Mollaret's Meningitis-together change can happen

[Azamber]

I am a proud member of MMA, Mollaret's Association. I am going to fight anyway I can to help raise awareness and make a difference in the lives that MM affects. This is just the beginning of my journey. I have so many unanswered questions as a sufferer, but hoping to learn from many others out there. Together, change can happen!

[Rodman21]

Good for you. Keep trying. Ive battled this for many, many years. Been inpatient many times, had my kidneys damaged form too much acyclovir, been rejected at ERs, told I was drug seeking, left to wait in the ER so long that I had seizures. Its a terrible plight that not getting herpes in the first place would cure. Ive had it so many times that my short term memory is affected and my ability to multi task. It took them 20 years to diagnose me correctly. So, I didn't receive the medication I needed for 20 years. Hence having untreated meningitis and being admitted numerous times for 8 and 10 day headaches with unstoppable vomiting. Once diagnosed going to the ERs was a joke, no doc had even heard of it. They looked at me and laughed sometimes.

Its about protected sex. My husband gave me mine a she was having an affair I didn't know about.

As you young folks move forward please teach protected sex. There is yet another reason to have protected sex that they never speak of. Mollarets. Im on disability now. Was a VP at a State Hospital Assoc., with a Masters degree. Im not of retirement age yet. But my inability to multitask and the number of times I get breakthrough headaches make it impossible for me to work. I went form a flourishing career to disability. I changes lives for sure. Please do fight.

[Azamber in reply to Rodman21]

I wish none of us had to battle to get the medical attention that we desperately need. It is difficult enough dealing with that part but now another struggle is what am I going to do to survive? I only have so much sick time. There isn't other income. My husband died three years ago and didn't have any life insurance or savings to help me. I hear how long and difficult it is to get disability.

This is happening way too much now and how can I hold on to my job having the difficulties that I do? I struggle with multi tasking, trying to remember things, inability to focus, can't get restful sleep, on and on. Worrying about all this has created this viscous consuming circle creating more anxiety and I think making me take so much longer to try to get rid of this head pain this time. I am writing things down now. I have a "to do" list at work, at home, notes to help me remember facts, calendars etc.

I'm sorry, starting to just ramble. I'm scared, not feeling well and not understanding why I am not feeling a lot better yet. Thank you for sharing your story with me. If you have any advice I'm listening

[Rodman21 in reply to Azamber]

Oh, Im so sorry sweetie. I was single with two children myself . I understand the no sick time issue. All my sick time went to my kids.

My disability took only 6 weeks to get. It was SS disability. So, basically my social security paid out early. Different than straight disability. Are you old enough to have earned SS?

With the right meds you should be able to get relief. The multi tasking is amazing how it fades away. Many of us are on . It is a disease that has proven to require disability many times over. Your medical records should be enough to support the disability. Do you carry the diagnosis? Have you been admitted before or have numerous ER visits? Been long term on anti virals? The I would try if I were you.

I went on the SS website to try and apply for early SS and was pushed to the disability side.

If your getting repeat bouts often you are not on the right meds. research has proven the right meds combo and does can prevent massive repeat breakthroughs. And there are different versions and combos of antivirals to try as well.

May I ask what you are on right now? Having had this so long, Ive learned a lot about the meds. Might be able to think it through with you.