I'm so glad that you feel that way... it makes all the difference in the world when you know that answers.... good or bad... will soon be coming. I'll be seeing Dr. Chad this Fri at the ALS clinic at UMass. Hope you had a good Easter!
Hi Henny Penny, that's good news about the appt getting moved to this week, hoping you get some good answers. About your legs, are you doing range of motion exercises when you can? Hopefully the heaviness in you legs is just due to your cold... but if you can try a magnesium bath, that may help. Do you take creatine? I notice that when I don't take it the next day my legs feel worse...
That wait stinks, but have them put your name in for a cancellation appointment! I was lucky during my diagnosis stage, right after I was told the bad news by a local neuro, my next door neighbor got me into Beth Israel in 10 days. Good to have doctors living next door.
Hi Henny, that would be good to see Dr. Chad... and IF you need to start going to the clinic, he is at UMass Worcester, which I think is closer to you? I'm trying to remember where you live. I truly hope they find something else going on for you! How close do you live to me? I'm in Southborough. There's an MDA office in Westborough that has a meeting once a month, it's this Wed. Good luck honey.
Hmm... wish my hips got smaller instead of my legs! I used to have pretty nice legs...
The neuro that diagnosed me used to work in the ALS group at Lahey Clinic at one time... I still thought it was too fast a dx, especially since I didn't really have many UMN signs, except for quick reflexes.
Good luck, and keep me posted! Mass General is excellent... Since you're in Mass, we should try to get together sometime and compare our skinny wrists and legs, lol.
Oh, I know what else I wanted to say... Get a nikken seat cushion, it has magnets, and you can put a pillowcase on it and sleep with it under you. I say to try that as I believe it has helped prevent a lot of my pain. I had very bad sciatica, especially when prego, and that's the only thing that helped. Good luck, and sending you a hug.
Hi Henny Penny... just wanted to say good luck with your appt at Mass General... I know how frustrating it can be not to know, but actually I had the opposite problem. The first neuro I had diagnosed me, and I spent the next 6 months trying to get a different diagnosis. Turns out, she was right. Sucks either way, doesn't it.
A little story about Dr. Chad... he sent me for a followup EMG last fall, and I didn't hear from his office so I called after a couple of weeks. Seems he was away at an international ALS conference and wasn't able to get back to me, and didn't want to go over the results on the phone. He knew we lived in the same town, so after a day at the hospital, he came over to my house to talk to me about the EMG, and to give me an update about the conference. First house call I've had since I was a little kid! He didn't get here until about 8:30 pm, apologized for being so late and keeping me waiting for the results. He stayed for nearly an hour. Definitely try to get him if you can!
Hi HP, I'm so sorry I didn't get back to you sooner, I meant to look up the names of the docs to send you and then forgot. My doc at Mass General is Dr. David Chad, but I see him at the ALS Clinic at UMass Worcester. I also see a neuro there who is in charge of the Dex trial at Mass General, and I forgot how to spell his name, so I'll have to send that to you tomorrow.
I LOVED my neuro at Beth Israel, his name is Dr. Seward Rutcove, and I would highly recommend him... he's also listed in Boston Magazine as one of the winners of "whatever" the award they were giving for his invention of an EMG type machine that isn't invasive. He also won a $1 million award for that invention. It's to help diagnose in the office more quickly, rather than have to wait for an EMG... and no needles.
I hope you get some GOOD answers for yourself soon. I'll try to send you the other name tomorrow, if I forget, remind me.