i am 37 and have been fighting with mollaret's syndrome and meningitis and the nuerological after effects for a lifetime. they have not been able to give me a reason as of yet. i get severe migraines that last weeks not hours or days, i can not walk on most days and i have weekly periods where i am trapped in my own brain and have no control over my body. i am in constant pain and can get no help. i average 9 hospitalizations a year and thats if i stay home and try to ride out the storm. my body mimics the symptoms even when i do not have meningitis causing my brain to swell randomly. because most doctors have never heard of this i get very inadequate care and the places who know something about it wont see me without to alot of money. i am fighting with disability trying to get help but so far thats not working because their doctors know nothing either. it has caused me severe fibromyalgia and ephasia. i have photophobia almost constantly and my hearing and sight goes in and out with the pressure in my brain. after a lumbar puncture that went wrong and the hit my sciatic nerve and caused severe spasming...my body now mimics that because of the mollarets so i am literally trapped in h e double hockey sticks. i feel so alone in all of this and scared and i know at some point it will finish me off and i feel like im just waiting to die now.
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replied September 17th, 2012
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Hi. I just read your post and feel and enormous amount of compassion for you and the incredible situation you are in. I can relate to the debilitating symptoms you have had, but not to the degree you have. It sounds like you have had a very difficult journey and I am very empathic to your severe situation.
I am house bound and spend many days in bed from my illness, so I understand your frustration. I had meningitis 11 years ago & have never been the same. I was told I had Fibromyalgia when my symptoms did not go away. Initially, I had severe migraines every day for over a year, then eventually 6 per week, then 5 per week until a few years later they subsided. I threw up every day and the pain was unbearable. I too have photophobia. If I had not found a compassionate doctor, I wouldn't have wanted to live.
I lived with the Fibro symptoms for the last decade, always searching for more answers. I finally found a doctor who tested me for a co-infection of Lyme disease. I still have swelling in my brain & spine and am on a complicated protocol to treat the Lyme. The neurologic symptoms I had like tingling in my feet, burning feet, tremors, sweats, skin sensations are getting better with treatment. I am a long way from being back on my feet living like a normal person. I guess I'm telling you about my situation because many of your symptoms are similar to mine, except the part where you said you have no control over your body.
I am very concerned about your statement that you are trapped in your own mind. Does that mean you are not able to move physically, or do you mean you have a hard time sorting through your thoughts?
Have you been put on antivirals? The little I read about mollarets is that there are some that believe a viral activation is the trigger. Maybe they can help.
Do you have any support of family, friends or church? Is there anyone you can ask to help you find treatment that could be your health advocate? Could you contact your local hospital to find help with services you may need? Sometimes, they have great ideas beyond financial services that may be of help to you. For instance, help with your housekeeping or cooking meals.
One thought is that there is a neuro-immune research hospital in Nevada. I'd be happy to refer you the name in an email. It may be something to consider.
I can relate to your challenge and know it is easy to grow weary. But, I want to encourage you not to give up! There are days that I wonder if I will make it, just like you, but I know there is someone on this planet who can help you. You need to find the right doctor who will go the distance with you, and that is not an easy task. You may have to go from one type of doctor to another until someone can put the pieces together. Just don't give up!!! You may even want to look into universities that research neurologic disorders and email them for ideas on where you can get good treatment. Check meningitis foundations for help and see if there is financial help.
I assume you have been to a neurologist, right? Have you had MRIs done? What kind of tests have you had done? What about an infectious disease specialist?
I would think your local community health clinic might see you on a sliding financial scale. By me, some of the specialists rotate from their own clinic to the community clinic. That's the only way I will be able to see an infectious disease specialist.
Hope to hear from you. Hang in there and take small steps forward. The days that you can't do much, try not to beat yourself up. Set small goals to move forward to find answers. Please email me if I can be of help to you. Best wishes.
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