Hello Starfish,
I'm so sorry about your mother's diagnosis. Just beginning to enter the world of ALS certainly turns our world upside down!
Is your consultation with the ALS neurologist for a second opinion? Will NCV and EMG be repeated? Try to get help interpreting the findings of NCV/EMG studies and ask whether the ALS is limb- or bulbar-onset. Ask where the deficits are being seen, on which side, etc.
After a preliminary diagnosis of bulbar-onset ALS in my husband by a neurologist here in Harrisonburg on March 28th, we went to UVA Neurology for a second opinion on April 14th. This was very helpful to us (if not also traumatic in having the preliminary diagnosis confirmed). We now are going to the Richard R. Dart ALS Clinic in Charlottesville where they are so very helpful. Join the local ALS Support Group. You will learn alot there. Here is how to get in touch with the one in Richmond:
Richmond ALS Resource Support Group
When: Second Tuesday of each month, 7:00PM to 9:00PM
Where: Trinity United Methodist Church, Mastin Room
903 Forest Avenue, Richmond, VA 23229
Contact: Sarah Stein, BSW, Patient Services Coordinator
1-866-348-3257 or
[email protected]
Ask the ALS neurologist on Thursday what you should be asking. You're entering a whole new strange world with a vocabulary all its own. It's hard to know what to ask since each PALS manifestation is different.
I wish you well on Thursday. We too go back to Charlottesville Thursday for consultation with an ALS pulmonologist, modified barium swallow, and PEG tube assessment. Like I said, it's a whole new world.
Take care. I'll be thinking of you and your family. Make sure to write down any questions that come to mind between now and Thursday's appointment. There's nothing worse than getting home and thinking "Oh darn it! I forgot to ask about...."
Good luck and keep us posted,
Jane