I found the following web sites about PLS. I suggest contacting the University of Nebraska Medical Center in Omaha for a referral to a doctor who is familiar with PLS. You could also google for “PLS support groups”. Support groups are a wonderful place to get referrals for doctors.
I don’t know anything about PLS, but all the other symptoms you list fit the profile for long-term Lyme disease. You say you don’t have it. I bet dollars to dough-nuts, they gave you an ELISA blood test, which is known to have a very high false negative rate. I suggest you do some reading on some of the following websites, and see if it resonates with you. If so, I seriously suggest that you find an ILADS-affiliated Lyme specialist, and be evaluated not only for Lyme but other tick-borne infections (many of which can also cause the symptoms you describe.) Good luck
Good sources of info about Lyme disease:http://www.canlyme.comhttp://www.lymenet.orghttp://www.lymeinfo.nethttp://www.lymediseaseassociation.orghttp://www.ilads.orghttp://www.betterhealthguy.comhttp://www.publichealthalert.comhttp://www.freewebs.com/teenswithlymehttp://www.lymetimes.org
Get into a good Medical Center’s Neurology Department as an outpatient and tell them you have PLS.. It’s definitely rare enough to get your case presented at Grand Rounds, and you may get more answers.To me, it also sounds like a demyelinating pathology.
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3 Responses for "Can Anyone Tell Me Anything About Pls/primary Lateral Sclerosis?"
I found the following web sites about PLS. I suggest contacting the University of Nebraska Medical Center in Omaha for a referral to a doctor who is familiar with PLS. You could also google for “PLS support groups”. Support groups are a wonderful place to get referrals for doctors.
I don’t know anything about PLS, but all the other symptoms you list fit the profile for long-term Lyme disease. You say you don’t have it. I bet dollars to dough-nuts, they gave you an ELISA blood test, which is known to have a very high false negative rate. I suggest you do some reading on some of the following websites, and see if it resonates with you. If so, I seriously suggest that you find an ILADS-affiliated Lyme specialist, and be evaluated not only for Lyme but other tick-borne infections (many of which can also cause the symptoms you describe.) Good luck
Good sources of info about Lyme disease:http://www.canlyme.comhttp://www.lymenet.orghttp://www.lymeinfo.nethttp://www.lymediseaseassociation.orghttp://www.ilads.orghttp://www.betterhealthguy.comhttp://www.publichealthalert.comhttp://www.freewebs.com/teenswithlymehttp://www.lymetimes.org
Get into a good Medical Center’s Neurology Department as an outpatient and tell them you have PLS.. It’s definitely rare enough to get your case presented at Grand Rounds, and you may get more answers.To me, it also sounds like a demyelinating pathology.
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