PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

Kevin great to be able to celebrate a happy occasion.
I wanted to ask you how the MM is working for you? I started with the tincture oils about 2 weeks ago. I've been able to do away with the Ambien that I've been on for 12 years and fascilations have really decreased. Hoping it's doing good things for you. How are your symptoms so far? I've had no progression since being diagnosed. Neurologist wants another EMG done after the 1st of the year. Emg's suck!!!!

Going to spend the afternoon with our youngest grandchild. Just turning 18 months old and wears me out. It's been awhile since we've done the baby thing. Our other grandkids are 19, 16, and 2 14 year olds.
 
lisa g said:
Kevin great to be able to celebrate a happy occasion.
I wanted to ask you how the MM is working for you? I started with the tincture oils about 2 weeks ago. I've been able to do away with the Ambien that I've been on for 12 years and fascilations have really decreased. Hoping it's doing good things for you. How are your symptoms so far? I've had no progression since being diagnosed. Neurologist wants another EMG done after the 1st of the year. Emg's suck!!!!

Going to spend the afternoon with our youngest grandchild. Just turning 18 months old and wears me out. It's been awhile since we've done the baby thing. Our other grandkids are 19, 16, and 2 14 year olds.
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The CBD-THC Oil I got does seem to help me relax. Still taking an Ativan once a day, and the combo reduces my anxiety. I have to be careful not to overdo it, though, because I have a very low tolerance to THC. My fasciculations might be a little diminished, but they are still there all during the day. Luckily they die down at night and with the Trazadone I sleep great.

As far as progression, I still don’t have any functional failure and someone seeing me on the street would never know I have this disease. It seems to be slowly attacking my upper back and shoulders more than anything, though I’m still pretty strong in those areas. Still no UMN involvement as best I can tell.

Unfortunately I have pain like numerous others have also reported...deep muscle aches and joint pain in my case. This isn’t from a lack of range of motion or anything else. I think the muscles are weakening and the compensation creates the aches and tightness. But for now, I’m thankful I can still do most everything. Best, Kevin
 
lisa g said:
Kevin great to be able to celebrate a happy occasion.
I wanted to ask you how the MM is working for you? I started with the tincture oils about 2 weeks ago. I've been able to do away with the Ambien that I've been on for 12 years and fascilations have really decreased. Hoping it's doing good things for you. How are your symptoms so far? I've had no progression since being diagnosed. Neurologist wants another EMG done after the 1st of the year. Emg's suck!!!!

Going to spend the afternoon with our youngest grandchild. Just turning 18 months old and wears me out. It's been awhile since we've done the baby thing. Our other grandkids are 19, 16, and 2 14 year olds.
Click to expand...
Lisa, I’m curious. I recall that you were having another EMG done in August at the Cleveland clinic. Did you have that done, and if so, was it different than the first one that led to your diagnosis? Kevin
 
Kevin,
Yes I did have an EMG in August and the results were different. The results were better than the one in April. That's why they are repeating the EMG in January. My neurologist is also having me keep a journal of symptoms. While she said she's pretty certain that a mnd is present she's not going to put a label on it.
 
Kevin,
She also wants me to continue on the Riluzole
 
I'm not that optimistic. You know when something is not right with your body. I just think neuro is being cautious before calling it.
 
lisa g said:
I'm not that optimistic. You know when something is not right with your body. I just think neuro is being cautious before calling it.
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Hi Lisa. Several of us newly diagnosed are exchanging phone numbers and emails and are trying to arrange a conference call with a few of us next week. Nikki set up a “Contact Info” thread in the PMS link once available when you log in. If that’s something that interests you, we’d love to have you participate. I know you’re in the process of heading to Ohio, and we don’t have a time set up yet, but hope you would be interested in participating. If not, that’s perfectly fine too. Best, Kevin
 
Kevin,
I think I PM you not sure if I did it right. I'm in on the conversation just let me know when. I should arrive in Ohio tomorrow
 
lisa g said:
Kevin,
I think I PM you not sure if I did it right. I'm in on the conversation just let me know when. I should arrive in Ohio tomorrow
Click to expand...
Hi Lisa. Got the message to count you in but no phone number. There is a Contact Info thread Nikki started (the little envelope at the top) so you can put it there. That way all of us have it.
 
Hi All,

I just came back in for a swim. The pool temperature was 87 and, for a while, I forgot about my pain. I no longer use sunscreen so I'm getting a tan and the sun on my face feels good.

Kevin.....I feel your pain, literally. If not for the pain I would still be walking on the treadmill and probably taking trips. I know some PALS with no pain at all. I have all kinds of sensory symptoms but nothing shows up on the nerve conduction study. My legs feel like they have peripheral neuropathy (from everything I've read.) ALS doctors don't believe it's ALS causing the pain. I NEVER had any pain except in my neck from a car accident. I ran and walked miles every day. Never any pain. It's my pet peeve with these doctors. ALS doctor got on my butt yesterday because I told him I was taking 1/4 of an Oxy after breakfast so I could play cards and go in the pool. It's instant release and will be out of my system in 4-6 hours but even so I'd still take it.

Lisa, enjoy the colors. My cousin sent me a picture of my old stomping grounds in the Adirondacks and it was beautiful. Attached.
Fall.jpg
 
Kim those colors are beautiful, we saw some of the leaves starting to change on our way up can't wait until they all change I'll be sending pictures. We finally arrived in Ohio, the weather was very mild today so I took advantage of it and went for a 4 mile walk. Tomorrow we're supposed to have a cold front come in and the temperature in the afternoon is only supposed to be in the high 30's. Big difference from Florida weather.
 
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