new member, waiting on diagnosed for husband

[APC]

Hi everyone. I have emailed some of you. Learning how to navigate a forum. Never done this before. Any insight of what test to have done for accurate diagnosed would be appreciated. I feel at the mercy of all md's. This waiting game is brutal. Thank God for the sun today. We really need the support no matter what we find out. We have been truly blessed.

 

[jghope]

diagnosis

I am so sorry to hear your situation. My husband was diagnosed in September with ALS after 2 years of miss diagnosis'. Finally we went to the Cleveland Clinic's ALS clinic and Steve had several tests done- basically to rule any other possible illness there could be. He had a lumbar puncture, extensive EMG, blood work out the ying yang and a special CT that was done according to his ALS specialist's "protocol" for head CT's. Everything was negative and his symptoms did correlate with an ALS diagnosis. It is a waiting game and you do feel at the mercy of others. We were relieved to get a diagnosis (even though it stinks) because all the tests and work up leading up to that point was exhausting.
We enjoy everday together- some days are worse than others, but we keep each other going. I am sure things will get worse, but you can only handle a day at a time.
Our thoughts and prayers are with you- you are not alone
Jenny

 

[zac111]

hi jenny i was wondering if i can ask how did they give him a diagnosed with a clean emg.