Support Hotline: (866) 737-5999 info@multiplesystematrophy.org

Multiple System Atrophy Local Support Group List | Compiled by the MSA Coalition

Sep 14, 2018 | Downloads | 25 comments

Multiple System Atrophy Local Support Group List | Compiled by the MSA Coalition

Multiple system trophy Local Support Group List | Compiled by the MSA Coalition – Updated April 2018

25 Comments

  1. K
    K on February 7, 2019 at 5:48 pm

    I am an RN. I want to know about further resources available for patients with MSA in the Boston, MA area. Please e-mail me helpful information concerning reputable support groups and whatnot that you may have.
    Thank you very much!
    K

  2. Lisea Spahr
    Lisea Spahr on December 26, 2019 at 3:58 pm

    Hi my name is Lisea. I am a 67 year old female who was diagnosed with MSA. I have had it for over a year.i would like to talk with someone who has it. To know what to expect in time. How to deal with family members, etc..

    Thank you, Lisea

    • Eddie
      Eddie on March 26, 2020 at 3:12 pm

      Msa i can talk to u i have it

      • Mary Ann Moss
        Mary Ann Moss on May 8, 2020 at 10:24 pm

        Lisea I was diagnosed with msa at age 67 December 16,2019..I also would like to to connect with another female who is dealing with MSA.

        • Pam Bower
          Pam Bower on May 30, 2020 at 6:30 pm

          Hi Mary Ann,

          We have a facebook group for patients to discuss concerns among themselves. You can join here, be sure to reply to the screening questions first and our admins will admit you:
          https://www.facebook.com/groups/MSAPatients/

          There is also a monthly webinar which you can join through your computer or on the phone. The facilitator Cathy Chapman has MSA herself and would be pleased to connect with you.

          Online Discussion webinar – For MSA Patients:
          People with MSA
          Meeting Time: 3rd Monday of each month at 8:00pm Eastern
          Meeting Link: https://attendee.gotowebinar.com/register/8182973838726361090
          Meeting Tel: (914) 614-3221; Access Code: 500-058-061
          Facilitator: Cathy Chapman, Phone 307-332-4144, email cec@wyoming.com

          You are also welcome to phone our support line. 866-737-5999

        • Connie
          Connie on December 8, 2020 at 1:51 am

          As a 68 year-old female diagnosed close to 2 months ago, though I am sure that earliest symptoms came years before, I would like to talk to you.

          • Kay Peters
            Kay Peters on April 7, 2021 at 10:20 pm

            Connie
            I was just diagnosed 1 month ago, I have had symptoms for some time but took 2 1/2 years to diagnose… I am from Minnesota
            and would love to connect.

  3. Marsha
    Marsha on February 28, 2020 at 1:21 pm

    Looking for support group in 15012 area code

    • MSA Coalition
      MSA Coalition on February 28, 2020 at 4:50 pm

      Have you looked at our resources page? In addition to the list of local support groups there are regional Facebook groups. We also recommend calling our support hotline at 866-737-5999. Our line is staffed by former MSA caregivers and can offer a communication source if nothing is available bear you,

      MSA Coalition Resource Page

    • debra holland
      debra holland on September 1, 2020 at 10:50 pm

      Can you have msa and every symptom but automaticalic hypertension?

      • Pam Bower
        Pam Bower on September 5, 2020 at 1:40 pm

        Hi Debra, Symptoms of autonomic failure must be present to receive a diagnosis of probable MSA. Autonomic failure also includes urinary issues so it is possible to only have urinary symptoms without severe low blood pressure. Only a qualified physician will be able to assess all the symptoms, rule out other causes and give the diagnosis. Contact us if you need a list of specialists near you. email: info@multiplesystematrophy.org toll-free – 1-866-737-5999

