SueG

Hi Sue-
I happened to find a post of yours in which you explain the starting of your symptoms. I couldn't help but notice a similarity to what I am currently experiencing. I hope you won't mind if I ask you some more questions about your initial symptoms. You mentioned lack of dexterity in one hand and affected speech. To what degree was your hand affected at first? Did you have any pain at all in your wrist or small joints in that hand? The initial weakness was it related to moving your fingers laterally, involving all fingers or one at first. The speech problem was it something that started with an odd feeling at first that only you noticed? Any tingling at the tip of your tongue? How did they determine it was ALS related? And finally, how were you diagnosed in terms on tests, EMG?
Sorry for asking so many questions. I have been dealing with strange neurological symptoms for months but so far the neuro cant figure out what it is.
Thank you very much
Alfonso

Thanks for your reply. We haven't met anyone with ALS in ME yet, so it feels good to connect. M went to Lahey twice in Nov and saw Royden Jones. He was impressed, and will continue to go there. Dr. Jones ordered further tests, since M's progression is not typical. No results yet.
Re insurance, I can only say that our insurance (Anthem) has so far covered everything because (to my understanding) the local neuro made the referral to the clinic there. I don't know if you are seeking the out of state services on your own or whether a provider made the referral, but perhaps that makes some difference?
We also have two daughters, ages 18 and 21, who will be home from college at the end of this week, and we are so looking forward to it. Even though M's health is still strong, every day has become more precious since this diagnosis. Hope your family enjoys the holidays.

Love your photo! Great smile! I will try to connect with you so we can introduce ourselves a bit more. I have a whole day of nothing to do, yippee! So will try to catch up with my pals.
But first things first:COFFEE!

PS Just noticed you were diagnosed in August, me too! My friend Kirk calls us august buddies.

Hi Sue, just wanted to say i am thinking and praying for you regarding your loss of speech. You may try recording on days that you have mornings free, so you are rested. I find that i slur most in the evenings when i am tired. Also, if you are still understandable to your family and friends, do take the time to make a recording of what is in your heart for each of them. It will mean alot to them ! Feeel free to message me anytime if you need some support as you go thru this loss.
love and hugs

Hi Sue, I am also from Maine. My husband was diagnosed in Feb 10. Has had symptoms since Dec 08. I wanted to ask whether you had connected with the ALS foundation support groups in Maine or found any kinds of helpful local support? Thanks so much for any support you can offer. I am so sorry for your Dx, but inspired by your outlook. Also, who are you seeing at LAhey? My hubby has an appointment in November with Royden Jones there...

Hi Sue, welcome to the forum. I appreciate your words on the thread about slurred speech. I thought we might be friends, since we are struggling with speech problems. It's nice to support one another.
Your loving sister,
Sequoia