Frustration and Mollaret's

[Azamber]

Hi, I am currently recovering from my fith hospitalization due to Mollarets disease. I was treated so poorly at a local hospital here in Arizona when I went there this past 4th of July. I had severe pain, was vomiting, fever, dizziness, extreme sensitivity to light, stiffness to neck, but could flex it some. I was given the typical Benedetto compazine cocktail after waiting for an hour for the dr to say it was okay. This Dr treated me as though I was exaggerating the pain and was saying my symptoms could match so many medical causes. This same dr caused more anxiety by not performing the LB procedure without me yelling for him to stop because it felt like the needle hit a nerve. This Dr kept saying I'm just pressing with my thumb! He stated he would wait and try again under fluoroscopy. I was shivering so much due to a fever but no one would give me a blanket. The nurse just said I'm sorry we can't, you have a fever! So laying there, thinking about this arrogant Dr that would soon be attempting another LB, still begging for something stronger for pain, and being ignored, I left the hospital, with of course someone who drove. I layed in my bed for two days not wanting to return to that hospital that just exacerbated my emotional and physical state without eating, drinking and finally my boyfriend just came and took me to a different hospital. I was in no shape to argue let alone make any decision. Now this hospital was the total opposite, Dignity health, part of St. Joseph's hospital for those of you who live here. Why is it so difficult to receive the prompt medical care and find a Dr. that is knowledgeable in this area? I fear for the next time.

[Dreamgnome]

I founded the Mollaret's Meningitis Association, mollarets.org, specifically because this is the experience of so many with Mollaret's Meningitis. We have recently put a medical advisory board in place, and will be announcing other positions being filled shortly. We have an aggressive list of projects to work towards more research in this area, and creating awareness in the medical community to hopefully minimize these experiences in the future.

You can sign up to be a member of the organization, and get on our email list, by going to membership.mollarets.org.

You can also join our growing support group of 300+ on Facebook at Facebook.com/groups/MMSuppo....

I hope we see you on the support group to get help from others dealing with this same disease.

Michael

[Azamber in reply to Dreamgnome]

Thank you Michael!

[Rodman21]

HI. I've had Mollaret's for over 40 years now. Have your primary write up a letter to take with you everywhere you go with the DX, and the meds you need. Topamax is wonderful, Acyclovir of course, anti nausea, anti anxiety and pain medication. Then you need some to take home. I receive 140 pain pills a month and suppository anti nausea and take Topimax twice daily. I am rarely in the ER now. I can treat at home. With repeated bouts of this it affects ones memory in a huge way. It is herpes on your brain It leaves scar tissue.

I am now a vegan, made a huge difference, exercise daily and you must get enough sleep. No booze ever and one cup of coffee a day, no more. Lots of water too.

If you follow this your life will normalize. Trust me. Those of us with M, develop horrific migraines over time as our body becomes used to having horrific headaches for days. Not all of your HA's will be M. I have had hundreds of spinal taps only to learn that I now have 10 day migraines now.

2 Neuros who specialize in M said it is very common to develop migraines. So, take care of yourself

[Azamber in reply to Rodman21]

Thank you