mattcaron

Jodi-

we met w/ Dr. Shefner last wed and are meeting with him again this wednesday....hoping for a non-ALS diagnosis....he seems to know what he's talking about.....thanks for your help

matt

Also I agree with the Lyme diagnosis my husband tested negative with all the standard testing but positive last year with a more elaborate test with a doctor in Mt Kisco. He is currently on Rochephin IV daily for this and we have seen a slow progression in ALS, this drug is also in trial for ALS however with a trial you never know if you are getting the real thing or not here we are.

Please email me if you have any other questions or if I can help. Good luck with the clinic visit and your second opinion.

Jodi

I also agree about the Lyme Disease my husband tested negative on the standard testing but a year ago tested positive on a more elaborate test by a doctor in Mt Kisco and is currently being treated with Rochepin IV everyday for it, this is also in trial for ALS.

Please email me if you have an other questions would love to help if I can. Good luck with your clinic visit and second opinion.

Matt,
I just wanted to drop you a note regarding your wife, you and your children. My husband was diagnosed with bulbar ALS in August 2007 they said he had 18 months to 2years. Well he is still going and just finished/retired from teaching this year with a voice for 2 years. As some of the posts stated not everyone is the same so go into this with as much of a positive attitude as possible as it helps get you through the days and the kids feed off you and your wife generally. My kids have learned to deal very well when you are honest with them they are 14, 12, and 9.

Not sure which ALS CLinic you are getting into but if it is Syracuse we go there and they are wonderful. Dr. Shefner is a very compassionate doctor but very honest as well listens well and explains things well. His ALS Clinic staff is amazing as well and the support staff (ie: ALS Assoc, PT, OT social worker) are terrific.

DHelfer-

thank you for your suggestion,,,,,I'm writing it down on my "master sheet"....thanks

matt

Matt, I'm sorry to hear you have received a bad report regarding your wife. I am from Rochester, NY although we live in Orlando now. This area (NYS) is a hot bed for Lyme disease which often masquerades as many different types of systemic symptoms even those of ALS. My family and I have been treated for lyme for the past year after previously experiencing death-like symptoms unexplained by many doctors until we landed, by the grace of God, at a doctor here in Orlando that is Lyme literate and helping many. Please read my current posts and consider; let me know if you need more info. I don't know your wife's medical history, but I can tell you that my doctor told me today that anyone diagnosed with ALS or anyone unable to get a diagnosis for two years or more should definitely be tested by Igenex Labs in California for Lyme and all co-infections. Lyme, unlike ALS can be treated and is frequently the root cause of these symptoms. God bless.