Group Meeting Summaries - MGSoCalGroup
Group Meeting Summaries - MGSoCalGroup
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December 14, 2024
December 14, 2024
MG So Cal Support Group Meeting Notes
MG So Cal Support Group Meeting Notes
MG DRUGS SIDE EFFECTS
Discussion of various MG drugs and their side effects: spoke about Repatha injectables, CellCept, Ritxan, and Ultimoris
MG STORY of one of today’s participants, Rich Schmittdiel, is posted on our website at: MY MG STORY BY RICH SCHMITTDIEL.
TRIALS
Andrea Divis, San Diego MG Support Group Leader spoke of the trials at the Neurology Center of Southern California and offered assistance if more information is needed about the trials, please feel free to contact her at mgsandiegogroup@gmail.com
Here’s the website for the center:
https://profoundresearch.io/trials/myasthenia-gravis
https://clinicaltrials.gov/study/NCT06414954?intr=NMD670
COUR Trial
Mike Stabile talked about the COUR Trial, an investigational drug, for people with Myasthenia Gravis. The study helps determine if CNP-106 can help improve your MG symptoms by reprogramming your immune system. More information can be found on our website at https://courpharma.com/our-clinical-trials/cnp-106-clinical-trial-myasthenia-gravis/
COUR webpage for myasthenia gravis: https://courpharma.com/our-clinical-trials/
MGFA PATIENT CONFERENCE 2025
The 2025 MGFA National Patient Conference is March 30, 2025 - April 1, 2025 at Arizona Grand Resort & Spa; 8000 South Arizona Grand E, Phoenix, AZ 85044. Members are interested in ride share and/or room sharing. If interested send email to: mgsocalgroup@gmail.com and blast email will be sent to members.
ENCOURAGEMENT
Lynn and Gary encourage themselves with a daily montra … “Acceptance and Gratitude” … learn to accept and grateful for learnings and all things.
NEXT MEETING:
Saturday, January 11, 2025 at 9:00 am - 11:00 am; host: Cindy Streltzov with Presenter: Milos, Medical Director at Cartesian Therapeutics
Milos, the medical director at Cartesian Therapeutics will present the results of their Phase 2b CAR-T cell therapy clinical trial and their plans for their Phase 3 trial which they anticipate happening during the first half of 2025. The second half of the meeting will be a check-in with everyone.
Meeting Topic Suggestions:
Walking Asymmetry with Apple Health Check coordinates with MyChart portal. It’s a great app to monitor walking style, format and is a preventative measure to ensure and assist MGers with walking. It can help avoid tripping by monitoring and alerting the user of dragging or droopy (lazy) feet.
Presenters for Car-T Cell and COUR Trial requested by members
Overview of drug treatments: COUR Trial, new and pipeline, current, upcoming, off-label treatments > Dr. Habib or Dr. Macwan
Have a doctor or pharmacist discuss Prednisone’s side effects, explanation of drug, why it affects the body, what are the alternative medications
Presentation of Myasthenia Gravis
Physical Therapy of MGers
Dental MG Specialist
JULY 14, 2024
JULY 14, 2024
MG SUPPORT GROUP MEETING
MG SUPPORT GROUP MEETING
NOTES
NOTES
NUTRITION FOR MGers
https://sites.google.com/view/socalmggroup/resources/nutrition-health-living-with-mg
WHAT STRATEGIES DO YOU USE FOR TRAVEL?
Prepare by lining up a MG doctor at destination or on ship
Have MG wallet card on hand
List of medications
Bring cooling or hating pad
HEADACHES vs.MIGRAINES
I get frequent headaches and curious if others do as well and likely remedies….some are caused by the medication or IVIG drip which patient is given Benadryl during treatment along with a very slow drip to reduce possible side effects .
A migraine is a headache that can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound.
HOW DO YOU IDENTIY A CRISIS?
Many discussed their experiences of personal crises and discussion covered range from the beginning of droopy eye to breathing difficulties. Most agreed that the the breathing effected their diaphragm making it difficult to breathe.
Move for MG - This is a new series of Youtube videos by Liz Plowman (sponsored by Alexion), a physical therapist (PT) based in Houston, Texas, who specializes in chronic pain conditions. She also is a person living with myasthenia gravis (MG). Episode 1 introduces Liz and how she became a PT. In Episode 2 Liz goes into detail about the similarities and differences between occupational and physical therapy. Additionally, she gives examples for which therapy is best as a solution to specific problems people with MG may face. You can find additional episodes, as they are added, on the More Than MG Youtube channel.
