I wanted to say a quick hello. I am also a patient of dr. Mozaffar. I got my diagnosis on March 28. He originally wanted to see me again in two months but things are progressing so fast I moved my appt. up to this Tuesday. Don't know what I'm going to hear from him.
Are you in any clinical trials? I read he's conducting one of the dex trials. Sure would like to be part of that
Did you ever have a burning, churning type feeing in your chest? I've felt it before sporadically, but last night it moved in and has continued for hours. I have a bipap and the only other time this happened was when I used it for six hours straight the first nite. Now I only use it for a couple of hours during the day.
I notice changes of all kinds on a Daily basis: speech. Swallowing. Tongue. Jaw. Legs. Arms. Torso. Very frightening.
Do you think we are in the best of hands? Moazffar is so inaccessible. Nobody ever answers the phone and it can take days yo get a callback.
Thanks for the welcome! I too, have a ton of respect for Peg. I just met her recently, within the last two weeks. It sounds like our ALS diagnosis followed a similar path. I'm not familiar with the term leg onset, but I'm only five days into finding out I have ALS! This is the most surreal experience of my lifetime.
I hope you don't mind, but I was looking over your profile. I see you have two daughters recently married. My eldest daughter married in July 2010, while my younger daughter is about to graduate college. My daughter's wedding may have been one of the best days of my life! I can't wait for number two!
My name is Scott. I was just (3/14/12) re-diagnosed w/ALS. My previous diagnosis was MMN. Your friend Peg B. (now mine!) suggested suggested I contact you as you've walked down the same path three years ago and thought you may be able some insites. I met Peg on a MMN forum. She seems to be a great woman. My wife and I had been looking around for some info on MMN, as its such a rare disease when I found the forum. Peg started replying to some of my posts and turned me onto NaturallySpeaking, which I'm using right now.
When Peg found out that I've been rediagnosed with ALS, she suggested I contact you. Anyways, nice to meet you!
I'm going to poke around this website and see what it's all about. If you can, let me know any tips.
No, sand and my chair are mortal enemies! I'ts the sort of chair that is really only good on hard surfaces, but that's 99% of my use and so I'm more than happy with it. It has the mid wheel drive which is excellent for manouverability, but seems to get stuck on anything rough or slippery. I have another old chair, a much smaller unit with rear wheel drive, and I use it when I have to cross the lawn at home. I did see a beach chair on a trip last year; but it was manual. It had huge wheels, and was all aluminium so that with an attendant you could go right into the surf with it. That would be great I think. Sad thing is I am loosing my appetite for that sort of adventure a bit..... Are you doing well Tom? Good to hear from you.
Thank you for posting your pictures! I showed them to my husband. I think he needed to see them to help him see that he can continue to lead a full life, do things he has dreamed of doing, and be with his family. Thank you so much.
Hi Tom, getting the peg on the 13th...have to go in that day, get hooked up to IV for hydration and then just hang all day and all night with no food.....to really empty out stomach....then on the 14th I get the peg....pray that I heal up in a week, because I have to fly to fresno to get the Dex. drug....thank you friend.
How are you doing?