This past April, after two days of fever, I slipped into a 10-day coma. After being flown from Maine to Massachusetts General Hospital in Boston I was diagnosed with nonspecific viral encephalitis.
Long story very much shortened, I recovered amazingly quickly. Far too quickly for my above diagnose to be completely correct.
(Viral: 1 day coma = ~one week rehab)
I left rehab in 3 and a half weeks having arrived a quadriplegic.
I am a student of biological psychology, writing on this topic for my senior thesis at Bates College, and I'm looking for some help.
Because autoimmune diseases are almost universally treated with steroids (immune suppressants), doctors cannot treat for an autoimmune disease if an infection cannot be entirely ruled out. A full 50% of viral encephalitis cases are diagnosed as "nonspecific," meaning that there is likely some unidentifiable virus doing the damage. However, I believe that of these 50% of cases, there is likely a subset of undiagnosed autoimmune encephalitis. If I can find that subset by linking individuals along criteria having a lot to do with recovery and then other aspects as well, then perhaps medical professionals will eventually be able to treat people with this disease better and more quickly.
Right now, I'm just putting myself out there to connect with anyone who might be interested in filling out a survey. Anyone one at all who has had any form of encephalitis is welcome.
Feel free to contact me for more information at drosenz2@bates.edu or through inspire.com.
Thank you all very much,
.Dan Rosenzweig
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Viral and Autoimmune E Study. Conducted by a survivor.
- By Dan_
- Posted November 3, 2009 at 11:23 am · 8 replies
- In Diagnosis of encephalitis
- Shared with the public
Explore topics in this discussion:
Autoimmune diseases Encephalitis Seizures West nile virus Fever
8 replies
- Oldest first
- Newest first
- By misseaster13
- Posted November 3, 2009 at 4:38 pm
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hello dan, i care for my husband he is the one who had hse but i experienced the symptoms he cannot remember,i feel that doctors would benefit a lot from first hand experiences being related to them,as you say its usually a long story i can tell you mine if you wish, or if it will help you in anyway just let me know,
- By Dan_
- Posted November 3, 2009 at 4:44 pm
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Thanks for your response. Keep an eye out for a posting regarding my survey.
I'll also post a link here.
Likely will not be available until December.
- By MichelleN
- Posted November 3, 2009 at 9:01 pm
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I don't remember much about the 2nd year after E, but the first is gone so I'll answer the survey if I can. If not I'll ask my family to do it.
Michelle
- By cherrienb
- Posted November 12, 2009 at 8:21 am
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Hi Dan,
My 16 year old son had E 4 years ago, undiagnosed and assumed viral. I, too, would be willing to help with your study, working with him to fill in the blanks of things he can't remember. Good luck!
- By IngridGuerci
- Posted November 12, 2009 at 10:12 am
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Add me to your list. I had HSE in December of 1995 but unlike most of the people here, I was treated right away after the doc saw me in the ER and then diagnosed about a day and a half after that, when my test results came back.
Ingrid
- By one_lil_red_hen
- Posted November 12, 2009 at 10:55 pm
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Dan, you say you're interested in anyone who has had any type of E. Does that include West Nile Virus encephalitis? How about bacterial encephalitis?
~hen
- By Dan_
- Posted November 13, 2009 at 3:04 pm
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Any viral type is ok. Bacterial are fine and will help for comparisons. But I am looking for a group within the nonspecific viral subset that share certain Sx and recovery related aspects.
- By welshlady
- Posted yesterday at 9:48 pm
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Hi Dan
I am new here and this is my very first posting to the discussion group. My beautiful, wonderful, darling son was diagnosed with E in February 09. He was hospitalised for 8 weeks during which time he had 2 generalized tonic-clonic seizures which resulted in him being admitted to intensive care. He was in a coma, intubated and ventilated. I was beside myself with fear and grief and thought my world had come to an end. There is not a day goes by that I don't thank the lord for saving my son and wrapping his healing arms around him and slowly returning him to full health.
If I can help in any way, I would be delighted to complete a survey for you based on my observations of him. I read with interest your comment, "doctors cannot treat for an autoimmune disease if an infection cannot be entirely ruled out." My son is taking steroids together with other medication for auto immune encephalitis despite his medical notes stating, "no evidence found of an infectious encephalitis."
Dan, I wonder if you would be so kind as to advise me where you had this information from i.e."doctors cannot treat for an autoimmune disease if an infection cannot be entirely ruled out," so that I can ask the question of the Consultant Neurologist who is treating him?
Many thanks and good luck with your research.
Karen
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