  4. Lindsay H Goldstein
    Lindsay H Goldstein on May 13, 2020 at 10:40 am

    Hi:
    My husband is in advanced stages of MSA though they still haven’t figures out one major component and we have been to Mayo, NIH, Cleveland Clinic, every Boston area hospital, DH and more. When he eats, he can’t move for up to 7 hours.
    Anyway, i know I could use some support lately. We are 10 years deep and I have noticed some cognitive components as of recent-he was in the hospital for an infection and developed sepsis. Are there groups for MSA end stages and also perhaps a group about frontal lobe dementia-stress and life or…that.
    THANKS
    Lindsay

    • Pam Bower
      Pam Bower on May 30, 2020 at 6:53 pm

      Hi Lindsay,

      You are welcome to join our online discussion groups. You can find links here. Every topic you can think of can be asked on these groups.

      https://www.multiplesystematrophy.org/msa-resources/

      There is also a webinar for care partners that you can join through your computer or phone.

      Online Discussion webinar – For MSA Care Partners:
      Care partners of People with MSA
      Meeting Time: 1st Monday of each month from 8:00pm – 9:00pm Eastern
      Meeting Link: https://www2.gotomeeting.com/register/977578139
      Meeting Tel: (415) 655-0060; Access Code: 950-759-636
      Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-3450

      You are also welcome to call our support line and speak to experienced MSA caregivers. 866-737-5999

  5. Katherine Nutter
    Katherine Nutter on May 19, 2020 at 5:23 pm

    I am looking for onine support groups for MSA. I would presume the format would be a chat, so people can ask questions and post comments. Got the diagnosis a week ago, sigh.

    • Pam Bower
      Pam Bower on May 30, 2020 at 6:48 pm

      Hi Katherine,

      We have a facebook group for patients to discuss concerns among themselves. You can join here, be sure to reply to the screening questions first and our admins will admit you:
      https://www.facebook.com/groups/MSAPatients/

      There is also a monthly webinar which you can join through your computer or on the phone. The facilitator Cathy Chapman has MSA herself.

      Online Discussion webinar – For MSA Patients:
      People with MSA
      Meeting Time: 3rd Monday of each month at 8:00pm Eastern
      Meeting Link: https://attendee.gotowebinar.com/register/8182973838726361090
      Meeting Tel: (914) 614-3221; Access Code: 500-058-061
      Facilitator: Cathy Chapman, Phone 307-332-4144, email cec@wyoming.com

      You are also welcome to phone our support line. 866-737-5999

  6. Mike
    Mike on June 6, 2020 at 1:15 am

    Has anyone heard about or tried CBD(cannabis) oil for MSA? I heard it might help with neurological problems.

    • Pam Bower
      Pam Bower on June 30, 2020 at 12:47 am

      Hi Mike,

      There is a new research article with a case report of one MSA patient who took cannabidiol. Email me for a personal copy of the article pbower@msacoalition.org

      Clinical Autonomic Research
      https://doi.org/10.1007/s10286-020-00704-2

      LETTER TO THE EDITOR
      Efects of self‑administered cannabidiol in a patient with multiple
      system atrophy
      Fabian Leys1
      · Cecilia Raccagni1
      · Victoria Sidorof1
      · Klaus Seppi1
      · Alessandra Fanciulli1
      · Gregor K. Wenning1
      Received: 8 June 2020 / Accepted: 10 June 2020
      © Springer-Verlag GmbH Germany, part of Springer Nature 2020

  7. Michelle Cheung
    Michelle Cheung on June 20, 2020 at 4:19 pm

    Hi, my mother has MSA and we are living in HK. There aren’t much support groups in HK that I can find but I really could use some support and help for my mum, and also for myself as a carer also. Are there any support groups that can help internationally?

  8. Tammy Brettman
    Tammy Brettman on January 8, 2021 at 6:05 pm

    Is there any MSA support groups near mel. Thank you

  9. WANDA L.
    WANDA L. on July 16, 2021 at 4:56 pm

    my husband has msa and has has it for about 5 years. he has developed and itch in his hair and sometimes his whole body. Is this a systoms of MSA

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