Mollaret's Meningitis Support Group

Daily Support Designed to HELP Mollaret's Meningitis Sufferers'

This syndrome is very RARE. WE are OUR best SOURCE of information. Chronic Headaches, photo & phonophobia, fibromyalgia, PAIN etc.

Latest Activity

Christina B replied to daniel's discussion memory is gone and going quickly
"Hi Lisa, I was wondering, do you take 800mg every four hours?  It seems like that is what is helpful to me but I don't know if it is too much.  "
Jan 16
Rhonda commented on Rhonda's blog post Shingles or Not?
"Thank you!!"
Jan 16
Michelle Light Whittemore-Whitt commented on Rhonda's blog post Shingles or Not?
Jan 15
Michelle Light Whittemore-Whitt commented on Rhonda's blog post Shingles or Not?
"Mollaret's Meningitis Assoc Support Group"
Jan 15
Rhonda commented on Rhonda's blog post Shingles or Not?
"Michelle - what is the exact name of the facebook group?  I am not sure if I found the right one.  Thank you."
Jan 13
Amanda Jayne Buckland posted photos
Jan 10
Michelle Light Whittemore-Whitt commented on Rhonda's blog post Shingles or Not?
"Rhonda it sounds just like what I get quite often and I've been told they are shingles.  They affect the nerves prior to break out which is a huge clue.  Please keep us posted.  Are you a member of the facebook group yet?  "
Jan 10
Rhonda posted a blog post

Shingles or Not?

Have had what I thought was shingles for the past week.  After a week of the skin sensations such as tingling, shooting pain from my right shoulder blade around to right front chest area I went to the doctor.  Told him I thought I had shingles.  He looked at the very small and few breakouts and he said he didn't think so. I explained that I was taking 800mg a day of Acyclovir suppressant therapy for MM and maybe I just didn't break out in a big way or it was still early.  He said this is not…See More
Jan 10
Michael Hrehor replied to Michael Hrehor's discussion Mollaret's Meningitis Association
"That sounds great.  Hopefully we will see you over on the Facebook support group!  We just filled all of our board positions, but are just getting started with plans for advocacy, fundraising, etc.  "
Jan 9
Michelle Ferguson replied to Michael Hrehor's discussion Mollaret's Meningitis Association
"Yes I would love to be a participant. Thank you so much for your hard work. I want to be part of the search for a solution."
Jan 9
Michelle Light Whittemore-Whitt replied to Dani's discussion Wondering if anyone had the same issues.
"Ok great.  We merged this site with Michael's today so all information will eventually be moved to Mollarets.org and the support group on facebook.  This way everyone who needs immediate information will be able to talk to someone…"
Jan 9
Dani replied to Dani's discussion Wondering if anyone had the same issues.
"The one Michael set up? Yes I am on there as well."
Jan 9
Michelle Light Whittemore-Whitt replied to Dani's discussion Wondering if anyone had the same issues.
"Dani, are you aware of the facebook site?  "
Jan 9
Michelle Light Whittemore-Whitt replied to Dani's discussion Wondering if anyone had the same issues.
"For some reason most of us have pretty good blood work.   They cannot determine everything in blood work like they seem to rely on and that is unfortunate.  But our joint issue has to do with the fluid surrounding the joints (synovial…"
Jan 9
Profile IconDebra McCoy and Mikki joined Mollaret's Meningitis Support Group
Jan 9
Dani replied to Dani's discussion Wondering if anyone had the same issues.
"I've been having increased joint pain, sometimes it hurts all the way to my bones it feels like, not just on the joints. But my pcp did lab work and said there wasn't anything showing in the blood work that would cause him to worry about…"
Jan 9

Forum

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Beatrice Klingman Jan 19. 17 Replies

Hello all, nice to meet others with the same problems. I have been diagnosed with molllarets by my doctor after my 5th hoapitalization. Every time i get a lumbar puncture, every time i get better in…Continue

Mollaret's Meningitis Association

Started by Michael Hrehor in Uncategorized. Last reply by Michael Hrehor Jan 9. 2 Replies

I am a part of the Facebook support group www.facebook.com/groups/MMSupportGroup.  We are working to create a nonprofit to raise funds to…Continue

Tags: Global, Genes, NORD, Association, Mollaret's

Wondering if anyone had the same issues.

