly diagnosed and people with this advanced stage need support from others who have the same issues.
MS Frontiers Secondary Progressive; https://www.facebook.com/groups/MSFrontiersSP/ - Only for those people who have had relapsing remitting MS previously and are now in the secondary phase of MS.
MS Frontiers Primary Progressive; https://www.facebook.com/groups/MSFrontiersPP/ - Only for those who have been diagnosed with primary progressive MS which is characterized as never having had a remission. This is a very different disease path than relapsing remitting in that the disease course of PP is more gradual to the point of disability. Relapsing Remitting MS is characterized as having episodes (attacks) with remission and possible restoration between attacks. RR eventually can lead to SP in 10-20 years after onset.
Emotions and MS
Disease Modifying Medications
Facebook Support Groups
Ever wonder why those you seek support from don't understand Multiple Sclerosis nor can offer MS help no matter how hard you try? Multiple Sclerosis symptoms cannot be understood by those who have not actually experienced these symptoms. Here are a few reasons.
- The first is that they just can't fathom the symptom. Some of us will march our loved ones down to an MS experience booth where we make our loved ones wear marbled shoes, special glasses, and weighted vests in hopes they'll understand so they can make us feel a little better.
- The second is that they have enough going on in their own lives that they aren't able or willing to hear the details. It's not that they don't care, it's usually that they don't have the extra capacity to help. Its easy to get hurt by those who are supposed to care, but can't.
- The third is those who really don't care. These are the friends and family members that slowly disappear or avoid you. Some people can't handle sickness even if it may never get bad. The longer you live with MS, the more you find your support where it's best for all. This way your friends and family members don't have to be burdened with everything. Tune in to this video blog of how it's possible to manage life with MS.
Diet & Supplements for MS
Diet & Supplements for MS
Diet & Supplements for MS
The best Multiple Sclerosis Diets are the ones you have a chance of following. Look over these diets and get information on foods that can make you feel better. It often takes a start by slowly by adopting one healthy suggestion at a time. Click the button below to see the different diets for people with Multiple Sclerosis.