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

Misty replied to daniel's discussion memory is gone and going quickly
"Tracey, Thank you so much for this information. I have realized in the year and 2 months of being diagnosed that is the experience. I haven't been able to work since April and applied for SS. Hopefully that will go thru soon along with…"
Sunday
pat riggs replied to Ken DuBose's discussion Can MM cause chronic pain?
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Saturday
Kathleen Adams replied to Ken DuBose's discussion Can MM cause chronic pain?
"It's a pleasure to meet you as well! And thank you again so much for the information. Even though I am very active (and have been the last several years) I sometimes feel like maybe I overdid it, and that is the reason for the pain. But it just…"
Saturday
pat riggs replied to Ken DuBose's discussion Can MM cause chronic pain?
"Dr. Mark Stillwell is his name and he is one of the top infectious disease specialists in the country.  He is in Bentonville, not Rogers, I get those towns mixed up sometimes.  It will take about a month to get in to see him as he has so…"
Saturday
Kathleen Adams replied to Ken DuBose's discussion Can MM cause chronic pain?
"Thank you, Pat, for your reply. I meant to say spurts of pain (auto correct lol); however, I am very active with running, crossfit, and have ran a couple marathons myself :-) I had no idea there was medication you could take for MM -- would you take…"
Saturday
pat riggs replied to Ken DuBose's discussion Can MM cause chronic pain?
"I went to a top specialist on MM in Rogers, AR.  I talked to him about headaches, inflammation, bodyaches.  He said that most of these issues are not related to MM.  He said that there can be an undertow of MM when medications are not…"
Saturday
Tracey Martel replied to daniel's discussion memory is gone and going quickly
"Hi Daniel and Misty I was diagnosed with MM in 1986. I've had so many episodes I lost count. After I turned 40 it got worse. My short term memory is terrible. I now have to write everything on the calender. I had to stop working 3 years ago and…"
Friday
Kathleen Adams replied to Ken DuBose's discussion Can MM cause chronic pain?
"Thank you so much for this site -- this information makes me feel so much better and that the sports of pain and headaches, as well as tingling and vision issues, is not all in my head. I have a follow up soon at the end of the month and will be…"
Friday
Misty liked Tracey Martel's blog post MM and Social security
Jul 16
Misty replied to daniel's discussion memory is gone and going quickly
"Hello Daniel, I'm Misty and too was recently diagnosed with MM and have had 10 reoccurances since 4/13. In April Dr stated meningitis and then other times diagnosises all over the board some included meningitis but others simply headaches as…"
Jul 16
daniel posted a discussion

memory is gone and going quickly

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 about a week. Beaides the first time when i couldnt stand for a month. I am wondering about memory problems linked to this. As well as are any of you on disability? The hospital bills are now beyond my ability to pay. Do any od you have a prognosis? Will this eventually kill me? I know its morbid…See More
Jul 16
daniel posted a status
"Hello i just found this site... i hope it doesnt go down. I have had spinal menningitis 5 times now. Only recently have i been diagnosed mol"
Jul 16
Misty left a comment for Misty
"Hello All! Thank you for the acceptance to this group. I have been recently diagnosed with Mollaretts and by doctors that have no clue to what it entails. This has been so helpful with just briefly looking at a few post. Thanks again."
Jul 16
Kathleen Adams posted a photo
Jul 16
Profile IconMisty, Jeremy, daniel and 2 more joined Mollaret's Meningitis Support Group
Jul 16
Catherine Reynolds commented on Kenneth Kailey's blog post Quick update
"Kenneth, that is great news about your diet and exercise. It is so hard for many of us to overcome the fatigue and fog to start exercising but your report of feeling that much better is very heartening. As some of us get older, we find youth…"
Jul 14

Forum

memory is gone and going quickly

Started by daniel in Sample Title. Last reply by Misty on Sunday. 3 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

Can MM cause chronic pain?

Started by Ken DuBose in Uncategorized. Last reply by pat riggs on Saturday. 21 Replies

I first contracted MM about 20 years ago.  It took months to diagnoise and I almost died before a good neurologist figured it out.  They sent my spinal fluid to the CDC and it was confirmed that it…Continue

What do you tell people?

Started by Gwen O'Leary in Sample Title. Last reply by Kenneth Kailey Jun 29. 4 Replies

I'm a patient at the hospital I work at, so of course coworkers who treat me know what's up; I hope they practice confidentiality.  What I'm wondering is what you tell people who ask why you keep…Continue

Northwest Wind System

Started by Sheryl Martin in Sample Title. Last reply by tammy j jennings May 3. 1 Reply

I just had another flare of my MM. I have been paying attention to the weather system (just because I have noticed by accident that I get a flare whenever we have a storm system coming from the…Continue

 

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Blog Posts

PLEASE NOTE WE MAY LOSE THE SUPPORT SITE.

Posted by Michelle Light Whittemore-Whitt on July 3, 2014 at 9:59pm 2 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

Is Valtrex available in liquid form?

Posted by Darla on May 28, 2014 at 11:34pm 2 Comments

I will be having surgery soon & will need to be on a liquid diet (including meds for part of it)

Do yall know of liquid options for keeping the Monster away?

Quick update

Posted by Kenneth Kailey on May 26, 2014 at 10:24pm 1 Comment

Just a quick update to let everyone know what is going on.



The Meningitis hangover seems to be over for now. The steroids helped a lot and even though the joint pain came back a little after I stopped taking it, the pain cleared up on it's own in a few days. The headaches are manageable again and I am back to my normal routine - working outside, making knives ect.



Of far more concern was the results of the "yearly" testing done my doctor that coincided with this whole…

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