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

Joyce commented on Joyce's blog post MRI
"Hi Annie, No worries about not remembering my older post. Lots of people on here,each with their own stories. Add in our MM memory problems its hard to remember who said what ;) Not sure what you mean about pre treatment for the MRI and I don't…"
Sunday
Melanie Braido liked Michelle Light Whittemore-Whitt's blog post THE SITE HAS BEEN PAID IN FULL BY ITS MEMBERS!
Sunday
Annie commented on Joyce's blog post MRI
"Hi, Joyce, thanks for your message. It's much appreciated. Sorry for asking questions to which you already provided answers in previous posts, which I just realized. When my meningitis was "milder," and I use quotes because…"
Sunday
Joyce commented on Joyce's blog post MRI
"I am on antivirals now Annie. But for 25 years I was undiagnosed. I complained of on going episodes of extreme back pain, neck pain numbness etc. Was told it was basically all in my head. Finally last year after my 3rd severe…"
Sunday
Annie commented on Joyce's blog post MRI
"Joyce, thanks for updating. I think the neurologist is correct. May I ask how often your recurrences are and how they are treated? Do you not even take antivirals? I'd be dead or worse without antivirals, but even with antivirals I have at…"
Sunday
Joyce commented on Joyce's blog post MRI
"Saw a new neurologist. Not MS she says. She thinks the 25 years of untreated MM has damaged my nerves. And most likely have scar tissue and thickening in my spinal column. The virus can scar the meninges. Interesting as the ID doctor…"
Sunday
Melissa is now a member of Mollaret's Meningitis Support Group
Friday
Gwen O'Leary replied to Gwen O'Leary's discussion Drugs
"Rebound effect.  Didn't think of that...... :("
Thursday
Tracey Martel left a comment for Pricilla Mbangiwa
"Good luck today on your appointment. Keep me posted. Anything I can do let me know...Tracey"
Aug 25
Tracey Martel left a comment for Pricilla Mbangiwa
"Good luck today on your appointment. Keep me posted. Anything I can do let me know...Tracey"
Aug 25
Joyce replied to Gwen O'Leary's discussion Drugs
"I went from 1 gram to 2 grams a day a month ago. Headaches and dizziness final stopped.  Talk to your doctor before you go off them if you do. I read a study that when you go off the anti virals, many people have a episode of…"
Aug 25
Natalie Friedman replied to Gwen O'Leary's discussion Drugs
"I am going to continue taking them. Good luck!"
Aug 25
Gwen O'Leary replied to daniel's discussion memory is gone and going quickly
"My memory has never been stellar, but boy it has sure deteriorated over the last couple years.  I wonder too, how much damage has been done.  I'm fortunate and live in Canada - no medical bills.  But it's very scary...."
Aug 25
Gwen O'Leary replied to Gwen O'Leary's discussion Drugs
"Thank you.  I have an important event in September that I need to be healthy for, but I'm still toying with stopping them and seeing what happens after that.  I've never felt "right" since I started taking them you…"
Aug 25
Beatrice Klingman left a comment for Beatrice Klingman
"Yes I have had 3 episodes of MM in the last 3 years. All episodes took place in Alaska, and the ignorance caused me to be left alone in great pain. I suffered Kidney failure and was overdosed and died. I have Recently I moved home to La to be near…"
Aug 25
Tracey Martel left a comment for Beatrice Klingman
""Hi Beatrice, welcome to the group. Are you a sufferer of MM? If so look around the web site and if you have any question feel free to ask. Also tell us about you. Tracey""
Aug 25

Forum

Drugs

Started by Gwen O'Leary in Sample Title. Last reply by Gwen O'Leary on Thursday. 6 Replies

I've talked about this before.  I take 1000 mg of valocyclovir (valtrex) every single day of my life.  It has been one year since my last hospitalization, and I've had one mild episode inbetween.  I…Continue

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Gwen O'Leary Aug 25. 5 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

MRI

Started by Joyce in Uncategorized Aug 14. 0 Replies

""MRI shows a oblong, flare bright focus in the frontal deep white matter of my brain. Basically it means a lesion. Any one else have this?""Continue

Doctor who specializes in MM?

Started by Christine in Sample Title Aug 1. 0 Replies

Has anyone found or are being treated by a doctor, maybe a neuro-infection disease doctor, who specializes in this or even heard of it??!! Getting the proper treatment is frustrating and I am willing…Continue

 

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MRI

Posted by Joyce on August 15, 2014 at 10:42pm 5 Comments

“MRI shows a oblong, flare bright focus in the frontal deep white matter of my brain. Basically it means a lesion. Any one else have this show up on a MRI. Now they think I have MS but I think its just from the Mollaret's.

THE SITE HAS BEEN PAID IN FULL BY ITS MEMBERS!

Posted by Michelle Light Whittemore-Whitt on August 15, 2014 at 5:37pm 2 Comments

Hello everyone!  I hope this message finds you well today.  I wanted to thank everyone who has donated to the site.  In fact, we received two full payments from (2) members Tommy G and Jeremy D.  A couple of others donated $20 to the site.  Please don't send anymore money until I get a paypal acct set up and then for those who wish to donate towards the book they can do so.  I have much information to update you on regarding the book.  Its amazing technology we have at our finger tips…

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PLEASE NOTE WE MAY LOSE THE SUPPORT SITE.

Posted by Michelle Light Whittemore-Whitt on July 3, 2014 at 9:59pm 6 Comments

I hate to be the bearer of bad news, but we may have to cancel the support site.  I didn't get any responses from any members on helping this year with the payment of the site.  I have had great help the past two years and I really appreciate every one of you who helps with this site, not just for money but for responding to new members needs and getting the support out there.  I thank each and every one of you.  I am trying to get Ning to stop any deductions from my debit card as I have…

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July is the month we pay for the Ning support site.

Posted by Michelle Light Whittemore-Whitt on June 29, 2014 at 9:00am 1 Comment

If anyone would like to help keep this site up and running, please consider donating if you can.  They charge me around $250 a year for the site.  If you would like more information, please email me at findmynewtxhome@yahoo.com or call me at 254/931-1822.  I have sent a request in for an extension, I will let you know what they say.  Thank you and everyone have a blessed day.  Michelle Whittemore-Whitt

 
 
 

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