Mother recently diagnosed w/ALS

[stopALS]

Hi Everyone,

Newbie to this great site (although I have reviewed content here quite a bit)

My mother (72 years young) has recently been diagnosed with ALS. My father was with her at the time of this diagnosis. I will be attending the follow-up meetings with her doctors. She is scheduled (6/13/05) to see roughly 5-6 doctors that day to educate/prepare her for her affliction.

Her hospital is the Leahy clinic Bedford Mass.----She has seen roughly 4-5 different doctors (2 neurologists) there but we only have 1 (collective) opinion from Leahy.

Wondering what intelligent/informed questions relative to testing (or otherwise) to ask the doctors so that I can be assured that we have correctly diagnosed this disease. I would like to be as specific as possible with test names that have been done as well as tests that may have been overlooked.
I've read where Lyme disease (as well as other disease's) symptoms can emulate ALS symptoms.

I appologise for the length of this post --- but do appreciate any help/advise for these early stages of diagnosis.

 

[Al]

Sorry about your mom's luck. A normal range of tests would include a MRI. Some but not all ALS patients show some changes in the MRI. An EMG or electromyographie should be done as well as nerve conduction studies to rule out motor neuropathies. Blood work is usually done and could include the Lyme test but from what I have read on the forum here there are only a couple of dependable labs in the US to do the test and it can give a lot of false negatives.
If you have been reading the posts for a while you will be aware that there is no single difinitive test for ALS. It is a disease of exclusion. When they can't pin anything else down, most often it will be ALS they come up with. In the early stages it is difficult to diagnose.
Hope this helps and Good Luck. Keep us informed of what you find out. We care.

 

[stopALS]

Thanks Al,

Mom had the MRI,EMG,Blood work a few times. She said it was the EMG test that confirmed the diagnosis.

Going to research as much information as possible between now and Monday so I can be prepared for all these meetings. I will report back any new info.

Thanks and God Bless