MG WALLET CARD
Download and complete the Emergency Alert Card in the event of an MG Crisis
https://myasthenia.org/Living-With-MG/MG-Emergency-Preparedness/Emergency-Medical-Card
Download the document:
June 8 meeting notes.pdfNutrition for MGers - is a vital component of healthcare and disease control; following a healthy eating plan can assist in reducing MG symptoms. What suggestions do members have about nutrition, meal planning, and protein drinks. Additional information on our website at mgsocalgroup.com https://sites.google.com/view/mgsocalgroup/resources/nutrition=
health-living-with-mg
Exercises for myasthenics - what exercises are good for MGers; Isometrics, bands, stretching
Headaches - I get them frequently curious if others do as well and the likely cause. My neuro said it could be the medication or simply a side effect of Diplopia.
Nausea and ideas to counter it, I get tummy upset often and assume it's from the heavy doses of Bactrim (antibiotic) i take daily, curious if others experience it as well.
Members Questions -
How do you identify a crisis?
At what point should you go to the hospital?
Are there alternatives to going to the hospital?
What is considered stable or unstable?
How do you improve your condition?
When are you considered in remission?
With drugs?
Without drugs?
What strategies do you use for travel?
How do you locate physician and hospital when traveling?
What Information do you need to relay to your general physician about your MG?
What are the pros and cons of participating in clinical trial studies.
Virtual Meeting Notes for September 9, 2023
Virtual Meeting Notes for September 9, 2023
MG SO CAL MAILBOX
• Starting July 15, 2023, the new mailbox for our group is: mgsocalgroup@gmail.com.
• All MG So Cal Support Group correspondence is sent to/from this mailbox.
• The support group leader will put the Members in the bcc: field to protect their email addresses, while Support Group Leaders (SGL) are in the cc: field and the mgsocalgroup@gmail.com address is in the To: field.
• The support group leader will input a header in the subject line for reader simplicity followed by a title or summary of the email; below are a few examples:
- RESEARCH: t(itle/summary inserted here)
- TOPIC: (title/summary inserted here)
- ARTICLE: ((title/summary inserted here)
- INFORMATION: (title/summary inserted here)
MONTHLY SUMMARY OF EMAILS
• Summary email of articles/links sent during the month will be sent the following
month. Latest summary is dated August 2023 and found on our website (removed).
WEBSITE FOR SO CAL SUPPORT GROUP
• The MG SoCal Support Group website is: calmggroup.com where you can find meeting notes, monthly summaries, research, MG Resources, announcements, member submissions, Drug cautions, meetings and much much more.
MGFA MyMG Mobile APP: Application is available for Apple and Android users
OPEN FLOOR DISCUSSIONS
DOUBLE VISION: Mestinon, prism glasses, sleep/rest, take your medicine, clean eating
TIPS FOR OCULAR MG
Blue beaded freezer eye mask, cold mask helps relieve eye twitching and tired eyelids. Wearing eye patch for an hour then switch to other eye. Do not wear more than 1 hour to avoid hurting eye. Prism glasses, opaque tape over one eyeglass lens, or business card placed under one eyeglass lens.
MEDICATIONS: List of drug interactions and meds not to take are on our website under Resources; link is: https://sites.google.com/view/socalmggroup/resources/drugs-cautionsinteractions-checker
RESTING: When you are resting, it is because the body is worn out. REMEMBER: Resting is NOT wasting time or the day doing nothing ... you are doing exactly what I needed - YOU ARE RECOVERING!!!
KAISER: For Kaiser patients needing neuromuscular MG specialist, contact the Nurse Advisor line.
NEUROLOGISTS: We can develop a list of Neurologists specializing in MG for our website. Please send the doctor’s name, location, medical group organization to mgsocalgroup@gmail.com.
HEALTHY EATING assists with autoimmune diseases, eat healthy, eat green, smoothies.
ADL APPLICATION & MG DOCTOR VISITS:
When meeting with current MD or new MD, bring copy of ADL form (Activity of Daily Living) with you to give to the doctor. Complete the form over the month not just the day before your visit. Also ask the doctor how many MG patients they are treating; It’s good for you or your advocate to know how many MG patients the doctor treats.
IVIgs:
Rystiggo recently approved by FDA July 2023. Vyvgard is administered through IVIg or injection.
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