Hi Everyone! I have just spent a huge amount of time reading thru some posts and must say that as a newbie I am overwhelmed! I have gone from uplifted to comforted to so worried for some and finally to frightened. My journey went from misdiagnosed carpal tunnel surgery to ALS misdiagnosis within about 9 months...then by the Grace of God and a determined mom a Lyme literate dr was found in AL who is treating me for Lyme. I have had ups and downs but all with steady improvement and he is quite certain ALS is not a factor. All that brings me to my fear - that ALS and Lyme seem to go so well hand in hand. Is there documentation about this somewhere either proving or dis-proving? Lyme is such a nasty thing on its own that we don't need the nagging fear of ALS added to our fight!
Wow! Nothing like a newbie whining first post out! One good thing about the first dr saying ALS - I am bound and determined to prove him wrong and then perhaps dance a little dance at his retirement party!!
Stay strong, all, and know that you will all be in my thoughts and prayers.
Posted by Lymetoo (Member # 743) on :
Welcome Julie!! I'm so glad you found us. I second Tutu's advice to post in Medical. Please do a search for "ALS" in the subject line and you'll find tons of posts. Also, hunt up CaliforniaLyme (you'll find tons of posts by her). She used to head up a forum for Lyme/ALS'ers. Hopefully you really DON'T have any type of ALS presentation to your lyme as that really needs some wicked-intensive treatment!! But I'm glad to hear you've found a great LLMD! We look forward to seeing you 'round LOTS!
![[woohoo]](graemlins/woohoo.gif)
I have had ups and downs but all with steady improvement and he is quite certain ALS is not a factor. All that brings me to my fear - that ALS and Lyme seem to go so well hand in hand. Is there documentation about this somewhere either proving or dis-proving? Lyme is such a nasty thing on its own that we don't need the nagging fear of ALS added to our fight!