This is my first time posting here. In a nut shell, my boyfriend has been having severe neuro problems which started about one year ago and is progessively getting worse. He has lost use of both of his hands and he cannot feel his legs and feet from his knees down. His left knee is painful as well as the tops of his hands. Lyme IGG was negative. EMG showed nerves are gone in both lower legs and feet and hands. MRI of brain and C-spine are unremarkable. All other blood work including CBC, HIV, TB, cyphilis (sp?), etc. are normal/negative. Doctors "believe" he has ALS/Lou Gerhig's Disease but are not 100% sure since there is no definitive test of ALS. Since Lyme IGG came up negative, they will not pursue Lyme further. He has been bitten by numerous ticks in past years. We live on 7.9 acres with horses, cats, and two dogs and ticks are just ridiculous around here. If anyone can recommend a doctor around the Jackson, NJ area who would take a deeper look into Lyme even though the IGG test is negative, I sure would appreciate it. Thank you.
Posted by mbroderick (Member # 5220) on :
Check your private messages You should also contact NJ support groups for recommendations and possibly additional names of docs. There's a link on the upper left side of this page.
[ 15. February 2006, 11:39 AM: Message edited by: mbroderick ]
Posted by Roxy's Run (Member # 8795) on :
Thank you Marian. I got your PM. Thank you so much. I will check into the New Jersey area. I didn't notice that before.
Linda
Posted by vitch (Member # 8094) on :
In Medical there is a thread called "This looks like a wonderful seminar." It discusses a few things you'd be interested in.
Posted by Mathias (Member # 5298) on :
There is no loss of sensation in ALS, you are working with a duck. You need a LLMD and there is a good one in Jackson.
Posted by Roxy's Run (Member # 8795) on :
Thank you Vitch for the link. I will check into it.
Mathias, could you elaborate on the loss of sensation thing and ALS? Denny says that he cannot feel the bottoms of his feet and that it feels like his legs from the knees down have "fallen asleep" and that the bottoms of feet feel like someone shot them with novacaine. When the doctors did the "prick" test on his feet, he did not feel most of the sharp pricks especially on his toes. Is this what you are referring to? ALS does not do this? I am just learning all of the details about ALS and Lyme right now, that is why I'm asking. Not much "detail" is said about ALS though which is frustrating. I do have to admit that I have received so much information and help from this site and I have received very little from the ALS sites. Thank you.
Linda
Posted by Andie333 (Member # 7370) on :
I had a loss of sensation in my feet as well as numbness.
I chased symptoms for years, going from one specialist to another, until I finally tested positive for Lyme.
Oh, Andie, thank you much. I am so happy that they FINALLY figured out it is Lyme. At least now they can treat you. Even though I myself do not suffer from this, I can see how terrible this disease is. Denny is really suffering and it is so hard for me to watch but I will not give up.
Linda
Posted by Mathias (Member # 5298) on :
ALS is also know as MND (motor neuron disease) meaning that it only effects the motor nerves, not the sensory nerves which we use for sensation/feeling things.
This is a key feature for making that diagnosis.
Lack of sensation, burning, tingling, etc. are symptoms that are inconsistent with an ALS diagnosis.
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You should also contact NJ support groups for recommendations and possibly additional names of docs. There's a link on the upper left side of this page.