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

Jennifer Doe commented on Haley's blog post Fighting the battle from afar.. In NZ. Advice for me?
"Welcome to the group. I also suffer from HSV outbreaks on my legs. I get them every two weeks like clock work. I hope the neurologist you see is helpful and can give you the answers you need. Keep us updated!"
yesterday
Haley posted a blog post

Fighting the battle from afar.. In NZ. Advice for me?

Hi all,I've been battling for the last 7 years with reoccurring meningitis, I'm 26. I've been admitted to hospital twice but spend most my outbreaks hiding in my room as I feel the hospital don't ever really seem to know or do much to help. Recently I've become a mother which makes hiding for days at a time impossible. I suffer from lesion outbreaks on my legs of HSV a lot. Have recently been referred to a neurologist to gain a better understanding of this condition and help me get my symptoms…See More
Thursday
Shaun liked Michelle Light Whittemore-Whitt's blog post SOCIAL SECURITY DISABILITY
Wednesday
Heather commented on Heather's blog post My Mollarets story from the uk!
"I forgot to add I had to give my career in childcare up because of being around the chicken pox and it was making me ill since I left there I've only had 2 bad attacks! My known triggers are chicken pox and coldsores! I'd like to know…"
Wednesday
Heather posted a blog post

My Mollarets story from the uk!

Hi everyone my name is Heather I live in milton keynes in England. I had my first attack in 2006 I was ill at home in bed thinking I had a cold went to hospital and the last thing I remember is fainting. 2 weeks later i wake up to learn I had viral menigitis as I'd left it so long to go hospital I made my self gravely ill! So I went home, got better until a year later I had an explosion of pain in my head, started being sick, couldn't look at the light and I was stiff from the top of my spine…See More
Wednesday
Profile IconHeather, Tina Haney, Haley and 2 more joined Mollaret's Meningitis Support Group
Tuesday
Carmen is now a member of Mollaret's Meningitis Support Group
Monday
Emma carson is now a member of Mollaret's Meningitis Support Group
May 15
Catherine Reynolds left a comment for Cynthia McCoy
"Thanks for friending me. I'm also battling two cancers so I'm not as active online anymore. Also lots to do with sequelae of a total of 157 days of meningitis, including 22 days of Meningo-encephalitis, so concentration is nil. But I…"
May 11
patricia "angie" Tucker replied to Rob's discussion 25 years
"Thank you Jennifer, I will look into this tomorrow goodnight Angie"
May 9
Cynthia McCoy replied to Rob's discussion Hsv researchers
"Unbelievable, how could he possibly say by just looking at you, that "no you didn't have the disease' none of what. I am so sad that healthcare professionals can be so awful. Sadly as a RN in the ER for…"
May 9
Michelle Light Whittemore-Whitt commented on Michelle Light Whittemore-Whitt's blog post SOCIAL SECURITY DISABILITY
"Cindy and Catherine, call me 254/931-1822.  I will email you the information and scan in my documents.  Get you an attorney, it will move faster I think.  Mine took 3 years.  Well almost that long."
May 8
Cynthia McCoy posted photos
May 8
Jennifer Doe replied to Rob's discussion 25 years
"Hi ladies The facebook page is Mollarets meningitis support group. It is not my page, but a member of this groups, Michaels. He is really great about administering the page. Please join. The link is in this group I think it is Michael Hrorer. Or…"
May 8
patricia "angie" Tucker replied to Rob's discussion 25 years
"Cynthia, I've been trying to say those exact words. But always ended up trying to explain the circumstances that lead me to the point of awareness like in your note, having to wait till the 11th hour before they see that you…"
May 8
Catherine Reynolds replied to Rob's discussion Hsv researchers
"Ha! 25 years ago I went to the top guy at NIH (Shwartz, maybe?). He was giving a speech so I approached after. I told him I had just had HSV 2 Meningo- encephalitis. He brushed me off like I had three heads -said " no you didn't, you…"
May 8

Forum

25 years

Started by Rob in Uncategorized. Last reply by patricia "angie" Tucker May 9. 27 Replies

I was diagnosed 25 years ago with this disease, later officially Mollaret's. It makes sense to me that it might be a new strain of HSV2 or drug resistant. In any case, it has been a nightmare and not…Continue

Hsv researchers

Started by Rob in Sample Title. Last reply by Cynthia McCoy May 9. 3 Replies

I am beginning to think the idea that HSV triggers a harsh reaction, but the result is hyperimmunity, may be correct. Has anyone tried contacting the top HSV researchers?

Shingles outbreak... What's next?

Started by Cheryl in Uncategorized. Last reply by Cynthia McCoy May 6. 7 Replies

Super curious to find out how many of us have had an outbreak of shingles prior to a MM episode. About 2 weeks ago I began to notice that my right upper groin area was numb, in just one spot. The…Continue

Tags: Shingles

Is it MM? Going To Cleveland Clinic Dec 11th!

Started by Tracy in Uncategorized. Last reply by Cynthia McCoy May 5. 1 Reply

Hi! I'm new to this..about a year ago someone asked me if I had been diag w MM! I hadn't ever heard of it, she gave me the info & it was like I was reading about myself! Ive been sick since I was…Continue

 

Photos

Loading…
  • Add Photos
  • View All

Videos

  • Add Videos
  • View All

Blog Posts

Fighting the battle from afar.. In NZ. Advice for me?

Posted by Haley on May 25, 2016 at 7:18pm 1 Comment

Hi all,

I've been battling for the last 7 years with reoccurring meningitis, I'm 26. I've been admitted to hospital twice but spend most my outbreaks hiding in my room as I feel the hospital don't ever really seem to know or do much to help. Recently I've become a mother which makes hiding for days at a time impossible. I suffer from lesion outbreaks on my legs of HSV a lot. Have recently been referred to a neurologist to gain a better understanding of this condition and help me get my… Continue

My Mollarets story from the uk!

Posted by Heather on May 24, 2016 at 8:20pm 1 Comment

Hi everyone my name is Heather I live in milton keynes in England. I had my first attack in 2006 I was ill at home in bed thinking I had a cold went to hospital and the last thing I remember is fainting. 2 weeks later i wake up to learn I had viral menigitis as I'd left it so long to go hospital I made my self gravely ill! So I went home, got better until a year later I had an explosion of pain in my head, started being sick, couldn't look at the light and I was stiff from the top of my spine… Continue

SOCIAL SECURITY DISABILITY

Posted by Michelle Light Whittemore-Whitt on May 1, 2016 at 9:00pm 5 Comments

I WON MY CASE!  After 3 long years I finally won my case you all!  And the best news is, the judge awarded it to me under Mollaret's Meningitis.  So we now have precedent over any future cases for Mollaret's sufferers!  Be encouraged my friends!  If I can help with anyone who is filing or fixing to file, please let me know.  My cell is 254/931-1822.

Michelle 

Advice appreciated

Posted by Saundra on April 24, 2016 at 6:00pm 3 Comments

I had my first bout of meningitis in Jan. '06. I was in the hospital for 3 days. Then in July '10 I got meningitis again. Was in the hospital for 5 days. I was so much worse the second time. They tested spinal fluid and said I had HSV2 meningitis. I had never previously been diagnosed with HSV2. No other outbreaks. I was sent home with a pic line with Acyclovir. It was awful, awful, awful. I couldn't remember what color my toothbrush or what street I lived on. They weren't sure my memory would… Continue
 
 
 

Members

© 2016   Created by Michelle Light Whittemore-Whitt.   Powered by

Badges  |  Report an Issue  |  Terms of Service