Started by Dani in Uncategorized. Last reply by Michelle Light Whittemore-Whitt Jan 9. 9 Replies

Hello y'all. I'm Dani, just joined and am glad to see there are more people out there. When I was first diagnosed with MM I couldn't even talk to my regular pcp about it because they had no idea what…Continue

Has anyone had a prescription flare up their Mollaret's?

Started by Michael Hrehor in Uncategorized. Last reply by Cynthia McCoy Sep 1, 2016. 4 Replies

I started taking lamotrigine Friday to help as a mood stabalizer, but since then I have been fighting off a flare up and been having trouble sleeping.  I have a call into the psychiatrist about it,…Continue

Groups

 

This support group is now partnered with the Mollaret's Meningitis Association.  We will be updating all information in the future on the MMA website and other social media platforms.  They are in the process of creating a nonprofit for Mollaret's Meningitis patients to support advocacy, education, and research.  You can check them out at www.mollarets.org.

They also have a presence on the following social media platforms:

Facebook Public Page:  www.facebook.com/mollarets

Facebook Support Group:  https://www.facebook.com/groups/MMSupportGroup/

Twitter:  www.twitter.com/MM_Assoc

Instragram:  www.instagram.com/mollarets/

YouTube:  www.youtube.com/channel/UCnJtU6IP58flM-o7OZVNbCA

LinkedIn:  www.linkedin.com/company/mollaret%27s-meningitis-association

We hope you will join us as we work towards a cure for Mollaret's Meningitis.

Ning Support Group Administration and Mollaret's Meningitis Association Board of Directors

Now on Wikipedia
Mollaret's Meningitis Support Group.pdf

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Blog Posts

Shingles or Not?

Posted by Rhonda on January 10, 2017 at 10:04am 5 Comments

Have had what I thought was shingles for the past week.  After a week of the skin sensations such as tingling, shooting pain from my right shoulder blade around to right front chest area I went to the doctor.  Told him I thought I had shingles.  He looked at the very small and few breakouts and he said he didn't think so. I explained that I was taking 800mg a day of Acyclovir suppressant therapy for MM and maybe I just didn't break out in a big way or it was still early.  He said this is not…

Continue

New to this support group and newly diagnosed

Posted by Katrina on October 23, 2016 at 10:07pm 6 Comments

Hi All,

I'm from Melbourne Australia and I'm a 42 year old female. Two years ago I had my first bout of what I thought was a really bad flu, which I couldn't get out of bed for a few weeks. It passed yet came back about 6 months later, it left me concerned but thought that maybe I was just having a bad year. Skip to two years forward and these attacks kept coming back almost exactly six months apart, although they kept getting worse in severity and duration. I've had two this year…

Continue

Living with Mollaret's for 28 years

Posted by Kathy W. on August 27, 2016 at 9:44pm 4 Comments

I have been suffering from Mollaret’s Syndrome for twenty-eight years.  My first episode appeared three months after giving birth to my daughter.  I have been hospitalized so many times over the years that I have lost count.  Luckily, the last two times I became ill this year, I was able to manage the pain at home.

It has been a journey.  I went to the Mayo Clinic in 1992, and no one there was able to diagnose what I had.  It wasn’t until 2004 that it was diagnosed in Des Moines, Iowa…

Continue

An MM doc in my small town!!

Posted by Catherine Reynolds on August 17, 2016 at 8:39am 1 Comment

Attention all members near NC: an Infectious Diseases doctor recently moved from Winston-Salem to Salisbury (about 45 min north of Charlotte). He has and has had MM patients. He understood and believed everything I told him about my experiences since 1990. He was so nice, thorough, patient and he made me feel so relieved and vindicated for all those years of "you don't have HSV meningo-encephalitis, you'd be dead" - that from the late Dr. STephen Strauss, HSV guru at NIH, 1992. Years of being… Continue
 
 
 

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