Still looking for answers...

[1fanatic]

Well, we've been to UCLA twice now. First time mom's physical exam was "normal," so she was scheduled for further EMG testing. Well, those results were again not significant so they were taken under "review. So, needless to say, she still doesn't have a confirmed diagnosis and I just got her an appointment for the end of July. However, since April she says she can feel her body changing and the life draining out of her. I see no real significant changes in her other than her gait is really heavy and SOMETIMES awkward. She says that her hands, arms and face are sometimes numb and she is now pinching herself (and leaving bruises), and slapping her face just to prove her point.

She refuses to take any type of antidepressants until she gets a diagnosis; she won't go to physical therapy because she says its for muscle therapy and she is having nerve damage.

I guess the reason I am writing is that I am looking for some kind of a reference point, someone to tell me that she is not losing her mind; to tell me to be patient; to help me help her.

I did make her an appointment with her regular neurologist (not the ALS expert), hopefully he can talk to her, either put her at ease until the end of July or suggest something for her to do in the interim.

If anyone out there can understand what she is going through (and maybe me), I would appreciate hearing from you. Help me make this easier for her. She is so sad and feels so helpless. This waiting business is B.S.

Thanks!

 

[patricia1]

sorry to hear about your mom

I have a problem with the numbness .Thats not a ALS symptom .


Has she had a MRI?

l would continue to follow up with the neurologist. or get another opinion

Patricia

 

[momap53]

Waiting through all the testing can be very frustrating. Perhaps your Mom could try the antidepressant on a temporary basis to help her through this most difficult period in her life.

 

[HelenL]

call the neuro's office once a week to see if they've had any cancellations... you may be able to get in sooner if you do. Obviously the more pleasant you are with the office staff, the harder they'll try to accommodate you.

Does your Mom think she has ALS? Sensory issues are not part of it, its the motor neurons that affect movement, not the sensory neurons (sorry I have this titled wrong, but you get my drift) that effect feeling. Is she pinching herself because of "pins and needles" feeling?

Good luck, and I agree that antidepressants may help smooth over the time while you're waiting.