No Diagnosis

[kp111]

About 18 mos. ago my husband began experiencing pain in his left elbow and loss of sensation in his left hand. We were referred to a neurologist and orthopedic surgeon. While waiting for appts. and undergoing tests, he began losing use of the left hand. He underwent surgery for an impinged anterior interosseus nerve. During recovery, he began losing sensation in the right hand.  After losing complete use of the left hand, he was referred on where he underwent surgery for severe carpal tunnel in both hands and also for cubital tunnel on the left. His left hand is totally clawed and useless, the right has no sensation in the first three digits and he is beginning to see a loss of use.The pain in his left elbow has returned. He has undergone multiple nerve conduction, emg, mri of the legs, arms, neck, brachiel plexus, blood work, etc. According to Drs, we are now just waiting for the "disease to declare itself". After 18 months, we need answers, good or bad. The only thing mentioned recently is possibly ALS. Where do we go from here?

[doctornee]

Dear kp111

Thats sad ! A lot of tests and no diagnosis! I can understand your frustration.

What I woud like to know is whether apart from local tests and nerve conduction studies, MRI/CT Scan of brain and spine was done or not? This was not mentioned by you, and if not done, you could probably try this. The problem may be located higher up. Its difficult to comment without seeing the patient.

You have explained his condition well, but can you think of something else about his condition or any positive test that will help nail the diagnosis?

Best
Doctornee

[kp111]

He has not had brain scan, but upper spine. Last week he underwent nerve and muscle biopsies in the left arm.  The only other problem is the feeling of extreme cold in his hands that is creeping up his arm