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 HERE.

WEBSITE FOR SO CAL SUPPORT GROUP

• The MG SoCal Support Group website is: http://mgsocalgroup.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/mgsocalgroup/resources/drug-cautions

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.